BeCAUSE Breast Cancer Foundation and Coalition

Possible FREE mammograms in Seaside, CA

2008-03-28T18:47:00.000-07:00

Posted today; Friday March 28th in the The Californian.com

A free health fair is being held on March 30.

"The city of Seaside is sponsoring a Community Health Fair from 1 to 4 p.m. March 30 at Oldemeyer Center, 986 Hilby Ave., Seaside."

"The fair is free and includes vendor booths and free or low-cost testing on blood pressure, blood sugar, cholesterol, bone density, hearing, pneumonia shots, mammograms and more."

Information: 899-6819.

This is pretty all that I found on the matter. But there it is, a post speaking of free mammograms. I do not know if this means that a mobile mammography unit will be available, and that the tests will cost, or if there is still a minimum age requirement. But it does not hurt to check it out if you are from the area. (Mammograms tend to run about $150.00 if they are not being covered by insurance.)

There was no area code posted with the phone number. According to Google: The common Area Code for the Seaside, California area is 831.

Abviva and Mammastatin Serum Assay (MSA)

2008-03-26T08:33:00.000-07:00

Here is an article that speaks about Abviva. The original article I found was by Business Wire and posted on March 24, 2008.

Excerpted from that article:

"Abviva, Inc. (OTCBB: AVVA) today announced the Company launched its new website at www.abviva.com as part of the continued development of its breast cancer diagnostic business and the Mammastatin Serum Assay."

"Abviva’s website is intended to be an informational resource for women and physicians to increase awareness and understanding of the benefits of early breast cancer detection and of the Mammastatin Serum Assay (MSA). In clinical studies, 98% of women with no history of breast cancer had normal or high levels of mammastatin in their MSA blood test. More importantly, 74% of women with a history of breast cancer had no mammastatin present or very low levels. These findings highlight the early detection benefits of the MSA."

"The MSA test can be valuable for early detection of asymptomatic, undiagnosed women. Additionally, more women can have increased access to breast cancer screening with the MSA, especially in underserved areas and populations, because it is a simple blood test. The Company intends to offer the MSA test later this year."

There was a link for more information, so I clicked it. It took me to here. With a little more information than the first article, it also contained a form that I could fill out requesting even more information on the test/ Abviva.

I filled out the form (we'll see what information finds it's way into my in-box...) and when I hit the send button, I ended up at the Abviva website.

Here is the information and link to the second article and the form. An excerpt from that article is below.

"Abviva intends to offer early access to the Mammastatin Serum Assay to women and their physicians, clinics and hospitals later this year."

"The Mammastatin Serum Assay was developed from the Mammastatin technology discovered by scientists at the University of Michigan Cancer Center and originally published in the journal Science. "

For more information, go to the Abviva website.
http://www.abviva.com/BCT.html

Excerpted from the Abviva website:

"The Mammastatin Serum Assay (MSA) is a biological measure of breast cancer risk. It is a non-invasive method of detecting the level of the protein Mammastatin in blood serum. The MSA has been studied as a means to provide early detection of individuals with breast cancer who are undiagnosed and to identify individuals who are at increased risk of developing breast cancer, before cancer develops and can be diagnosed by conventional means."

"We will provide you with up-to-date information on Abviva, including our press releases, a press kit you can download, and a glossary of terms for your use."

For Additional Information Please Contact:
Ms. Adina Shaheri
Phone: 310-443-4102
Email: Adina@abviva.com

For moreinformation on the Mammastatin Serum Assay (MSA) please visit: www.breastcancerdiagnostic.com

(This is the same web address for the article and form I mentioned above.)

The Long Island Breast Cancer Action Coalition

2008-03-10T10:31:00.000-07:00

Here is a breast cancer coalition called The Long Island Breast Cancer Action Coalition . they are focused on providing educational classes and support groups for those with breast cancer.

From their website:

"1 in 9: The Long Island Breast Cancer Action Coalition is located at 86 East Rockaway Road in Hewlett. 1 in 9’s Hewlett House offers classes, support groups, and other programs. All services are free and confidential. Pre-registration is required. For more information, call 516-374-3190 or visit www.1in9.org."

To contact The Long Island Breast Cancer Action Coalition:

1 in 9: The Long Island Breast Cancer Action Coalition
P.O. Box 729
Baldwin, NY 11510

Phone: 516-374-3190
Fax: 516-569-1894
E-mail:info@1in9.org

Breast Cancer Services in Havasu, Arizona

2008-03-10T09:55:00.000-07:00

I came across an article about a health fair held in Havasu, Arizona. It mentioned the Havasu Community Health Foundation and the assistance they provided for those with breast cancer, as well as those in need of assistance with mammograms. So I did a little digging. This is what I found out:

The original article:

First health fair deemed a success
By John Rudolf
Saturday, March 8, 2008 7:58 PM MST

Excerpt from the original article:

"Jeanie Morgan, executive director of the Havasu Community Health Foundation, said the fair had been effective in getting out information about the organization’s programs."

“There’s a lot of people that don’t know we exist at all,” Morgan said. “When we come to events like this, it’s a chance for us to reach out.”

"The foundation provides low-cost lab work, mammograms, and other health tests. It organizes support groups for the ill, and provides education and information to the public on numerous health topics."

Here is the link for the Havasu Community Health Foundation .

Information from their website:

They are located:

(in The Shambles)
2126 McCulloch Blvd.
Suite 7
Lake Havasu City, AZ
86403

They provide:

The Cancer Association of Havasu is proud to provide the following cancer-related services in the Lake Havasu Community under the umbrella of the Havasu Community Health Foundation:

* Free PSA blood tests for early detection of prostate cancer in men through Lake Havasu Medical Lab
* Free CA 125 blood tests for early detection of ovarian cancer through Lake Havasu Medical Lab
* Mammography Procedures with $10.00 co-pay - screening, diagnostic, or ultra-sound procedures available through Havasu Regional Medical Center (includes Radiologist's reading)
* Wigs, hats and scarves loaned to cancer patients
* Prosthetics for uninsured mastectomy patients
* Information on most types of cancer, treatments, and often-asked questions
* Free Wheat Grass Nutritional Supplements available to all patients undergoing treatment
* Support Group meets 3rd Tuesday of each month 4:00 PM 2126 McCulloch Blvd, Suite 5 (in The Shambles)
* Bosom Buddies support group for breast cancer patients and survivors meets the 1st Wednesday of each month, 4:00 PM, 2126 McCulloch Blvd, Suite 5 (in The Shambles)

For details or to take advantage of these services, contact the Havasu Community Health Foundation office in The Shambles 2126 McCulloch Blvd, Unit 7, Lake Havasu City, AZ 86403 - Phone: 928 453 8190.

While there was no mention of age or financial restrictions, this is one more place that you might want to try for assistance.

Mammograms for Women Without Insurance

2008-03-10T09:45:00.000-07:00

Here is a place to go to for free mammograms if you are in the Erie area of Pennsylvania. There is no mention of age restrictions. However, you need to be a woman without insurance.

Mammograms for Women Without Insurance

Monday, Greene Township Municipal Building, 9333 Tate Road
Wednesday, SafeNet, 1702 French St.
Thursday, Greater Calvary Full Baptist Church, 2624 German St.

March 19, Goodwill Industries of Erie, 2526 East Ave.
March 27, Mercy Center on Health and Aging, 444 E. Grandview Blvd.

Call 838-9000 to make an appointment.

Here is the link for the Erie News that posted the announcement this morning.

Chemo Chicks

2008-02-20T13:58:00.001-08:00

Here is a website focusing on women's cancer concerns such as head coverings, hair loss, shaving parties and more. Not just for breast cancer, and not just for young women, Chemo Chicks helps to address concerns of all women facing chemotherapy.

You can contact Chemo Chicks at:

E-mail: info@chemochicks.com
Phone: 310.439.1490
Mail: Chemo Chicks™, 4320 Kenyon Avenue, Los Angeles, CA 90066

Breast cancer awareness aims younger

2008-02-08T15:07:00.000-08:00

This is a very well written article about the shift in awareness and acknowledgment of young women and breast cancer. From the Tuscaloosa News in Alabama, Anna Maria Della Costa sheds some long-awaited light on young women facing breast cancer.

Here is the link to the article: It's far too good to include only an excerpt here. Please read it and pass it along to everyone that you know.

TUSCALOOSANEWS.COM
Published Friday, February 8, 2008
Breast cancer awareness aims younger
By Anna Maria Della Costa, Assistant Managing Editor

Reach Anna Maria Della Costa at 205-722-0191 or annamaria.dellacosta@tuscaloosa.news.com.

Guess where I'll be tomorrow?

2008-02-08T12:05:00.000-08:00

I'm going on a visit. To speak to a Senator, if possible.

In an article written by Alicia Lanier, "Free Health Screenings at Feb. 9 for Women's Health Forum in Santa Clara Sponsored by Senator Alquist" it states that: "Senator Elaine Alquist, California Senate District 13, is holding a free Women’s Health Forum, Thriving with Change, in Santa Clara from 9 a.m. to 1:30 on Saturday, February 9, 2008. This is a great opportunity for women to obtain several free health screenings, including bone density, blood pressure, cholesterol, glucose, body mass index (BMI), and breast cancer prevention screening."

"You’ll also learn about health care programs and services provided by the state as well as health care issues being considered by the California Legislature. Keynote speaker will be former State Senator Jackie Speier. The event will be at the Santa Clara Senior Center, 1303 Fremont Street, in Santa Clara. For more information and to sign up (space is limited), call Senator Alquist’s office at 408-286-8318."

And yours truly just called the number above. I was told to "just walk on in". So please, come join me! I was also told that they will be taking down contact information for future events. (I love mailing lists! It takes so much digging out of trying to find out what is going on and making changes...)

Here is the link to the original post: Free Health Screenings at Feb. 9 for Women's Health Forum in Santa Clara Sponsored by Senator Alquist

And the link to Senator Alquist's site: Senator Elaine Alquist . She is the the State Senator representing the Heart of Silicon Valley. The 13th senate district covers much of Santa Clara County including the cities of San Jose, Sunnyvale, Santa Clara, Mountain View, and Gilroy.

The Pennsylvania Breast Cancer Coalition

2008-02-08T11:51:00.000-08:00

Here is a Breast Cancer Coalition in Pennsylvania that I came found: The Pennsylvania Breast Cancer Coalition .

They are a grassroots organization advocating in (of course) Pennsylvania. They have a great website, as well as an annual conference. The 2008 conference will be held in October.

What caught my attention most?

One of the topics/workshops at the conference is "Breast Cancer in Young Women". Below is from their site about that particular workshop.

Breast Cancer in Young Women
Session AM 1
Session AM 2

Deena Damsky Dell, RN, MSN, AOCN, BC
Clinical Nurse Specialist/Clinical Educator
Fox Chase Cancer Center

Billie Hammond
Breast Cancer Survivor

Ruben Perez, MD
Good Samaritan Hospital

"Explore the specific issues young women face when diagnosed with breast cancer including fertility, psychological and sexual issues. Learn how treatment options might be different for a young woman and hear a young survivor's personal story."

Worth checking out. And really good to see that young women and breast cancer are being addressed. (Finally.)

Here is the link to the page on their Annual Breast Cancer Conference

Free Mammograms in 2008: Colorado

2008-02-08T11:03:00.001-08:00

More free breast screenings for women over the age of 40.

I came across this article on free breast screenings. Posted in YourHub.com and written by Gary Sky on 1/25/2008 Tri-County offers free health screenings

From the article:

"Tri-County Health Department's new Peak Wellness program offers free cancer and heart disease screenings for qualifying 40- to 64-year-old men and women in Colorado."

"The free visit to a Peak Wellness clinic includes blood pressure, cholesterol, blood sugar and body mass index tests to screen for heart disease risk factors. Female clients will also receive a Pap test to screen for cervical cancer, a clinical breast exam, and will schedule a free mammogram to screen for breast cancer. In addition, clients also have the opportunity to speak one-on-one with a Registered Nurse, a Registered Dietitian, health educator and/or a smoking cessation specialist for free. The average clinic visit is 90 minutes."

"The Peak Wellness program is open to men and women who are 40- to 64-years old; meet income guidelines; are legal U.S. residents; do not have insurance; and/or for women, do not have insurance that covers a Pap test or mammogram and have not had a Pap test or mammogram in the past 12 months. Potential clients can live anywhere in Colorado."

"Appointments are held at multiple locations throughout the metro area including Aurora, Castle Rock, Commerce City, Englewood and Northglenn. For more information or to make an appointment, call 303-363-3018 or visit their Web site at www.tchd.org/peakwellness.htm."

And the waiting continues...

2008-02-04T16:18:00.000-08:00

I spoke with the case manager at the Patsur Program... And the news is to the tune of $6,000.00... And they have never had a surgeon request a breast MRI before. So they don't think that they can cover it. But she is reassuring me that she is working on that... (And has been in the two weeks since I saw the surgeon... Without letting me know, of course...) So I am crossing my fingers that something will happen that is positive... (Like she really is working on this... But after the last handful of dealings...)

The surgeon warned me that the test was expensive... He had said about 3 grand... Plus FNA/LNA for the biopsy... (And while it has been almost a year since all of this has started, he discovered another location for concern... Time is not a friend in this sort of thing...) He said that the alternative would be more expensive, more invasive and more scarring... Not to mention, less effective... (That would be to open the breast up and do an old fashioned biopsy, and hope that he got the right location in the mass... Which would be fine if he were just going to remove the whole area, and then let me know if it was necessary for radiation afterward or not... But this whole wanting to have children thing is putting a damper on that... Not to mention that is just not how these things work... Though WHY that is, I just don't know, and no one else seems to either...)

So I am waiting... Again... Still...

And I think it may be time to get a credit card. The one with the highest limit I can get... I don't think they'll take my left arm as payment... They certainly aren't taking my breasts no matter how much I push for that... (A sick joke... I know... Sorry... Just frustrated...)

What I have left to say is this: When you are voting tomorrow... Ask yourself how important health care is to you... And how important it will be to you when you retire. Because I have Medicare. And they do not cover so many things. (Things like this...) Ask yourself if in a handful of years you want to be struggling to find a doctor who will even see you, let alone a hospital that will do the tests that you need to (save your life) lead a healthy life... And then vote for those that will support moving in a direction that will make sure American's do not have to continue facing such a grim future. So that one day, YOU do not have to face a grim future. (This is not something that I would wish on anyone...)

More waiting...

2008-01-23T11:14:00.000-08:00

Getting out of bed was difficult today... I just don't want to face what lies before me...

It is the week for appointments... Being a female of a certain age, it seems that I am in and out of the Doctors for one reason or another... A lot... Earlier this week, it was to see the breast surgeon, who is asking for an MRI before he goes in for a biopsy.

(He says that he does not want to drive blind and would rather have a map as to where he should biopsy, rather than run the high risk of getting a false negative.)

And since he found a secondary area that concerns him... Well... Let's just say that I really like this Doctor and appreciate that he does not prefer the quick cut and see method... I'd rather really know what we are facing...

We are now waiting, again, to see if I am going to get the tests approved through the program that I am on... Otherwise, it is about $3,000 out of my pocket for the test and biopsies...

(What was that saying about getting water from a stone? Yup, if I have to, I will make that saying untrue... Somehow...)

Day Two of Elbow Rubbing...

2008-01-20T18:38:00.000-08:00

It has been a long time coming... What I have been up to... But there is just no spare time when one is trying to save the world... Or at least young women with breast cancer... Or at least myself...

But at least I am going places... And fast... With possible funding for my Foundation through grants... (Who knew that was possible... Okay it makes sense, but there has not been enough time to really just sit down and THINK here. It has all been about getting information and taking action...) And the offer of being recommended for intensive training for lobbying and pushing for legislative changes... (And that is some thing that I want to do so badly. To have the chance to do positive and proactive things on a larger scale and to make waves, not just ripples... Now THAT is exciting... But let's not get me all fired up about that... I could just go on and on... But I think that is what "they" refer to as PASSION...) Things are moving forward. (And I am very excited about all of the things that are going on... All of the incredible people that I have been meeting...)

Day two of the trip to the State Capitol went even better than Day one... (How IS that possible?) I took so many notes... (And with the help of the best interpreter I have ever seen, a little go-juice- okay... so it was THREE cups of coffee, and a great table-mate also taking copious notes, I think I actually got every word. Did I mention that there were handouts and power point presentations? Information rules!)

We participated in a Discussion Board that was filmed... As well as many of the top specialists in the breast cancer areas speaking, answering questions, and passing along the latest information.

The key note speaker brought tears to my eyes more than once. What an inspiring woman!

And just like that, it was over as quickly as it had started...

But I go back soon to continue to make waves... Make changes... Make awareness... Make a difference... Make something... (Perhaps the something is more than a few Senators and Assemblymen go off running in the other direction because they are tired of my petitioning face...)

So there you have it... So much more to get done before I get to bask in the sun on the black sand beaches watching the lava flow in the near distance while I sip on a mai tai...

Ohhh yeah... Don't forget the umbrella baby...

Rubbing Elbows...

2008-01-18T08:36:00.000-08:00

Day one of rubbing elbows with officials, aides, and other activists went wonderfully!

I met some really incredible people... An inspirational pair of young women from the Young Survivors Coalition, courageous leaders willing to share their wisdom, officials that really WANT to make a difference, officials that don't and a 13 year old girl from San Diego who, along with her young sisters started a foundation called "You Go Girl". (You should check it out... She is going to be among tomorrows leaders...)

I am heading back for a one on one with an Assemblyman to follow up on the legislature that we are trying to get passed. (And I cannot even BEGIN to tell you how very, very excited I am over that prospect...)

So... All in all, Day One went so much better than I had hoped... And to think that I was having Eleventh Hour Reservations... I am so glad that I came.

I have a day of training and symposium ahead of me... (I love learning, s this is actually going to be FUN! Just watch out... I ask LOTS of questions...)

So much to share with everyone about the great things I have learned, the information that I have been given, the discoveries that I have made... But later... Promise!

Well... I am off to be the poster child (eh... young woman... um... un-insured/ under-insured woman) that we are actually representing... (I have told my story so many times that I am beyond tired of telling it. But, I am not alone in this, and changes MUST be made... So tell and re-tell I do... (Thank goodness that I don't embarrass easily...)

Wish me luck! (I did kick butt... I did take names... Actually, I really did...)

Turning the Capitol PINK...

2008-01-16T16:17:00.000-08:00

Tomorrow is going to come very early for me. I leave in the dark to head up to the State Capitol. I am joining forces with Susan G. Komen for the Cure and their Community Challenge. We are spending two days lobbying and in lectures, training seminars, and press conferences.

I am very excited! I am on my way to making changes in yet another forum. (And it is my hope that I will be able to take what I learn, and the contacts that I make and be able to forward awareness for younger women affected by Breast Cancer...)

If you have the next two days off, and want to join us, it would be great to see you there!

I am including some of the information below.

Wish me luck! I am off!!!!!!! (Yea!!!!!!)

Komen Community Challenge:

"This is the war on breast cancer. We’re bringing it to Capitol Hill, and then we’re heading clear across the country. Susan G. Komen for the Cure is taking its special brand of pink ribbon activism on the road in a powerful grassroots effort to “Close the Gap” in access to quality health care, research and information. Over the next 25 years, five million Americans could be diagnosed with breast cancer – and because there are gaps in our system, this diagnosis will be deadlier for some than for others. That's wrong."

"So as we mark our 25th year, the Komen Community Challenge is hitting 25 cities, reaching tens of thousands of people at town hall meetings, roundtables, lobby days, and summits. We’re rallying to make breast cancer a national priority, to help “Close the Gap” in funding that keeps thousands of women from receiving life-saving breast cancer care. In order to do this, we extend the Challenge to draw 25 million new people into the fold. We must - because in the next 25 years, 25 million people worldwide could be diagnosed with breast cancer."

"Come One. Come All. We are the face and voice of the global movement. As local activists and global citizens we will mobilize millions to put an end to this dreaded disease – forever."

Sacramento, California

"The California Komen Community Challenge is coming to Sacramento, California on Thursday, January 17, 2008 – Help us turn the State Capitol PINK!"

"This January 17 and 18 is the first Statewide California Komen Community Challenge. We hope that you will join us and Californians from every corner of the Golden State at the exciting events we are planning!"

"In the lead-up to the February 5, 2008 presidential primary election, the whole country will be paying close attention to what California has to say. Join us as we restore the sense of urgency to the breast cancer movement on January 17 and 18 and help put breast cancer in the national spotlight so that we can end breast cancer forever!" Here are the details:

"Close the Gap!" Rally and Lobby Day

What: The California Komen Community Challenge - "Close the Gap!" Rally and Lobby Day

When: Thursday, January 17

* 10:30 a.m. - Press Conference at the State Capitol
* Noon - 1:00pm - Legislative Training Lunch at Sheraton Hotel
* 1:30pm - 4:00pm—Legislative Office calls
* 5:30pm - Rally & Lighting the Capitol Pink / West Steps of State Capitol (join us and get a free Komen T-shirt!)
* 6:00pm - Concert at Crest Theater in Downtown Sacramento

Where: Sacramento, California

California State Capitol ~ 1303 10th St, Sacramento, CA 95814
Sheraton Hotel ~ 1230 J Street, Sacramento, CA 95814
Crest Theater ~ 1013 K Street, Sacramento, CA 95814

Who: You and all your colleagues, friends, family along with breast cancer survivors, co-survivors and advocates!

How: It’s easy! RSVP today!

Community Educational Symposium

What: The California Komen Community Challenge - Community Educational Symposium

When: Friday, January 18

* 8:00am - Breakfast
* 9:00am - Symposium

Where: Sacramento, California / Sheraton Hotel ~ 1230 J Street, Sacramento, CA 95814

Who: Breast cancer survivors, co-survivors, advocates, stakeholders and community leaders.

How: It’s easy! Email info@komenchallengeCA.com to RSVP today!

"Susan G. Komen for the Cure is re-energizing and amplifying a call to action for the breast cancer movement. Pink ribbon activism will take hold of California’s State Capitol in January 2008. We need ALL breast cancer advocates to help us make lots of noise in Sacramento as we challenge decision makers to "close the gap" in policy and funding that keeps too many women from receiving lifesaving breast cancer care.Help us turn the State Capitol PINK!"

"For more information about the California Komen Community Challenge, email info@komenchallengeCA.com or call 888-247-5319."

Okay... Here we go again...

2008-01-09T08:18:00.001-08:00

Here we go again with the run around. It's not as if this is not serious or anything... I mean, breast cancer doesn't kill or anything, right?

Yeah...

Notice the dripping sarcasm... Feel the hostility and anger and frustration pouring out of me at this very moment... Makes you want to scream too doesn't it? Want to do something about it? Me too.

After having to go to another state to get a Mammogram and Ultrasound for the lump in my right breast, I am still getting the California run around. And it has been five weeks of waiting. If I had not called and insisted on speaking to someone, let alone the person who was supposed to be calling me back (Annie Fischer, who still has not returned my call or sent out the information that she promised me five weeks ago.) who knows how much longer I would have been waiting.

Let me back up here a little for you. (If you are new to what is going on, you might be experiencing a case of hovering question marks above your head right now...)

Last March (as in March of 2007) I went in and had a had dozen lumps in both breasts discovered in a breast exam. There was one (really large) lump in my right breast that concerned the Doctor greatly. I was placed on a high vitamin E, B and iron therapy and was told to sit tight and see if there were any changes for six months. So I did. I went back and the Doctor did not like what she found. She ordered a Mammogram and and Ultrasound to make sure that this lump was not cancer. (I have a huge family history of breast cancer and have been monitored since I was 17 when the first fibrous lump was found near my lymph nodes.)

I made calls. Many, many calls. And no one would see me. I was told I was too young. I was told that I was not eligible for any program that I contacted. I was sitting there with a lump that was 2.5cm x 5cm and there was no one that would do a Mammogram or an Ultrasound, no matter if I had financial assistance or not.

Fast forward to November of last year (November 2007). I was now in Northern California starting the whole process all over again. (Having exhausted Southern California options what else could I do?) I was lucky for a supportive significant other that I was staying with. (You have no idea how many nights I vented to my poor sweetheart over another waisted day of dead ends...) I was also lucky that my sweetheart's Mother worked in a hospital in Oregon. I got a call from her letting me know that there was a cancellation in two days time, and could I manage to fly out to Portland to get the tests run?

What do you think?

I begged family for funds, booked a flight, reserved a car and called the California doctors. And that was when I hit another road block. I was calling the Doctors to get my referrals transfered (as in faxed, e-mailed, or mailed) up to the hospital in Oregon. And they would not. I went down to the office in person and requested copies for myself, in writing, and lucked out. Lucked out that is until I read what the paperwork said. Mammogram only. (At this moment, let me point out that I am only 34. I turned 34 in November of 2007. This made me too young for any of the existing programs, Medicare, as well as too young for sagging breasts with little density. What blesses me with large, perky breasts also curses me when it comes to tests like Mammograms... The test is all but useless. What I really needed was the Ultrasound.) While being seen by the referring doctor I was assured that I would be getting BOTH tests. But the paperwork said otherwise.

I contacted the Doctor in Southern California again and asked that the pertaining medical records be sent to the hospital in Oregon, again. I had requested copies in person when I was there at the end of the summer, but after waiting half a day (no exaggeration) I had to leave without getting any closer to being allowed to look at my chart, let alone receive copies of what I needed. This time, I was assured that the request for Mammogram and Ultrasound would be re-issued (Since they said that they did not have a copy of the first request kept in my file...) and sent to the hospital in Oregon.

I hopped on the plane and made it to the hospital. I checked in, wore my identification bracelet with nervous relief that this would soon be over, one way or another, and waited.

I waited because the Southern California doctor had not sent up the referral as promised. I called and was told that they would. The hospital called. In fact, FOUR different people from the hospital called. We were told that the fax had been sent. Then we were told that there were problems with the fax machine, and that we would get the fax as soon as possible. Then after several hours of constant calling, I was told that they had finally located my file. (Makes me wonder how they could have sent the information as they had said if they could not locate my file...) But in the end, the hospital received a copy of the first referral. (The one that I was told I could not have a copy of originally.)

I had the tests performed and the results right away. The Mammogram showed nothing, which was expected. Even with the new digital technology, my breasts are too young and dense. The Ultrasound showed the lump plain as day. (Which we knew that it would since anyone could feel it due it's large size.) What the Ultrasound showed was that the lump was NOT a cyst. It was indeed fibrous. The Radiologist thought that the likelihood of cancer was slim, but only a biopsy can confirm cancer.

On the drive to the airport I received a call from Annie Fisher, the case mamnger for the program I was (supposed to be) in. She assured me that I had had an appointment to have the tests performed the following Friday, (though I had not been contacted to be aware of this information, the last I had heard was that it could be months...) and that she would forward the test results to the breast surgeon in Northern California. (She had already received the results from the Oregon hospital.) She assured me that I would be placed on a list for a biopsy so that they could rule out cancer and close my file. That I would be getting a letter in the mail that would have the breast surgeon's number on it for me to call and schedule an appointment for the biopsy to be performed in January of 2008. Sounded good enough for me, the holidays were upon us and who does a biopsy over Chrismas?

I returned to California.

I waited.
And waited.
And waited.
And five weeks went by.

Still nothing. No letter. No call. No information. So I called Annie Fisher back. She was not available. I left a detailed message and my number with the receptionist.

Around 11:30 yesterday I got a call from Susie. She said that I had in-eligible all over my file because I had Medicare. (They do not cover any of this until I am over 40, I am 34. That makes me eligible.) Then she said that I had access to the "Every Woman Counts" program. (I an too young for their program being under the age of 35.) She said that the hold up was that I had self pay on my records. (I'll pay, or have the program cover it, either way, I need a biopsy.) She said that they would not see a self-pay, that they had to be assured of receiving payment. (Of course, this is about money... I said I'll pay...) No good.

We went round and around. I stood my ground. She wanted to know why I went to Oregon to have the tests done. I explained that after dealing with this since March, I really did not want to die from breast cancer. You can see how it went from there. (Perhaps she does not think that breast cancer is deadly? Or that a lump the size of an apricot pit is nothing to worry about? Perhaps she should stick to one story, rather than telling me one thing and then changing it to another. I mean, if I was marked as ineligible, then how was it that I was supposedly scheduled for a Mammogram?)

Anyway...

I am still waiting for something. Like a place that will perform the biopsy. And I will tackle that. If for no other reason than I am tired of my Mother being unable to sleep at night, forget that I want a clean bill of health so that I can start a family...

So here is what I have to say for today:

--Make sure you are your own health care advocate. Keep records of everything. Who you spoke to, when and what was said. Keep all numbers, addresses, and e-mails. Do not throw away letters or the envelopes. (You may need the postmark on the front of the envelope.) Keep confirmation of e-mails and faxes sent and received.

--Do not let anyone tell you that you are too young or too old or the wrong sex for something. It happens. 250,000 women UNDER the age of 40 have breast cancer right now. Really it happens. 11,000 women are expected to be diagnosed with breast cancer this year. It happens.

--The longer you wait, the worse it gets. The worse for the cancer, (If that is what it is, but you won't know until you get screened, tested and biopsied.) the worse for your mental health, (Stress is a bad thing and it builds up quickly. Trust me.) the worse for your loved ones. (If you think that this effects only you, think again. They will worry. They will fret. They will feel angry and helpless.)

--Do something positive when you can. (I don't mean give a million dollars to charities. That is, unless you happen to have a spare million dollars laying around somewhere, then by all means donate it...) But you can write a congressman, senator, assemblyman, city council member, presidential candidate, or even "the GOVENATOR". You can vote. You can march, (Sacramento on January 17 and 18) walk, or rally. You can post a link in your blogs to this site, you can blog about it yourself. But no matter what you choose to do, know that it will make a difference in the end.

--Never give in. Never give up. Never stop believing in yourself. Never give up hope.

Okay, Enough for now. Thanks for the venting. I'll keep you posted. And I'll post up the facts (as in "Just the facts Mamm, just the facts") later.

Dreaming of the cure

2007-12-16T09:41:00.000-08:00

Dreaming of the cure

A blog devoted to Breast Cancer information and news. Has a very small amount of content at this point, but is focused on helping to spread the awareness of Breast Cancer Causes.

Started in June 2007 and based in San Diego this 50 year old woman is motivated to help make a difference by quilting and raising funds for the Susan G. Komen Foundation.

Support Our Boobs

2007-12-11T12:02:00.001-08:00

Here is a great site that has eye catching products. The traditional Pink Ribbon gets a silly makeover that may just be the thing to stand out in a sea of ribbons.

In their own words:
"10% Of All Sales Donated to Breast Cancer Awareness, Prevention, and Research.
Welcome to Support Our BoobsTM dot com. We have dedicated our time to producing clever and controversial products to help spread the word about a very serious disease that affects one out of eight women worldwide. Cancer is the number two killer of all women but we think it doesn't have to be that way. We know if we can raise breast cancer awareness across the globe then we can save lives."

And with products like these, they just may do it...

If you would like to check them out, and perhaps do a little supportive shopping, go to: Support Our Boobs

Connecting with others

2007-12-11T11:41:00.001-08:00

One of the worst things about wondering if I had breast cancer or not, was feeling separated from the life that I had before the lump. The life went on as usual, laundry piled up in the hamper, dishes stacked up in the sink, the tub still got dirty, and my friends still wanted to party like rockstars. But I did not. I was stuck inside my head, and it was filled with what ifs and worry.

For me, reading the words of those that had gone where I was going was a way to calm my fears. This could be overcome. I could take on this mountain of a challenge. And I could do it with grace and dignity. (Or at least have the appearance of dignity to those whose lives were still filed with thoughts of the next pair of shoes they wanted to buy.)

I stumbled across a few Blogs. And it was just what I needed. Daily perspective without someone telling me it was all going to be fine. (It is like a doctor saying that it is not going to hurt, or that the medicine goes down better with a spoonful of sugar, we know that already so we don't want to hear about it from those that don't have to take the spoonful of sugar in the first place.)

Here is a Blog about a 33 year old woman who is a breast cancer survivor. It is a regular Blog, written by a regular woman who has been there. She is like a friend that you already know, but don't. I came across it after my ordeal, but thought that I would pass it along anyway. You might just like it, and it just may help keep a little of the perspective that gets lost in the waiting game.

HOPE, STRENGTH, & COURAGE: My Story of Survival through Breast Cancer

As she says, she is reconstructing life after breast cancer.

The Pink Ribbon Program

2007-12-11T10:20:00.000-08:00

Information on the Pink Ribbon Program :

Excerpted from the website:

"Since 1991, the pink ribbon has symbolized breast cancer. Evelyn H. Lauder, founder and president of the Breast Cancer research Foundation says, "The pink ribbon stands for awareness. And it stands for the sisterhood that will help women survive – and conquer – this disease."

For more information on the Pink Ribbon Program:
(713) 792-JOIN
Located in Texas.

The Pink Ribbon Program is part of the Anderson Network. Also part of the Anderson Network is the Nellie B. Connally Breast Center.

"The Nellie B. Connally Breast Center is tickled pink thanks to the Pink Ribbon Volunteer Program established by the Department of Volunteer Services in the fall of 2001."

The Anderson Network ; a support group for cancer patients in Texas:
Patient & Caregiver Support Line:
800-345-6324
713-792-2553

Excerpted from the site:

"The Anderson Network is a unique cancer support group of more than 1,300 current and former patients who know just what you're going through, and can offer the right patient-to-patient advice and encouragement when you need it most. Our members are living proof that no matter what your diagnosis and treatment, there is always hope and the chance to live each day fully. "

Illinois Breast and Cervical Cancer Program

2007-12-10T13:29:00.000-08:00

Here is an article that talks about a program in Chicago called “Women Take Charge Night”. Posted on August 12, 2007, the website: Polish News discusses the success of the new program and of the newly expanded Illinois Breast and Cervical Cancer Program to get free breast and cervical cancer screening and treatment, where more than 3,500 women have enrolled for participation in.

Please note that the program for free breast cancer screening is for women OVER 40 and for young women who are at "high risk" with the BRCA1 and BRCA2 genes, as well as some young women with existing breast cancer symptoms.

Excerpted from the article:

"Beginning October 1st, 2007, Governor Blagojevich expanded the Illinois Breast and Cervical Cancer Program, making Illinois the first state in the nation to provide access to all uninsured women who need screening and treatment and making over 260,000 more women eligible for the program. All uninsured women between the ages of 40 and 64 now qualify for mammograms and breast exams, and uninsured women between 35 and 64 now qualify for pelvic exams and Pap tests. On a case-by-case basis, younger, symptomatic women who meet the guidelines are considered for the program. The screening program is free."

"Since the expansion was announced on October 1st, more than 3,500 women have signed up for services through the program. This represents an increase of 121% compared to the same time period last year. Since Governor Blagojevich took office in 2003, more than 109,000 breast and cervical cancer screenings have been performed through the Illinois Breast and Cervical Cancer Program for over 53,000 women. Since the program’s inception in 1995, more than 183,000 screenings have been performed."

To obtaion information on how to get free breast and cervical cancer screening and treatment go to:

Illinois Cancer Screening

Or call:

The Women’s Health-Line
888-522-1282
800-547-0466- for TTY (hearing impaired use only)

Information on IBCCP and other women’s health and programs can also be found on the IDPH website.

Anderson Network

2007-12-10T12:24:00.000-08:00

The Pink Ribbon Program is part of the Anderson Network. Also part of the Anderson Network is the Nellie B. Connally Breast Center.

"The Nellie B. Connally Breast Center is tickled pink thanks to the Pink Ribbon Volunteer Program established by the Department of Volunteer Services in the fall of 2001."

The Anderson Network ; a support group for cancer patients in Texas:
Patient & Caregiver Support Line:
800-345-6324
713-792-2553

Excerpted from the site:

"The Anderson Network is a unique cancer support group of more than 1,300 current and former patients who know just what you're going through, and can offer the right patient-to-patient advice and encouragement when you need it most. Our members are living proof that no matter what your diagnosis and treatment, there is always hope and the chance to live each day fully. "

RAI: Rise Above It

2007-12-10T11:12:00.000-08:00

While not specifically an organization for breast cancer, REI (Rise Above It) is a non-profit organization that focuses on helping young adults battling cancer.

Their Mission Statement:
"RAI creates an immediate positive impact on individuals and families who face the financial, emotional and spiritual challenges resulting from cancer."

"RAI provides financial assistance to young adult patients battling cancer; specifically those undergoing or pursuing clinical trial treatment options."

Upcoming events scheduled for 2008:

Sunday, February 3, 2008
5th Annual Super Bowl Benefit
The Blind Pig, Cleveland

Friday, June 13, 2008
Inaugural Black Tie - Black Dress, Yellow Tie
See Event Flyer
Marriott-Downtown Key Center, Cleveland

To contact RAI:

Rise Above It
P.O. Box 40054
Bay Village, OH 44140

General Email
Ryan O'Donoghue
ryan.odonoghue@raibenefit.org

Event Inquiries
Alexis Vinick
alexis.vinick@raibenefit.org

Thoughts on the FDA approved HALO Breast Pap Test

2007-12-10T10:54:00.000-08:00

Here is yet another mention of the Breast Pap Test. This one written by Kristina Collins for the Cancer Blog was posted on May 12th 2007.

The post, titled; Breast Pap Test to detect abnormal cells, talks about an FDA approved test called the Halo Breast Pap Test System.

Bringing up a very good speculation, the Blog asks you to think about this:

" The introduction of the HALO Breast Pap Test has been compared to the introduction of the Cervical Pap Test in the 1950s, which is widely credited with reducing cervical cancer death rates by more than 70 percent through the identification of abnormal cells in the cervix. Whether the same can be said for the breast pap test remains to be seen, but it is likely that the screen will be adopted by more OB-GYNs as oncologists push for ever earlier identification of cancer."

I am adding to that request for thought with this:

Why is it that an FDA approved test that could have such a huge life-saving impact on young women still under such wraps? Why is it that the test is not spoken of, or offered to patients? What is it going to take to bring the test into the medical offices and into the public eye? And how many women are going to have to suffer through breast cancer because they were denied the availability of early stage screening and diagnosing tests such as the HALO Breast Pap Test?

New blood test for diagnosing breast cancer to be out early next year

2007-12-09T23:42:00.000-08:00

In a Blog called scienceworld , an article titled Diagnosis 2.0 brought an incredible new test to my attention.

Posted on December 08, 2007 the Blog shared information about a company called "Power3 Medical Products, a biotech firm in Houston, Texas, has developed simple, low-cost blood tests for breast cancer, Alzheimer's and Parkinson's that will allow physicians to spot disease the moment it shows up in a patient's body—years earlier than today's most advanced technologies can catch it."

The article is exceptionally well written and I urge you to go and check out the site for yourself.

Excerpted from the post:

"Power3's breast-cancer test, to be released early next year, is the first diagnostic to emerge from a fast-growing field known as proteomics that looks for telltale proteins in a person's blood, just as genetic tests screen for disease-causing genes."

"The new breast-cancer test is much less invasive than a mammogram or biopsy. A doctor samples a patient's blood and sends it to Power3's lab, where scientists search for 22 irregular proteins that Power3 has identified as early signs of breast cancer. Initially the test will debut in 40 clinics that treat women at high risk for breast cancer, Rash says. Women under 40 years of age with high-risk genetic or family factors should benefit the most, he adds, because their denser breast tissue makes mammography significantly less effective."

NeoMatrix Breast Health Solutions

2007-12-09T23:22:00.000-08:00

NeoMatrix Breast Health Solutions

Excerpted from the site:
"Based in Irvine, Calif., NeoMatrix develops innovative devices that allow women and their doctors to promote optimal breast health. The company's premier product, the HALO™ Breast Pap Test, is the only fully automated, noninvasive breast disease screening device designed for use in the Primary Care setting as part of an annual well-woman visit."

"The HALO™ Breast Pap Test gives doctors and patients a new method to monitor breast cancer risk, quickly and easily. The fact is, all women are at risk for developing breast cancer. In the US we spend $3 billion annually on breast cancer screening, yet more than 70% of lumps are discovered during self-exams. Unfortunately, by the time a woman can actually feel the lump, the disease is no longer in its earliest, most treatable stage."

About NeoMatrix, LLC:

In their own words; NeoMatrix "Based in Irvine, Calif., NeoMatrix© develops innovative devices that allow women and their Ob-Gyns to promote optimal breast health. The company's premier product, the HALO Breast Pap Test System, is the first fully automated, noninvasive breast disease screening device designed for use in the primary care office setting. The System has been FDA cleared for the collection of nipple aspirate fluid for cytological evaluation for the determination and/or differentiation of normal versus pre-malignant versus malignant cells. For further information, visit www.neomatrix.com."

In a press release on September 05, 2007, NeoMatrix announced "additional funding for breakthrough breast cancer screening test".

"IRVINE, Calif. – Sept. 5, 2007 – NeoMatrix, developer of the HALO™ Breast Pap Test, the first automatic, noninvasive test designed to identify breast cancer risk, announced today that the company has closed a Series C round of equity financing. The financing will enable an expanded market release of the HALO System, which is designed to test asymptomatic women for the presence of atypical ductal hyperplasia (ADH), a known biomarker that can be a precursor to breast cancer. ADH is often found in the breast years earlier than a lesion might be found on a mammogram or a self exam, facilitating early follow-up and treatment or chemoprevention measures."

And if you are looking to contact NeoMatrix:

NeoMatrix
16 Technology Drive, Suite 118
Irvine, CA 92618

Telephone: (949) 753-7844
Toll-free: (800) 600-2613
FAX: (949) 753-7845

To contact us via e-mail: info@neomatrix.com

A new detection test for young women!

2007-12-09T14:52:00.000-08:00

This is really cool! A new test that can detect 95% of the most common type of breast cancer UP TO 7 YEARS BEFORE the cells actually become cancer! (So incredible is this new test, that I am seriously wondering WHY I have never heard of the test, and WHY the test was not offered to me at any time... I know, the mind boggles...)

Called the Halo Breast Pap Test, it is available now in Southern Nevada. And with a little digging around, now that I know what to look for, I came across a few other articles about the test as well. (And if you are wondering if the FDA has approved this test, the answer is YES IT HAS!)

The initial article that I came across was posted by the Las Vegas Now Eye Witness News titled: New Test for Detecting Breast Cancer . It was written by Paula Francis, and posted on December 07, 2007.

"The "Halo Breast Pap Test" goes beyond x-rays by detecting abnormal cells as much as eight years before they become cancer."

While not to be considered a replacement for mammography, it can be a real life saver for younger women.

Excerpted from the article:

"Dr. Volker said, "Mammography, which has been the gold standard and still is, is an imaging test. So it's actually looking in time backwards a little bit because we're detecting an early lump. Now, we have a test that we can actually get fluid and cells and look at it before it's a lump."

The Halo System uses a suction device to retrieve fluid from the breast ducts and the fluid is evaluated for abnormal cells. The test finds the most common type of cancer, but it does have limitations.

"It doesn't detect all breast cancer. It detects 95-percent of the most common breast cancer, which is ductal cancer," Dr. Volker continued. He said, "With the breast pap now, that 31-year-old patient or 32-year-old patient who has a family history who's concerned, now they have a screening test that they can latch on to."

These early abnormal cells don't always indicate the beginning stages of cancer. The patient will be watched closely, and an MRI or biopsy may eventually be recommended.

The main advantage of the Halo test is time, because these abnormal cells can take seven years to form a tumor that can be seen on a mammogram."

The Cancer Screening Program, formerly the Georgia Breast and Cervical Cancer Program (BCCP)

2007-11-30T15:59:00.000-08:00

If you are in the state of Georgia and are over the age of 40. Here is a link to get help with Mammograms and other female related exams. (Like a pap spear and pelvic exam.)

The Cancer Screening Program

Excerpted from the site:

"The Cancer Screening Program, formerly the Georgia Breast and Cervical Cancer Program (BCCP), was established in 1992 with funding from the Centers of Disease Control and Prevention and the State of Georgia. It was an expansion of the Cervical Cancer Screening Program, which was established in 1965. The Cancer Screening Program is a statewide breast and cervical cancer early detection program that is offered by more than 200 public health clinics and selected nonprofit agencies to low income, uninsured women."

Seriously, I am ready to scream here...

2007-11-29T15:52:00.000-08:00

You know that famous piece of art called The Scream by Edvard Munch? That is exactly what I look like inside my head. And if it would not frighten the neighbors, I would really be screaming right now. I am that frustrated.

I got a call back from Susan, the breast health case manager at the Mar Monte Planned Parenthood in Sunnyvale. She called to get a local address to send my mammogram appointment information to. (I had written down my mailing address and it is about 550 miles away. Not exactly local.) After explaining to her that I travel frequently and did not know where I would be between now and the appointment, but I would most certainly be in town for the appointment, (whenever that was) we decided that I would give her a local address that forward the information to me if need be.

I asked Susan how long it would be before I would get to be seen for the Mammogram and Ultrasound. (So I could continue to make sure that I was indeed in town.)

"It is just a Mammogram", she said.

"It is supposed to be for a Mammogram and an Ultrasound", I told her. "That is what the Doctor said."

Susan said that she had me listed for a Diagnostic Mammogram.

(What? I am 34 years old. Which in breast cancer years is practically infantile. My breasts are dense. They are huge. They defy gravity. Every medical professional I have ever seen has advised for an Ultrasound to go with the less than definitive Mammogram.)

"Fine. Any idea how soon I might be able to get that done?", I asked.

"Well it takes a few months for a regular Mammogram, but since you have an existing lump it may only be a couple of weeks. But I can't really say."

When I asked Susan if I was able to finance the tests another way, like through a credit card? (Or perhaps by picking dollar bills off of the money tree that I keep hidden in my closet, or the Leprechaun and his pot of gold that I keep stashed away in my sock drawer... I thought it, but refrained from saying it...) How long would it take to get a test then? Could I be seen right away? She really could not say about that either. She had no information on Mammograms that were outside of the Patsur Program.

I thanked her and we hung up. (And this was the same Susan that was so helpful when I called to get an appointment in the first place. Perhaps she is having an off day. Perhaps she found out just before my last call that she won an all-expense trip to Paris and was happy to help. But today's version of Susan was less than happy to help. And she was less than helpful. But I remained polite. After all this woman holds the fate of my breasts and my life in her hands. That is, unless I can locate someplace else to get a Mammogram and an Ultrasound.)

So I am ready to scream. I have never been so frustrated in my life. After this, if I am still alive and able to have kids, I will make a great parent. I will have the patience of Job, or a Buddhist Monk, or the Dali Lama, or Mother Teresa. (Though I bet at least Mother Teresa felt her patience tried. Have you seen the look in her eyes in some of those photos? I would be willing to stake my life on it that Mother Teresa wondered to herself "why?" at least once or twice. And if she didn't, then I would not be any worse off than I am right now. Waiting with my life in limbo.)

I want to go to Japan. I saw a thing on TV once about how in Japan, business men pay $20.00 for a plate, just so that they can throw it down this deep hole in the floor and watch it break into a million pieces. I bet that felt good. (I would throw my phone, but I need that. Someone else may call to tell me that I have even longer to wait before getting a Mammogram. You never know...)

What I don't get, is that I have a lump. A big lump. An ugly, scary, "suspicious" lump that you can feel even if you have never done a breast exam in your life. Really, it is that big. Apricot pits envy the size of my lump. And I can't get a Mammogram to save my life. (Now that's funny. Sick, twisted, and darkly funny. I may never use that phrase again. Puts things into perspective. "I can't get a Mammogram to save my life" is horrifying and possibly accurate. I can't get a good cup of coffee in this town to safe my life" is just insensitive, shallow, and rather melodramatic.)

Truthfully, I really don't know where to go from here. I am not admitting defeat. But right now, I just don't know what else to do, what rock to go looking under next, who to contact that I have not already, or what happens next.

Damn. There goes the anger and here comes the tears. (I'd ask for a tissue, but I think I would run the risk of being told no for some asinine reason. Like women under the age of 40 don't shed tears, so there is no need for you to waste a tissue on tears that can't possibly be streaming down your face, even though a blind man could reach over and confirm that yes, indeed, your cheeks are unexplainably wet... Horrible run on sentence, I know. But you get the point.) At least I still have my sense of humor... I guess it's not that bad after all...

What Is Breast Thermography?

2007-11-28T14:44:00.000-08:00

This article I discovered on the web tells you all about it. If you click here: What Is Breast Thermography? you will go right to the article so you can read the whole thing yourself. (It's filed under Breast Health on the main site if you are updating your searches.)

The short answer is:

"Thermography uses no painful breast compression, no radiation and is non-invasive. It is an ideal tool for mass screening not only for women over 40, but younger women as well. Breast pathologies have been found in women as young as 18 utilizing thermal imaging equipment. It would be a grave error to deny the efficacy of thermal imaging of the breast as an adjunctive diagnostic procedure in the overall management of the patient." (Dr. Alex Mostovoy)

"The procedure is both comfortable and safe, using no radiation or compression. By carefully examining changes in the temperature and blood vessels of the breasts, signs of possible cancer or pre-cancerous cell growth may be detected up to 10 years prior to being discovered using any other procedure. This provides for the earliest possible detection of cancer. Because of breast thermography’s extreme sensitivity, these temperature variations and vascular changes may be among the earliest signs of breast cancer and/or a pre-cancerous state of the breast." (Dr. Alex Mostovoy)

Seriously?

We need to get this information out. This is the first I have heard of this test. And it certainly was not offered to me by any of the Doctors that I have seen to date. Not a mention by any of the Foundations and Organizations that I contacted either. And what is the cost? Unfortunately the article does not mention that. Nor do they mention where you can get the test. (What is does do is tell you exactly how and why the test works, and that is really good information to take with you to the Doctors.)

If there is one thing I have learned from my battle to get assistance with my own breast cancer matters, it is to never assume that the person on the other end (of the line, the e-mail, the message board, the phone, the examining table) knows everything that you NEED them to know about breast cancer. There is too much out there. Too many programs that don't communicate to each other, too many articles to sift through, too many cases to get personal with any of them. It is just too much stuff. The only person that is going to really fight for your life is YOU. So take the information that you find, print it out and take it with you everywhere you go. Show it to every Doctor, Nurse, Case Manager. Show it to anyone that will listen. Don't let yourself fall through the cracks. It's your life, and it is important.

Okay, I'll hop off of the soapbox for now. But really, when I hear about tests like this, that are not automatically offered to people who need them, I just get so mad. (People, because 1% of breast cancer is discovered in men. Like I keep saying, no one is exempt.)

So take a look at the article. It is very informative. And it could save your life.

The page to Breast Health on the site: Naturally Savey.com

Naturally Savey.com home page link

I sent out a mass mailing letter to all the contacts in my address book...

2007-11-27T13:01:00.000-08:00

Getting BeCAUSE off the ground, up and running, and in the public eye has been harder than I thought. I never dreamed that it would consume me, my time, and my whole life. But it is a good thing. Important. And the devotion that I have towards this cause is deep. (Not to mention that every time I get a letter or message about what others think of what I am doing, I feel re-energized and my focus sharpens again to take on the endless tasks at hand.

I have been reading so much that my eyes want to fall out my head an roll around on the desktop... And I think I will always feel like there is still more to do with the site, or the content, or the awareness, or a million other things. (All of which is accurate right now. I do have a million things left to do with the foundation.) But despite all of the need-to-dos, I really feel that time is too important and the sooner that I spread the word about the BeCAUSE Breast Cancer Foundation and Coalition, the better.

To that end, I wrote a letter and mass mailed it to everyone in my address book. It is in hopes that they will pass it along, much like all of those chain letters and "thought you might like to see" messages that my Mother so much likes to forward around. They are not usually my cup of tea, and I typically delete them, but I know so many people that love that sort of letter just sitting in their in box. So I figured, why not send one? At least this mass mailing is for a really good cause...

Below is the letter that I sent out. (In the middle of the night, somewhere around 2am, when normal people not obsessed on saving the world are sleeping so that they are rested enough to actually do something productive, like save the world, in the morning when the sun comes shining through the windows...)

If you like it, copy it and forward it on to those that you know. Drop a comment here and let the world know that you support the BeCAUSE Breast Cancer Foundation and its goals. Like I say in the letter below, I appreciate any effort to spread the word.

The letter:

Hello all;

Sorry about the form letter format. But I really want to get the information out ASAP!

I am really excited to be turning my personal experiences into something positive and hopefully helping as many young women in the process. For those of you who are not yet aware, I recently had a breast cancer scare. While I facing this challenge, I saw that there was a huge need to be filled. To that end, I created the BeCAUSE Breast Cancer Foundation and Coalition . While the foundation is still in the beginning phases, I am pleased to say that I have a Blog link with much of the information available that is ready to become public.

* BeCAUSE breast cancer doesn't count candles...
* BeCAUSE breast cancer can't tell time...
* BeCAUSE breast cancer won't wait for the walk...
* BeCAUSE breast cancer doesn't play by the rules...
* BeCAUSE breast cancer can happen to anyone, not just your grandmother, your mother, or your aunt...
* BeCAUSE breast cancer can happen to it can happen to your daughter, your granddaughter, your sister, your friend...
* BeCAUSE it takes more than wishes to win out over breast cancer...

Because there is a severe lack of recognition for young women under the age of 35 and a horrible lack of programs available...

Please spread the word to everyone you know. Pass this e-mail along and request that your friends, family, and contacts do the same. The more notice the BeCAUSE Breast Cancer Foundation and Coalition receives, the more successful it will be, and the more lives it can help to save.

Here is the link to my new site: BeCAUSE Breast Cancer Foundation and Coalition

Urge everyone you know to go there! Post up comments. Make a donation. Cast your vote in the Bloggers Choice Awards for 2008 so that the site gets even more recognition. Forward the link to anyone willing to do a write up on the foundation and/or the site. ANYTHING YOU DO TO HELP will be appreciated more than you know.

Here is the link to cast your vote to make this the Best Charity Blog for 2008: Cast your vote for BeCAUSE Breast Cancer Foundation and Coalition

The higher the number of votes the more people know about this vitally important cause. With Blogging being such a huge part of today's culture, especially with the young women that I am so desperately trying to help, this may be one of the best forms of publicity that the BeCAUSE Breast Cancer Foundation and Coalition can get. My goal is to get 1,000 votes by Valentine's Day. A huge goal, but it can be done. Anyone can vote, and it is totally free. (There is a request for you to log in to vote, but that is to secure the accuracy of the votes cast. No spam is generated from registering and it take only second to do.)

Here is the link to the BeCAUSE Breast Cancer Foundation and Coalition official website: www.becausecancer.com

Right now, there is a holding page at this site. However, that will be changing in the near future. Keep this link handy and I'll let everyone know when it is up and fully functional. With the need so great, and the cause so urgent, I just was not willing to put off getting the information, education, support, assistance and awareness out to everyone.

Please take a look at the site. BeCAUSE Breast Cancer Foundation and Coalition

I hope you'll be impressed with what can be accomplished in a few short weeks. And you'll see just how serious I am about the BeCAUSE Breast Cancer Foundation and Coalition. Imagine what can happen next with your help

Most sincerely,
Alissa Leonard

The Beth Sanders Moore Young Breast Cancer Survivors' Program

2007-11-26T12:03:00.000-08:00

I came across The Beth Sanders Moore Young Breast Cancer Survivors' Program in an article of CancerWise. According to the article; "The Beth Sanders Moore Young Breast Cancer Survivors' Program is the nation’s first comprehensive educational and research program for young breast cancer survivors. It was launched in January 2005 and named for breast cancer survivor Beth Sanders Moore, who was diagnosed at the age of 45."

The mission of the program is to: Educate patients, the public and health care providers, conduct collaborative research, as well as increase awareness of young survivor issues.

The Beth Sanders Moore Young Breast Cancer Survivors' Program focuses on young women under the age of 45 with breast cancer.

The Beth Sanders Moore Young Breast Cancer Survivors' Program

The contact information for the Program is listed as:
The University of Texas M. D. Anderson Cancer Center
1515 Holcombe Blvd, Houston, TX 77030
1-800-392-1611 (USA)
1-713-792-6161(7)

The Beth Sanders Moore Young Breast Cancer Survivors' Program works in conjunction with the Anderson Network and The Pink Ribbon Project.

Excerpted from the Beth Sanders Moore Young Breast Cancer Survivors' Program website:

"The Young Breast Cancer Survivors' Program is under the direction of Karin Marie Hahn, M.D., assistant professor of breast medical oncology, who treats young breast cancer patients, including some who are pregnant. After identifying specific challenges faced by young patients, the program will develop education and research initiatives to address each need. Program goals include:

-Supporting research programs that focus on fertility and pregnancy issues among breast cancer survivors before, during and after cancer treatment, and collecting data on children exposed to chemotherapy in utero and those born after treatment.

-Developing an educational program that addresses the needs of young breast cancer survivors and provides access to educational materials presented in a variety of innovative methods.

-Sponsoring an annual presentation to educate healthcare providers on the needs of breast cancer survivors under the age of 45.

-Educating nurses, medical students, residents and fellows through a clinic, pertinent literature and a weekly survivor seminar series."

Information on the Pink Ribbon Program :

Excerpted from the website:

"Since 1991, the pink ribbon has symbolized breast cancer. Evelyn H. Lauder, founder and president of the Breast Cancer research Foundation says, "The pink ribbon stands for awareness. And it stands for the sisterhood that will help women survive – and conquer – this disease."

For more information on the Pink Ribbon Program:
(713) 792-JOIN
Located in Texas.

The Pink Ribbon Program is part of the Anderson Network. Also part of the Anderson Network is the Nellie B. Connally Breast Center.

"The Nellie B. Connally Breast Center is tickled pink thanks to the Pink Ribbon Volunteer Program established by the Department of Volunteer Services in the fall of 2001."

The Anderson Network ; a support group for cancer patients in Texas:
Patient & Caregiver Support Line:
800-345-6324
713-792-2553

Excerpted from the site:

"The Anderson Network is a unique cancer support group of more than 1,300 current and former patients who know just what you're going through, and can offer the right patient-to-patient advice and encouragement when you need it most. Our members are living proof that no matter what your diagnosis and treatment, there is always hope and the chance to live each day fully. "

Free Mammograms in 2008

2007-11-26T11:42:00.000-08:00

Here is an article I came across about FREE MAMMOGRAMS in 2008. Not geared towards young women specifically, it is a good place to start when looking for an organization that assists with low-cost and/or no-cost mammograms.

Desert Women for Equality will provide free mammograms at eight valley locations in 2008.

The Article was published in the Desert Sun on November 20th, 2007 and was written by Denise Goolsby

Excerpted from the article:

"Desert Women for Equality will offer free mammograms on Wednesday, Jan. 16 at Desert Hot Springs Senior Center, located at 11-777 West Dr., in Desert Hot Springs."

"Desert Women for Equality’s “We Care” Free Mobile Mammogram Clinics will also be held at the following locations in 2008:

Feb. 13: Coachella Senior Center
March 11: Cathedral City Gay Rainbow Senior Center
May 15: Indio Senior Center
July 12: La Quinta Senior Center
Aug. 13: Coachella Senior Center
Sept. 29: Palm Springs Desert AIDS Project Health Fair
Oct. 29: Palm Springs Desert Pride Community Center

"Uninsured and under-insured women who have not had a mammogram in one year are urged to make an appointment for a free mammogram."

For more information, or to schedule an appointment:
The Desert Pride Center:
327-2313 (no area code was given)

The Breast Cancer Site

2007-11-24T20:49:00.001-08:00

Here is a site that has a fundraiser that won't cost you a cent. All you do is click on the pink button and the site's sponsors make a donation. You can click on the button once a day. the more clicks on the button, the more funds are raised...

Sounds cool right?

I tried it. And it was easy. Just a click on the button on the top of the page and in an instant, I was done. (I now have the site added to my own personal bookmarks and am a clicking addict.)

All you have to do is click here: TheBreastCancerSite.com and then click on their pink button. Simple. Easy. And you can feel good that you took a moment to do something good.

But if you want to read a little about what The Breast Cancer Site has to say about the program, just look below at a couple of excerpts from their site.

"Your click on the "Click Here to Give - it's FREE" button helps fund free mammograms for women in need — low-income, inner-city and minority women whose awareness of breast cancer and opportunity for help is often limited. Your click is paid for by site sponsors, and mammogram funding is provided to clinics throughout the U.S. through the efforts of the National Breast Cancer Foundation."

"In addition to clicking the pink "Click Here to Give - it's FREE" button, visitors can help more by shopping in The Breast Cancer Site store. With each item purchased, shoppers generate funds that provide free mammograms for women in need. The store offers a wide array of items to show your support as well as fair-traded and handcrafted items from around the world that help families and communities pull themselves out of poverty."

"You can also help fund breast cancer research at the Mayo Clinic through our Gifts that Give More program, where 100% of donations will be matched by the Mayo Clinic to create an endowed breast cancer research position. You can also use Pink Ribbon Search to fund mammograms with every web search you make."

National Breast Cancer Foundation

BuzzCuts for the Cure

2007-11-23T17:59:00.000-08:00

BuzzCuts for the Cure...

A cute (if not overly long and repetitive at 6 minutes) U-Tube to get the word out about the fundraiser put on by UMass Boston 39 s Talk Radio Club benefiting BuzzCuts for a Cure. BuzzCuts is a charity haircutting event to benefit the Massachusetts Breast Cancer Coalition and the Silent Spring Institute.

The link to the post I found with the video: BuzzCuts

The event took place on November 20, 2007. And while I have not found any information as to how well they did, the cause is one that I support. (Not to mention that the two little boys featured in the video remind me of my brothers when they were goof-balls in elementary school.)

If you live in Massachusetts, this might be a starting point for you to get more information on programs available in your state. And while the Massachusetts Breast Cancer Coalition is geared towards changing legislature, there was a long list of board members that you can try to contact here: Massachusetts Breast Cancer Coalition Staff

The link to the Massachusetts Breast Cancer Coalition: Massachusetts Breast Cancer Coalition

The link to the Silent Spring Institute: Silent Spring Institute Which is another activist group dedicated to making changes in legislature.

From their website:
"SILENT SPRING INSTITUTE is a non-profit scientific research organization dedicated to identifying the links between the environment and women's health, especially breast cancer."

Feeling a little guilty

2007-11-22T14:27:00.000-08:00

I was so overwhelmed with it all, I just had to take a day off. And that made me feel a little guilty. Like one day away is going to be the end of it all. (Of course it might just be, but if that's the case, then I have other things to worry about too... And I am just not willing to think about them right now.)

Tomorrow is my appointment to start the screening process. (As in, to start the screening process all over AGAIN. For the second time.) It's frustrating, but at least it is a step in the right direction.

Really, I just want the tests done and over with so that I can move forward. I hate this waiting in limbo stuff... (And you can bet that "stuff" was not the first word that came into my mind here, but I am trying to keep this clean...)

It's like I have the heebie-jeebies... A phrase my Mother used to use that means I feel as if I have too much pent up energy, and my skin is crawling, and I just want to jump up and down, but I can't because then the world at large will think I am nuts... ("Look Mommy... There's a lady jumping up and down as if she is covered in spiders, but I don't see any..." "Don't point honey, it's not polite. And let's cross the street here just to be on the safe side.") Yeah... No thanks... I think I'll sit quietly in my chair instead...

I'll let you know how it all goes when I get back. I expect it will take some time. These sorts of clinics always do, and I was forewarned that I had paperwork to fill out. (Now that should be fun! I just love paperwork.)

I better go... Can you just tell that the feisty is coming out in a big way today? Yeah... Don't even get me started... I could bend your ear for hours...

Prescribed Reading

2007-11-22T11:51:00.000-08:00

This is a link to what is titled "Prescribed Reading".

The site has magazines and books recommended for women with breast cancer. While I have not read any of the publications (yet) and cannot vouch for them personally, I thought that you might be interested in what is being recommended as "good reads".

There are cookbooks, books to make you laugh, self-help type books, even a magazine subscription. Some of the titles are:

Intimacy After Cancer - A Woman's Guide by Dr. Sally Kydd & Dana Rowett
Intimacy after Cancer takes an in-depth look at how women respond to, deal with, and overcome barriers to intimacy after a life-changing cancer diagnosis.

Crazy Sexy Cancer Tips by Kris Carr
A cancer survival guidebook for young women with cancer. Carr captures personal stories and candid revelations in this scrapbook of advice, warnings and resources for the cancer patient.

Cancer Vixen: A True Story by Marisa Acocella Marchetto
Cartoonist Marisa Acocella Marchetto's graphic memoir about her battle with breast cancer. Poignant and funny, this inspiring story is made all the more powerful by Marchetto's cartoons. A must read!

It's Not About the Hair and Other Certainties of Life & Cancer by Debra Jarvis
Filled with spontaneity, spiritual depth and stories that will evoke laughter and tears, It's Not About the Hair tackles important life issues.

Women&Cancer - Print and Web Subscription Year Subscription - Magazine and WomenAndCancerMag.com
Women&Cancer offers all women a trusted resource covering prevention, management and wellness issues related to cancer, while fostering community and inspiring hope.

Here is the link to the site:
Prescribed Reading

Partners for a Cure

2007-11-22T11:44:00.001-08:00

Partners for a Cure, the Organization responsible for the Kimmie Cares Dolls benefits women going through breast cancer.

The proceeds raised through the Kimmie Cares Dolls goes towards women facing expensive treatments, not just on research.

The link to the site is:
Partners for a Cure

Kimmie Cares Dolls

2007-11-22T11:26:00.000-08:00

The name of the article is: "A Special Doll for a Special Person", and the link to the website is:
A Special Doll for a Special Person

The "Kimmie Cares” doll is a useful tool to speak to children about what to expect during treatment for breast cancer. It comes with a book (Written in English, Spanish and other languages.) Also on the article's web page, is a video that shows the news story about the Kimmie Cares doll. (I watched it, and thought it was very informative.) The doll comes in a wide choice of ethnic looks so finding one that looks like the person going through treatment should be fairly easy.

Excerpted from the article:

"Money from the dolls goes into a special foundation created in Kim's name called “Partners for a Cure.” Kalnow said her sister’s wish was to help mothers with some of the costs not always covered by medical insurance plans."

“It's not for research, it's to help the actual individual to pay for childcare, to pay for transportation,” she said."

The Partners for a Cure website is:
Kimmie Cares Dolls

Where you can purchase your own Kimmie Cares doll. (Right now the doll and book run about $40.00 as a set.)

Best Practices in Breast Cancer Advocacy Recognition for 2007

2007-11-19T13:35:00.001-08:00

The National Breast Cancer Coalition Fund published an article on their site about the top four grassroots organizations that have won their notice and recognition for Best Practices in Breast Cancer Advocacy this year.

The link to the article is:
Best Practices in Breast Cancer Advocacy Recognition for 2007

Excerpts are:

"Washington, D.C, November 5, 2007-The National Breast Cancer Coalition Fund (NBCCF) has announced the winners of the 2007 Best Practices in Breast Cancer Advocacy Awards. Four organizations are being recognized with this competitive award, which is given to consumer-led grassroots advocacy organizations whose strategic, high-impact programs are addressing critical issues in the systems of research, access to quality care and public policy in breast cancer. Each organization will receive $50,000."

"NBCCF is proud to present the Best Practices Awards to four outstanding breast cancer advocacy groups for their innovative, effective approaches," said Fran Visco, president of the National Breast Cancer Coalition Fund. "NBCCF firmly believes that in order to eradicate breast cancer, we must fundamentally change the systems of research and health care. Each of these organizations, as well as the seven organizations NBCCF recognized last year, has successfully brought meaningful change to the world of breast cancer and exemplifies advocacy in action. They have moved beyond raising awareness to bringing about significant change."

The 2007 Best Practices in Breast Cancer Advocacy winners are:

The Catherine Peachey Fund, Warsaw, IN-For its Banking on a Cure program, an innovative collaboration between consumers and scientists that resulted in the creation of a bank of annotated normal breast tissue samples that is being used for genomic, proteomic and epidemiologic studies. Ongoing efforts also include collection of tissue samples from women unaffected by breast cancer to explore the potential environmental causes of breast cancer.

Nueva Vida, Washington, D.C.-For its Research Participation, Development and Implementation program, a community participatory model that has increased the influence of Latinas affected by breast cancer in the design, conduct and accrual for research studies.

SHARE, New York, N.Y.-For its SHARE Leaders program, which has furthered the education of graduates of NBCC's Project LEAD and created opportunities for their meaningful involvement in research and policy.

Young Survival Coalition, New York, N.Y.-For its Young Women's Breast Cancer Registry program, a data source aimed at furthering research studies and, in particular, addressing causal factors of breast cancer in women younger than 40 years of age.

The Best Practices Awards program began in 2006. The first year's winners were:
Alamo Breast Cancer Foundation, San Antonio, Texas
Breast Cancer Alliance of Greater Cincinnati, Cincinnati, OH
Georgia Breast Cancer Coalition Fund, Atlanta, GA
Inflammatory Breast Cancer Research Foundation, Bainbridge Island, WA
Linda Creed Breast Cancer Foundation, Philadelphia, PA
New York State Breast Cancer Network, Spencer, N.Y.
The Rhode Island Breast Cancer Coalition, Coventry, R.I.

The Best Practices in Advocacy awards are made possible by a generous grant from the Breast Cancer Fund of the National Philanthropic Trust.

Contact: Sue Ducat (202) 973-0588
sducat@stopbreastcancer.org

Lemon Margaritas

2007-11-19T10:54:00.000-08:00

In all of the web surfing that I have been doing these days, I came across a great blog written by a cancer survivor... Her name is Susan Metters and her Blog is called: Lemon Margaritas : Musings of a Cancer Survivor Extraordinaire

And if you like what you read you can even subscribe to the Blog and receive her new post directly to your e-mail.

Planned Parenthood Mar Monte in Sunnyvale

2007-11-19T09:24:00.000-08:00

I called the Planned Parenthood Sunnyvale offices at 9:20. I reached an automated answering service that gave me the option to speak to a representative. I pressed this option (zero) and waited.

The number for the Planned Parenthood Sunnyvale Offices (Mar Monte)
(408) 739-5151

To schedule an appointment online:
www.ppmarmonte.org

(Or you can drop in on Wednesdays for most services during business hours of 10AM and 5PM.)

After about ten minutes on hold, I spoke to Susan, who happens to be the person in charge of the breast cancer screenings at the Mar Monte (Sunnyvale) offices.

She took the time to explain the process for this office to me:

-Schedule another breast exam with this Planned Parenthood office.
-Have the referral faxed to them, if possible, from the other Planned Parenthood or medical offices.
-If this office feels the need for a Mammogram, Susan gets the paperwork ready and then sends it over to the Patsur Program in Menlo Park. (For women under the age of 40.)
-The doctors and surgical team at the Patsur Program review the findings and approve selected cases. (Though I do not know how many cases they approve.)
-If the case is selected for approval, then Rena, in Palo Alto, the Director of the Patsur Program will call you back to schedule an appointment with them.

Susan did warn me that this is a lengthy process and could take several weeks before I would hear from the Patsur Program, let alone be seen by them. (But this has been the first YES I have gotten.)

I scheduled my appointment with Susan for a clinician to see me this Friday at 10:30AM. I was advised that I would need to fill out paperwork, and to arrive early to do so.

The offices for the Sunnyvale (Mar Monte) Planned Parenthood are:
604 E. Evelyn Ave. (On the corner of Fair Oaks)

The Kelly Rooney Foundation

2007-11-18T21:39:00.000-08:00

The foundation that is attached to the "Save 2nd Base" tee shirts, the Kelly Rooney Foundation can be found at this link:
http://www.kellyrooney.org/

This foundation says that they are focused on YOUNG WOMEN with breast cancer... An excerpt from the site:

"The Kelly Rooney Foundation (KRF) was established to eradicate breast cancer in young women. Through cutting-edge research and comprehensive awareness & education programs, the Foundation focuses intently on breast cancer prevention in young women and the unique challenges that young women face when diagnosed with breast cancer."

The Kelly Rooney Foundation is a 501(c)(3) Publicly Supported Non Profit Organization Incorporated in the State of Pennsylvania. They are proud to announce the creation of The Kelly Rooney Breast Cancer Research Fund at the Abramson Cancer Center of the University of Pennsylvania, where one of their key focuses is to improve breast cancer detection— including better imaging techniques for young women.

If you are located in the state of Pennsylvania, this may be an avenue for you to look further into...

To contact them:
The Kelly Rooney Foundation
PO Box 158
Wayne, PA 19087
Telephone: (610) 745-2002
Email: support@kellyrooney.com

Save 2nd Base

2007-11-18T14:37:00.000-08:00

Here is a link to Save 2nd Base... A cause for breast cancer that has maintained it's sense of humor... The link:
http://www.save2ndbase.com/

50% of the profits from their humorous tee shirt sales benefit the Kelly Rooney Foundation.

Excerpted from the site:

"You remember the phrase from when we were kids; now we use it to battle breast cancer. “Save 2nd Base” was a team name we coined when we participated in the Breast Cancer 3-Day 60 mile Walk."

"Breast cancer is no laughing matter, but since we have lost so many wonderful women (and men) to this disease we decided to fight it with laughter."

State of New York: Cancer Detection Program

2007-11-18T14:24:00.000-08:00

Here is a link for the state of New York's Cancer Detection Program flyer:
http://www.health.state.ny.us/nysdoh/cancer/center/0418.pdf

The phone number for the Cancer Information Service is:
1-800-4CANCER

The flyer also recommends to contact your local "Healthy Women Partnership" in the state of New York.

Bras for the Cause

2007-11-18T14:16:00.000-08:00

I came across a link in the Des Moines Register for a fundraiser in the state of Iowa called "bras for the Cause".

The link is:
http://desmoinesregister.com/apps/pbcs.dll/article?AID=/20071109/LIFE02/711090360/1039/LIFE

The article was posted on November 9,2007. It contains many great photos of the bras that will be auctioned off at the first annual even to benefit the funding of women in Iowa who need screening and treatment.

Team Shan

2007-11-18T14:09:00.000-08:00

I found this article online... For the London Free Press, published on November 17, 2007. It is about a Canadian campaign in Ontario called: Team Shan and supports young women between the ages of 16-29 and breast cancer/ aweness issues...

The link to the article I found is:
http://lfpress.ca/newsstand/News/Local/2007/11/17/4662782-sun.html

Excerpted from the article:

"Young women are a gap in breast cancer understanding and are quite vulnerable to the disease, she said. In Ontario this year alone, 400 women between the ages of 15 and 39 will be diagnosed with breast cancer and 40 of them will die, she said."

"The Canadian Breast Cancer Foundation provided $100,000 for the multi-media project. The campaign, begun last month, wraps up the end of December."

For more information on breast cancer in young women and the Team Shan campaign, visit:
www.teamshan.ca

Gal to Gal Virtual Walk 2007

2007-11-15T11:41:00.000-08:00

This is a website for a really cute idea that supports stage-four breast cancer. It is called the Gal to Gal Walk for Wishes. It is a virtual walk where, for a five dollars donation, you create your own virtual you that will join the other walkers across the screen. when you hover over the different walkers, it tells you who they are walking for. The link is:
https://www.galtogalwalk.org/

And... It was even featured on Oprah...

The Breast Cancer Fund

2007-11-15T11:32:00.000-08:00

The homepage link is:
http://www.breastcancerfund.org/site/pp.asp?c=kwKXLdPaE&b=43969

This is an Activist Organization. The link to the page that tells about them is:
http://www.breastcancerfund.org/site/pp.asp?c=kwKXLdPaE&b=44850

Excerpted from that page:

"Breast Cancer Fund is the leading national organization focused on identifying the environmental causes of breast cancer and preventing the disease.

Only 10 percent of breast cancers are genetic, and science increasingly points to environmental factors in the sharp rise of breast cancer incidence. For this reason, the Breast Cancer Fund has adopted the bold mission to eliminate the environmental causes of the disease, including toxic chemicals and radiation. Through public education, policy initiatives, outdoor challenges and other innovative campaigns, the Breast Cancer Fund mobilizes the public to secure the changes needed to stop this devastating epidemic."

They have a tab labeled "Legislative Toolkit" The link is:
http://www.breastcancerfund.org/site/pp.asp?c=kwKXLdPaE&b=2060995

It looks like a good place to start if you want to take action against external and non-genetic causes of breast cancer.

California Pacific Medical Center/ The Breast Health Center

2007-11-15T11:24:00.000-08:00

The home page link is:
http://www.cpmc.org/

The page about "Young Adult" contains a variety of information, but nothing about breast cancer. But in case you do want it, the link is:
http://www.cancercenter.com/breast-cancer/treatments.cfm

The page on "Breast Health" has basic information on the types of tests. The link is:
http://www.cpmc.org/services/women/breast/default.html

The Breast Health Center:
California Campus
3698 California St., 2nd Floor
San Francisco, CA 94118
415-600-6474 for more information or mammogram appointments

There is no mention of ages or cost or restrictions. I will place a call and let you know what I find out.

Breast Cancer Treatment Centers of America

2007-11-15T09:54:00.000-08:00

I was sent a suggestion to try looking at the Breast Cancer Centers for America for assistance with a Mammogram and Ultrasound.

The link is:
http://www.cancercenter.com/breast-cancer/treatments.cfm

However, this is more a place for AFTER you have the diagnosis of breast cancer. Not for taking tests or for finding out if you actually HAVE cancer.

This was in my in-box today from: the Daily OM

2007-11-15T09:53:00.000-08:00

November 15, 2007
Woman
Embracing Womanhood

There are many ways and myriad reasons for women to honor and embrace all that they are. And when any individual woman chooses to do so, all women collectively move closer to becoming what they are truly capable of being. By honoring her experience and being willing to share it with others—both male and female—she teaches as she learns. When she can trust herself and her inner voice, she teaches those around her to trust her as well. Clasping hands with family members and friends, coworkers and strangers in a shared walk through the journey of life, she allows all to see the self-respect she possesses and accepts their respect, too, that is offered through look, word, and deed.

When a woman can look back into her past, doing so without regret and instead seeing only lessons that brought her to her current strength and wisdom, she embraces the fullness of her experience. She helps those around her to build upon the past as she does. And when she chooses to create her desires, she places her power in the present and moves forward with life into the future.

Seeing her own divinity, a woman learns to recognize the divinity in all women. She then can see her body as a temple, appreciating its feminine form and function, regardless of what age or stage of life she finds herself. She can enjoy all that it brings to her experience and appreciate other women and their experiences as well. Rather than seeing other women as competition, she can look around her to see the cycle of life reflected in the beauty of her sisters, reminding her of her own radiance should she ever forget. She can then celebrate all the many aspects that make her a being worthy of praise, dancing to express the physical, speaking proudly to express her intellect, sharing her emotions, and leading the way with her spiritual guidance. Embracing her womanhood, she reveals the facets that allow her to shine with the beauty and strength of a diamond to illuminate her world.

YWCA/ ENCOREplus

2007-11-14T16:14:00.000-08:00

The representative from the Susan G. Komen Foundation mentioned the YWCA. However they are fairly sticky about the age limitations. But I went ahead and pulled up the website anyway. The program is called ENCOREplus.

The main page is:
http://www.ywca.org/site/pp.asp?c=djISI6PIKpG&b=284783

And the page for Breast Cancer Screening is:
http://www.ywca.org/site/pp.asp?c=djISI6PIKpG&b=297532

The local Office for where I am currently at is:
YWCA Silicon Valley
375 S 3rd St., San Jose , CA 95112-3649
Phone: 408-295-4011 Fax: 408-295-0608

Where you go to find yours is here:
http://www.ywca.org/siteapps/custom/ywca/local.aspx?c=djISI6PIKpG&b=281414

FDA: the Food and Drug Administration

2007-11-14T16:00:00.000-08:00

FDA. (As in the Food and Drug Administration) They have a list of certified Mammography clinics that the Komen Foundation uses to refer women to. The number for the FDA that the Komen Foundation uses is: (800)363-2068.

I searched the FDA on-line. What I found:

Breast Health and Screening Program

2007-11-14T15:43:00.000-08:00

Breast Health and Screening Program
May View Community Health Center
(650) 327-1223

The Breast Health and Screening Program/ May View Community Health Center asked if I wanted Palo Alto or Mountain View. I selected Mountain View and was transfered before I could hardly explain what it was that I needed. The Mountain View connection allowed me to explain what is was I needed; a Mammogram and an Ultrasound, and then said that they were just a small clinic that did not do those things. They said that I needed to call the San Jose Hospital. Which I did. The number is: (408)885-5000.

San Jose Hospital rang me through to an automated service, which I bypassed most of by speaking the word "OPERATOR" into the phone loudly and clearly. I was transfered to the Operator. I explained what I was looking for and was transfered to the Radiology Department. I explained to the woman answering the Department line that I was looking for a Mammogram and an Ultrasound. She asked for the Regular Doctor's referral. I explained that I had started at Planned Parenthood, was referred to Susan G. Komen, who referred me to the SF Affiliate Offices for Susan G. Komen, who referred me to the Breast Health Screening Program and the May View Community Health Center, who referred me to the Mountain View Clinic, who referred me to the San Jose Hospital and that the operator had transfered me to her Department; the Department of Radiology. I was put on hold. And then I had dead air. (Yeah... It's like some horrible Comedy of Errors, only this is really not funny...)

Nothing came up when I searched them on-line.

Community Breast Health Project

2007-11-14T15:42:00.000-08:00

Community Breast Health Project
the Gabriella Patser Project
(650) 326-6683- This is a WRONG NUMBER.

I called the number I was given for the Community Breast Health Project/ the Gabriella Patser Project: (650) 326-6683- This is a WRONG NUMBER. A very nice woman said hello and said I had the wrong number. She sounded as if this was not a surprise mis-dial. Bummer. I tried to look up the Gabriella Patser Project on-line, but all I found was for a program for 2006. Another Bummer.

Community Health Partnership

2007-11-14T15:31:00.000-08:00

Community Health Partnership
Community Mammography Access Project
(408)556-6605

I called the Community Health Partnership/ Community Mammography Access Project at: (408)556-6605. I reached an automated answering message that gave me the business hours of 9-5PM. I called at 2:30PM. It gave an option to leave a message, but then disconnected. I was unable to leave a message.

Since I now had another organization's name, I searched online. I found:
Community Health Partnership. the homepage link is: http://www.chpscc.org/

The link for the page about the Community Mammography Access Project is:
http://www.chpscc.org/whpCMAP.htm

The Community Health Partnership refers to the Community Mammography Access Project as CMAP. The contact information for CMAP is:

CMAP Coordinator
TA : Shermineh Jafarieh, M.S.
CMAP Coordinator with the Women's Health Partnership
Office: (408) 556-6605 x 215
Cell: (949) 394-9484
Fax: (408) 556-6617
Email: Shermineh@chpscc.org

I found the rest of the site to be confusing and will have to contact the CMAP Coordinator for more information.

Is this really that difficult?

2007-11-14T13:45:00.000-08:00

Seems to be so.

All I need is a Mammogram and an Ultrasound. Sounds simple right? Wrong.

I don't have health insurance, so WHERE do I go to get a Mammogram and an Ultrasound? Regular hospitals and clinics want me to have a referral form one of their doctors. But I do not have a doctor with them, let alone a regular doctor. So the regular hospital and clinic route is out.

I am under 35 years of age. So far, I have spent hundreds of hours searching the internet and countless hours on the phone trying to get some sort of useful information on even just WHERE to go to get a Mammogram and an Ultrasound. I was searching for low-cost and no-cost options, but I can't find a place to perform the tests no matter what the cost is.

Every number is a dead end. Each web address is less useful than the one before it. Is this REALLY that difficult to do?

Seriously. I am at my wits end, and I am no closer to getting this taken care of than I was before this all started. It is the end of the day for the places I can contact, though I have currently run out of options and leads. It just feels like yet another day WASTED.

So...

Today:

I spoke to the San Francisco Affiliation Offices for the Susan G. Komen Foundation. I was given three names and numbers. They are:

Breast Health and Screening Program
May View Community Health Center
(650) 327-1223

Community Breast Health Project
the Gabriella Patser Project
(650) 326-6683- This is a WRONG NUMBER.

Community Health Partnership
Community Mammography Access Project
(408)556-6605

The Breast Health and Screening Program/ May View Community Health Center asked if I wanted Palo Alto or Mountain View. I selected Mountain View and was transfered before I could hardly explain what it was that I needed. The Mountain View connection allowed me to explain what is was I needed; a Mammogram and an Ultrasound, and then said that they were just a small clinic that did not do those things. They said that I needed to call the San Jose Hospital. Which I did. The number is: (408)885-5000.

San Jose Hospital rang me through to an automated service, which I bypassed most of by speaking the word "OPERATOR" into the phone loudly and clearly. I was transfered to the Operator. I explained what I was looking for and was transfered to the Radiology Department. I explained to the woman answering the Department line that I was looking for a Mammogram and an Ultrasound. She asked for the Regular Doctor's referral. I explained that I had started at Planned Parenthood, was referred to Susan G. Komen, who referred me to the SF Affiliate Offices for Susan G. Komen, who referred me to the Breast Health Screening Program and the May View Community Health Center, who referred me to the Mountain View Clinic, who referred me to the San Jose Hospital and that the operator had transfered me to her Department; the Department of Radiology. I was put on hold. And then I had dead air. (Yeah... It's like some horrible Comedy of Errors, only this is really not funny...)

I called the number I was given for the Community Breast Health Project/ the Gabriella Patser Project: (650) 326-6683- This is a WRONG NUMBER. A very nice woman said hello and said I had the wrong number. She sounded as if this was not a surprise mis-dial. Bummer. I tried to look up the Gabriella Patser Project on-line, but all I found was for a program for 2006. Another Bummer.

I called the Community Health Partnership/ Community Mammography Access Project at: (408)556-6605. I reached an automated answering message that gave me the business hours of 9-5PM. I called at 2:30PM. It gave an option to leave a message, but then disconnected. I was unable to leave a message.

Drafting an e-mail request for information assistance

2007-11-14T11:14:00.000-08:00

I sent out the following e-mail today to my family and friends. It is my hope that they will add to the information and pass it along. I also hope that they forward it to others. (You are welcome to use this letter as a template for your own needs. I would appreciate it if you would forward any information that you have along to me so that I may post it up here.)

Dear Family and Friends;

I am currently facing the challenge of finding a resource for free and/or low cost Mammograms as well as Ultrasounds for women UNDER the age of 35.

Time is of the essence and I am asking for your help. If you have any information about free and/or low cost Mammograms as well as Ultrasounds for women UNDER the age of 35, please let me know. Also, if you would, I'd really appreciate it if you'd please ask anyone that you can think of for this information as well.

So far, I have run into many dead-ends.

American Cancer Society is currently out of funding.
California Cancer Detection Section/ Every Woman Counts is for women over the age of 40.
Mammogram Voucher Program is for women over the age of 40.
National Breast Cancer Foundation is an Activist Coalition and does not provide the services I am inquiring about.
Saint Mary's Health Care is for women in the state of MI
Sharp Mary Birch Hospital for Women does not provide these services without a Sharp Physician's referral. They are not free or low charge services.
Susan G. Komen for the Cure is for women over the age of 35.

If you know of anything, please let me know.
Thank you,
Alissa

Susan G. Komen: San Francisco Affiliate

2007-11-14T09:32:00.000-08:00

I was directed to contact the Susan G. Komen San Francisco Affiliate Offices. Their phone number is: (415) 397-8812 M-F 9-5:30 PM.

I placed a call at 9:30 this morning to the San Francisco Affiliate for the Susan G. Komen Foundation. I reached a very clear spoken automated message instructing me to leave my name, contact number and brief message. I was informed that I would receive a call back. But how soon was not specified.

I left a message with my name and cell phone number, as well as requesting information about free of charge and/or low cost Mammograms as well as Ultrasounds. I also described my condition and that I had been seen by Planned Parenthood. At the end, I included that I would like information on Mammogram facilities in the area regardless of cost as I was running out of time.

I am waiting to hear back from them.

One of those mornings...

2007-11-14T08:36:00.000-08:00

I am having one of those mornings. It is something that I am going to have to harness. Turn it from a morning to a moment. I need to develop a thicker skin.

I just got off the phone with someone from the "Every Woman Counts" program. And it is not true. Every Woman DOES NOT Count. Only those over the age of 40. The program is not available to those under the age of 40. Like Cancer waits for a specific date on the calendar... (Yeah, I wish... Then I could schedule it in somewhere between having my not-yet-conceived children grow into maturity and death. That would work for me. Or how about two weeks before my 94th birthday instead?)

Grrr...

I was given the number for the American Breast Cancer Foundation. That was at the top of my list to call at 9am today. But I was forewarned that the American Breast Cancer Foundation is not accepting any new clients at this time. Clients? It turns out that recipients and patients are referred to as "clients". There is a waiting list, though it is long. I can add my name to that if I like. Why is there a waiting list? Why no new "clients"? Because there are no funds at this time. The Foundation is out of money.

Ohhh...

I took a moment when I hung up the phone to look at the new Lucky magazine. It is my favorite thing in the world. It used to bring me so much pleasure to follow the trends and see what the pretties are and to follow the prices. But this morning all I saw was a Re'Vive Weekly Treatment Facial Mask that is selling for $190.00. The only thought that passed through my head was $190.00 for facial cream. If you bought the $20.00 facial cream, you would have enough left over to make a difference in one of a million different ways. And then I thought that I must really be down to confuse a facial mask with facial cream... And then I just stopped caring. About the contents of the magazine that is...

I have been spending these past days since my initial breast cancer post doing a ton of research. As if a fire has been lit under my feet and I can't slow down for fear of the pain if I fail. I have made steps towards doing some great things. I am starting a Foundation as well as an Action Organization/Coalition for those who follow. I have tortured my brother, The Boyfriend, and The Boyfriend's out-of-town guest with my obsession and upset rants. (Upset is different than angry. And I have been upset. I think I may do better to get angry though. At least for a while.)

I have been up to my eyeballs in looking for my own needs, and drowning (by choice as well as the deep feeling of necessity) in the mass of information that is not pertinent to my cause. (Though last night and this morning, I have made some important discoveries that affect the Activist and Legislative end.)

It saddens me to think that things are the way that they are. That I find out horrible facts and can no longer bury my head in the sand in blissful ignorance. Yet one more layer of innocence is being stripped away. And it hurts. (But at this rate, I might actually BECOME one of those wise old women and truly be able to claim the wise part.)

What I fear is driving away my friends with this obsession to make changes and to amend a horrible over-site. I worry that I will become one of those dull individuals that has nothing left to say about anything outside of my cause. I don't want this to be my entire life. I just want this to be something important that I was meant to do with my life. And there is a difference. But right now, this CONSUMES me. I don't know which will kill me first, the cancer, or the cause. Neither. But it feels that way.

Breathe...

Well... Off to more calls. More research. More dead ends. More exciting discoveries. More information. And hopefully, one more step forward.

National Breast Cancer Coalition

2007-11-14T08:07:00.000-08:00

The National Breast Cancer Coalition is another group focused on advocacy and changing legislature. The link to their homepage is:
http://www.natlbcc.org/

For information about the National Breast Cancer Coalition, also known by the acronym; NBCC, try this link:
http://www.natlbcc.org/bin/index.asp?strid=651&btnid=2&depid=3

Excerpted from the page listed above:

Background:

"Since its inception in 1991, the National Breast Cancer Coalition (NBCC) has been committed to guaranteed access to quality healthcare for all as a top public policy priority. Healthcare must be available to all individuals regardless of their ability to pay. The Coalition's mission is to eradicate breast cancer. We believe the only way to achieve our mission is to ensure access to comprehensive, quality care for all."

What I liked about this organization best is their Annual Advocacy Training Conference. The link for the 2008 Conference, to be held in Washington DC, April 26-29 2008 is:
http://www.natlbcc.org/bin/index.asp?Strid=713&depid=5

To take a look at what workshops were offered at the 2007 Conference, as well as read some of the publishings, the link is:
http://www.natlbcc.org/bin/index.asp?Strid=933&depid=5

For a list and information on their education and training programs:
http://www.natlbcc.org/bin/index.asp?strid=554&depid=7&btnid=0

AS the National breast Cancer Coalition says: " Revolution is not a one time event".

Y-ME National Breast Cancer Organization

2007-11-14T08:00:00.000-08:00

This is an excellent site for getting up to date information about the things anyone can do to change and effect the legislature. A comprehensive Advocacy site, the link is:

http://www.y-me.org/index.php

I was unable to locate any information about Mammograms and screening assistance. This is more a source to make waves and have direct impact outside of the fight to survive breast cancer.

The advocacy page link is:
http://www.capwiz.com/y-me/home/

To find out which elected officials represent you, click on the link below and type in your zip code:
http://www.capwiz.com/y-me/dbq/officials/

Young Survival Coalition

2007-11-13T21:52:00.000-08:00

The message that I sent to them:

"To whom it may concern;

I am so happy to finally locate your website. I have been searching for information regarding breast cancer in women under the age of 35 as well as 40 for several weeks. After much digging, I reached your wonderful website.

Thank you so much for the statistical information, as well as the information on changing current legislature. I have yet to come across anything as useful, on any other website, at any time.

I thought you would like to know how happy I was to read the contents of your pages and links, though it saddens me at how difficult it was to locate you and the persistence in searching involved.

Again, my sincerest thanks,
Alissa Leonard"

The link to the Young Survival Coalition:
http://www.youngsurvival.org/

The YSC Mission Statement:

"The Young Survival Coalition (YSC) is the only international, non-profit network of breast cancer survivors and supporters dedicated to the concerns and issues that are unique to young women and breast cancer. Through action, advocacy and awareness, the YSC seeks to educate the medical, research, breast cancer and legislative communities and to persuade them to address breast cancer in women 40 and under. The YSC also serves as a point of contact for young women living with breast cancer."

From the YSC background page:
http://www.youngsurvival.org/affiliates/

"The organization was founded by three young breast cancer survivors in 1998. All under the age of 35 at diagnosis, they were discouraged by the lack of information and resources available to young women, and concerned about the under-representation of young women in breast cancer studies.

Unlike their post-menopausal counterparts, young women diagnosed with breast cancer face higher mortality rates, fertility issues and the possibility and ramifications of early menopause. The YSC seeks to change the face of breast cancer by: advocating to increase the number of studies about young women and breast cancer; educating young women about the importance of breast self-examination and early detection; and being a point of contact for other young women with breast cancer.

"'Young women don't get breast cancer' is a refrain we hear frequently," says Randi Rosenberg, president of the YSC. "Yet, here we are, right in front of the medical and research communities representing the global voice of all young women living with breast cancer. If they begin studying breast cancer in young women, they may unlock the key to why all women are diagnosed with this deadly disease."

Today, the YSC is a growing international group of thousands of survivors and supporters. Embracing the motto, "Action, Advocacy, Awareness," members attend conferences; lobby federal and state legislators; speak at universities, colleges, and health fairs; and run an annual awareness campaign targeted at the medical community - encouraging doctors and researchers to focus more resources on this underserved segment of the population. The YSC also strives to educate and support young women living with a diagnosis of breast cancer.

The Young Survival Coalition is based in New York City and has local groups throughout the United States."

American Breast Cancer Foundation

2007-11-13T21:36:00.000-08:00

I (finally)located the American Breast Cancer Foundation. I say finally because the site does not show up immediately in web searches. Especially when searching for a focus of UNDER 40 or UNDER 35.

The link to the site is:
http://www.abcf.org/

The link to the page that has promising information is:
http://www.abcf.org/index.cfm?fuseaction=dsp&page=mammogram

The page reads:
"The American Breast Cancer Foundation provides financial assistance to uninsured and underinsured women and men of all ages for breast cancer testing. This includes annual screenings for women over 40, as well as support services for breast cancer patients."

"Financial assistance grants are available to eligible women and men to assist with the following diagnostic tests and services:"

Clinical Breast Exams
Screening and Diagnostic Mammograms
Ultrasounds
Surgical Consultations
Emergency Biopsies

The Key to Life Breast Cancer Screening Assistance Program can help, call today for a confidential interview. Toll free Enrollment Hotline 877-Key-2-Life (877-539-2543)

Hooray! A REAL possibility! No age restrictions. No gender restrictions. After all my searching, can this be real? I will call them tomorrow and report back.

Also, upon further clicking at the American Breast Cancer Foundation site, I came across this comprehensive page for RESOURCES:
http://www.abcf.org/index.cfm?fuseaction=dsp&page=resources

Susan G. Komen Foundation

2007-11-13T16:11:00.000-08:00

I called the Susan G. Komen Foundation. Even though I already know that I am too young for their programs, I figured that maybe I might get lucky. And I did.

I reached an automated line that sent me to a real person. Maryanne. She was very helpful. She asked about the condition. And said that usually they refer younger women to Planned Parenthood. But since that was where I had started from, and Planned Parenthood does not do Mammography or Ultrasounds, we were at a different square one.

But Maryanne thinks outside of the box. (I liked Maryanne, can you tell?)She gave me the number to a local Komen Affiliate to call. (In San Francisco the number is: (415) 397-8812.) Maryanne said to ask the person answering the line about free of charge or low cost Mammograms and Ultrasounds. They should be able to direct me to a local facility or clinic that performs these tests.

If that did not work out, due to my age, then I should call the American Cancer Society next. The number is: (800) ACS-2345

She mentioned the YWCA. However they are fairly sticky about the age limitations. But I went ahead and pulled up the website anyway. The program is called ENCOREplus.

The main page is:
http://www.ywca.org/site/pp.asp?c=djISI6PIKpG&b=284783

And the page for Breast Cancer Screening is:
http://www.ywca.org/site/pp.asp?c=djISI6PIKpG&b=297532

The local Office for where I am currently at is:
YWCA Silicon Valley
375 S 3rd St., San Jose , CA 95112-3649
Phone: 408-295-4011 Fax: 408-295-0608

Where you go to find yours is here:
http://www.ywca.org/siteapps/custom/ywca/local.aspx?c=djISI6PIKpG&b=281414

The last place that Maryanne suggested that I try contacting was the FDA. (As in the Food and Drug Administration) They have a list of certified Mammography clinics that the Komen Foundation uses to refer women to. The number for the FDA that the Komen Foundation uses is: (800)363-2068.

And that is sadly all I have today. But I am pushing onward. More calls. And hopefully more directions to look into. (And Maryanne said that she would call me back if she was able to find out anything more that might be useful. For some reason, I actually do believe her. She was wonderful!)

Center for Disease Control and Prevention

2007-11-13T16:07:00.000-08:00

I called the Center for Disease Control and Prevention.
1-800-511-2300
M-F 9-7PM

That was when I realized that it was the SAME telephone number as the California Dept of Health Services/ Every Woman Counts Program. (Though they have different time of operation... The California Dept of Health Services/ Every Woman Counts Program hours being M-F 8:30-5PM. Hmmm...)
I left another message and call back number. I was already on the line. This IS important. Let's see if they call back.

California Dept of Health Services/ Every Woman Counts

2007-11-13T15:58:00.000-08:00

National Breast Cancer Foundation

2007-11-13T15:33:00.000-08:00

The link to the site is:
http://www.nationalbreastcancer.org/

On the front of the home page it reads:
"The National Breast Cancer Foundation appreciates your gifts to continue our ongoing educational programs and funding for free mammograms to women who cannot afford them. It is our mission to provide them with help for today…hope for tomorrow."

I looked at the Mission Statement. It reads:
"NBCF Mission: The National Breast Cancer Foundation mission is to save lives by increasing awareness of breast cancer through education and by providing mammograms for those in need."

Though try as I might, I found no information on how to actually receive a free Mammogram.

What is does say, way off on the right side, in small print that gets smaller and smaller the further you read is this:
"NBCF does not provide grants for mammograms directly to individuals. We give grants through designated programs for low-income and uninsured women. For information about free mammograms, contact the Department of Health and Human Services."

So what they are telling me is that there is yet another breadcrumb to follow, but no real assistance or useful information is being provided. Gee... Thanks... If you are wondering, like me, what designated programs and how to reach them... Then you'll have to wait. I have sent en e-mail requesting this information. We shall see if I get a reply and what it reveals if I do.

What I wrote to them: "Which are the designated programs that you referenced on your site under free mammograms? How do I get in contact with these programs? Are there age restrictions for eligibility of assistance? Can you help point me in a direction to receive information regarding a free and/or low-cost Mammogram and/or Ultrasound? Is there any website aside from the Department of Health and Human Services that you can point me towards for all of the above information?"

Oh, and of course when I clicked on the link for the Department of Health and Human Services, it sent me right back to the least useful and responsive site I have come across to date. But just in case you might want it, here is the link: http://www.cdc.gov/cancer/nbccedp/index.htm

Sharp Mary Birch Hospital

2007-11-13T10:49:00.000-08:00

A friend of mine sent me the link to the Sharp Mary Birch Hospital. I don't know yet if there is more than one location. The Mary Birch that I am familiar with is located in San Diego and it is a HUGE facility. So I have one more place to call and find out what programs they have available for young women. I'll post up the information as I receive it. So far this is what I have is listed below.

Here is the link:
http://www.sharp.com/hospital/index.cfm?id=918

Here is the link for the Cancer Center at Sharp Memorial Outpatient Pavilion:
http://www.sharp.com/hospital/index.cfm?id=498

Here is the link for the page that has some information of the services provided involving Women's Health and Cancer:
http://www.sharp.com/hospital/index.cfm?id=479

The phone number to speak to a physician referral nurse:
1-800-82-SHARP (1-800-827-4277)
8 am to 6 pm, Monday through Friday.
Or look online:
https://www.82sharp.sharp.com/physiciansearch.asp?dblink=1&spec=unspecified&wt_source=unspecified

The phone number for Breast Cancer Center at Sharp Memorial Hospital:
858-939-5004 or 858-939-5005

The highlights from the site are:

Imaging Services
We utilize the latest technology for cancer detection in our Sharp Mary Birch Women's Outpatient Imaging Center, located in the new Sharp Memorial Outpatient Pavilion. These powerful, innovative screening tools include:

*
Computer-aided diagnostic mammography
*
Diamond mammography platform
*
Stereotactic breast biopsy unit
*
Computerized radiology
*
16-view computerized tomography (CT) scanner
*
Picture archiving communications system (PACS) for instant transfer of results to Sharp facilities and affiliated physicians

Gynecologic Oncology
This program, a component of the Cancer Center at Sharp Memorial Outpatient Pavilion, is led by nationally recognized, board-certified gynecologic oncologists. The program offers a full spectrum of services, including:

*
Cancer detection
*
Cancer diagnosis
*
Breast Cancer Center support and guidance
*
Radiation therapy
*
Chemotherapy
*
Surgery

Making the calls...

2007-11-12T12:51:00.000-08:00

So I called the California Dept of Health Services. (Every Woman Counts)
1-800-511-2300
M-F 8:30-5PM

And I reached an automated line. That said they were after hours. I called at 12:30PM PST. I was given the option to leave a call back number. So I left one. Let's see if they call me back.

Then I called the Center for Disease Control and Prevention.
1-800-511-2300
M-F 9-7PM

That was when I realized that it was the SAME telephone number. (Though they have different time of operation... Hmmm...)
I left another message and call back number. I was already on the line. This IS important. Let's see if they call back.

Then I called the third place on my list... Even though I already know that I am too young for their programs, I figured that maybe I might get lucky. And I did.

I reached an automated line that sent me to a real person. Maryanne. She was very helpful. She asked about the condition. And said that usually they refer younger women to Planned Parenthood. But since that was where I had started from, and Planned Parenthood does not do Mammography or Ultrasounds, we were at a different square one.

But Maryanne thinks outside of the box. (I liked Maryanne, can you tell?)She gave me the number to a local Komen Affiliate to call. (In San Francisco the number is: (415) 397-8812.) Maryanne said to ask the person answering the line about free of charge or low cost Mammograms and Ultrasounds. They should be able to direct me to a local facility or clinic that performs these tests.

If that did not work out, due to my age, then I should call the American Cancer Society next. The number is: (800) ACS-2345

She mentioned the YWCA. However they are fairly sticky about the age limitations. But I went ahead and pulled up the website anyway. The program is called ENCOREplus.

The main page is:
http://www.ywca.org/site/pp.asp?c=djISI6PIKpG&b=284783

And the page for Breast Cancer Screening is:
http://www.ywca.org/site/pp.asp?c=djISI6PIKpG&b=297532

The local Office for where I am currently at is:
YWCA Silicon Valley
375 S 3rd St., San Jose , CA 95112-3649
Phone: 408-295-4011 Fax: 408-295-0608

Where you go to find yours is here:
http://www.ywca.org/siteapps/custom/ywca/local.aspx?c=djISI6PIKpG&b=281414

The last place that Maryanne suggested that I try contacting was the FDA. (As in the Food and Drug Administration) They have a list of certified Mammography clinics that the Komen Foundation uses to refer women to. The number for the FDA that the Komen Foundation uses is: (800)363-2068.

And that is sadly all I have today. But I am pushing onward. More calls. And hopefully more directions to look into. (And Maryanne said that she would call me back if she was able to find out anything more that might be useful. For some reason, I actually do believe her. She was wonderful!)

My list to Call:

2007-11-09T16:52:00.000-08:00

Here is the list of place I have set to call on Monday:

California Department of Health Services
Breast Cancer; Cancer Detection Programs: Every Woman Counts
See if you qualify for free breast cancer screening, call 1‑800‑511‑2300
Monday - Friday from 8:30 AM to 5 PM.

Centers for Disease Control and Prevention;
California
To find out if you qualify for a free or low-cost mammogram and Pap test and where to get screened, call:
Information Line
1 (800) 511-2300 (in state)
M-F, 9am - 7pm.
In English, Spanish, Cantonese, Mandarin, Korean and Vietnamese.

Susan G. Komen Foundation
For information: 1-877 GO KOMEN (1-877-465-6636)

Where to start?

2007-11-09T15:34:00.000-08:00

Another question without a really good answer. I mean, besides the obvious, yourself... (You know, the whole Breast-Self-Exam... And then the Doctor...)

For me, I notice the changes in my body right away. I am not a hypochondriac or anything. I am just aware of my body and when it is different than it normally is. I may not know what "normal" is, but I certainly have a strong grasp on what is "normal" for me.

I noticed the lumps right off. And since I am on Medicare, and I was 33 at the time, that meant I was off to Planned Parenthood. I made the appointment, kept the appointment, and saw a Nurse Practitioner. Who had me come back to see a Doctor. Who was very unhappy with what she found. Giant lumps riddling both my breasts. She decided to place me on a Vitamin Therapy and restrictive diet for six weeks. I came back and she extended that time for six more weeks.

After a total of three months, I had had some improvement, but there was one lump in my right breast that still really worried her. she wrote out a script for a Mammogram and an Ultrasound to go with her referral to the Susan G. Komen Foundation. I was advised that the costs "might" be covered, but that I needed to find a way to pay for it no matter what.

I took my papers and looked up the Susan G. Komen Foundation on-line. I need to find a center near to me to call. And there on the site it said that financial assistance was available to those women over the age of 35. But I was 33. And I am on SSDI (Social Security Disability Insurance). Which means there is NO, and I mean NO money left over for something as frivolous as a Mammogram and Ultrasound. Where on earth was I going to come up with that kind of money? (It took me two years to pay off a pair of life-saving emergency surgeries. You know the unimportant sort of things that Medicare does not cover most of...)

But there on the site was a link to another site. This one said that they offered financial assistance to those that qualified. One of the qualifications was that the WOMAN be at least 34 years of age. Fine. At least I am a woman, I thought. But that would mean waiting another 3 months before getting testing on the lump(s).

I hunted around on the internet some more. Each time coming up to a brick wall. (aka MY AGE) Each and every place I found required that the patient be at least 35, and more often, 40 years of age. (Seriously? Do they really think that Cancer waits to hit until after your 35th birthday? Do they not know that cancer can come at any time and that everyone is at risk? Does it really take a HUGE statistic to make one person's need greater or more important than another's? Or do they just think that everyone under the age of 35 or 40 can afford to pay for costly tests and treatments?)

So after hitting my head against that wall about a gazillion times, I did what I do best. I decided to put my head in the sand. I was going to be an ostrich. What was 3 more months. I would just stay on the vitamins and diet and wait it out. I mean, if it was that important, the Doctor would have sent me in for tests right away, right?

That worked well enough for a while. That "while" being until I received a letter from Planned Parenthood stating that they had been trying to reach me and that it was urgent. Urgent??? Oh boy... (And since I travel so much, it took almost a month for the letter to even reach me...)

So I called Planned Parenthood. And they pulled my file. And had me wait... Wait as they called the Doctor on her cell phone while she was on vacation. (Vacation? What Doctor leaves a note in a patient's file to be called while on vacation?)After the receptionist relayed both sides of the conversation, the call ended. The end result? The Doctor was highly concerned that she did not have the results of the tests yet. And then she was highly concerned that I had not yet had the tests. And all I could say at that point was that I had waited this long already, I could not afford to pay for tests out of pocket, and I would take the tests in 4-5 weeks when I turned 34 and became eligible for assistance from the site I had found on-line.

At one time, I was so organized. But that is not the case these days. And sadly, it has not been the case for some time. I THOUGHT I had put the script in a safe place. But I could not find it anywhere. And to make matters worse, I moved. Packed up everything in a haste and moved to a new home. I am still trying to sort things out. And still no script for the tests.

I drove 2 hours to the Planned Parenthood that had my physical file, about 10 days before my 34th birthday. It was almost empty, but they were booked for appointments. I spoke to the receptionist, who pulled my file and did not see a copy of the script. Then she was told that they did not keep a copy of the script requesting tests, they only made an entry into the file that a script was made and given to the patient. (Which I promptly lost...) I waited a total of 4 hours and then I could not wait any longer, I had to leave. Without seeing anyone who could re-write the script.

My Birthday came and went on the 5th. I let it slide by. On the 6th, I went to look up the website that had the information about the financial assistance for women over the age of 34 with special funding needs. I could not find the site anywhere. (I had been having computer trouble and being the non-computer geek that I am, I gave it to someone to fix. I THOUGHT I had saved everything over to another drive while my computer was being cleaned out. It never crossed my mind that I would loose all of the bookmarks for the internet. I mean, that is where they are stored, right? Wrong. They CAN be. But mine were not.

So I am starting from scratch. All those weeks and weeks of research and dead ends. All that head banging... For nothing. But after four days of feeling the pressure, I know I don't have the luxury of time and pride anymore. I can no longer be a lemming and just follow along with the wait and see game. I can no longer be an ostrich with my head buried in the sand. It is getting hard to breathe under all that weight, and sand is unstable. It shifts. If I am going to be an animal, then let me be the lion... But not all of us are born that way. (At least I wasn't...)

So I gave up my privacy and shook away my pride and I asked for help. I posted up in several places asking for information about funding for those of us that are too young for the well-known foundations, centers and groups. And I started this Blog.

I have a list of places to call on Monday to get information. And to make sure that you know everything I know, I will be posting up that information as well.

For now, you know everything that I do. Which is not much.

This was easier the last time I went through all of this. I was 17, I was covered by a HMO; Kaiser, and my Mother was the lion making sure that I got everything that I needed... (Your head is shaking again... You mean I have been through all this before? And I still managed to bury my head in the sand? Please don't loose faith in me just yet. It is not as bad as it seems. Or maybe it is... I don't know.)

When you live with the threat of something for so long, you grow complacent. When you get used to waiting for when, instead of if, you get used to waiting. I was already following almost every lifestyle choice advised that was thought to help prevent cancer. I had fallen off of the "No Caffeine" wagon, but have been good about everything else... Tons of soy and lycopenes and Vitamins, never smoking, rarely drinking, and so on... I just finally reached the point where I thought, where I still think, if I am being truly honest, that I am NOT going to have cancer.

But the only way to be sure is to get that Mammogram and Ultrasound. And I will. If for no other reason than I want to put this all behind me and move forward with my life. I will face it if I have it, and then move forward. Or I will woman-up and take responsibility of my health and then move forward.

If there is anything that I know, it's how to survive. If there is anything in the world I want, I want to live. Really live. I hope you'll join me.

Under 35 and in need of financial assistance?

2007-11-09T14:53:00.000-08:00

Me too...

Not very reassuring, I know. But the one thing that I told myself, is that here, on this Blog, even if nowhere else, I will be brutally honest. I don't have the answer to that question that has been looming over my head for months now...

Wait...

I can hear the screeching of the wheels of your minds from here... It has been months? Am I nuts? This is important right? I could die right? And the wonder grows... I'll post up my story as it has unfolded later... Right now, what is important is finding out the answer to that illusive question:

Where does a person go to get funding/financial aide/assistance to cover the costs of a Mammogram, Ultrasound, or other necessary tests?

Sadly, I don't have the answer to that question... YET. But I will.

This is what I am going to do: I am going to use myself as a case study. Lay everything pertaining to my experiences and exposures regarding Breast Cancer out in the open. It is my hope that somehow, even if in some small way, I might help make the journey a little less harrowing for others.

And hopefully, it will also bring me the strength to pull my buried head out of the sand and start taking charge of this in a manner of which I would be proud of. And let me admit here, I cannot say that right now. Lions are proud... Lemmings and sheep are not.

This Blog... This Blog is the sound of my roar... Let's just see how far I can make the sound travel...