Wednesday, March 23, 2011

Triple Negative Management: A Lifelong Committment

I am a triple negative breast cancer survivor. In September, it will be ten years since I first even heard that there was such a type of cancer. Back then, they simply called it "The bad one." Upon further investigation I found out that we have a "poor prognosis." I don't think so. And neither did my doctors. So we made a plan of attack for surviving triple negative breast cancer:

1. Hit it with everything we could as far as chemo and radiation

2. Change my diet drastically to reduce my fat intake to under 30 grams a day

3. Exercise

4. Flax seeds, whole grains, asparagus.

And most important?
SURVEILLANCE.

I alternated mammograms with breast MRIs every six months. I had scans to catch any tiny cell that might be thinking about dividing and taking up more real estate in my body. They watched me like a hawk. It is, by far, the most important thing a TN patient needs to do.

Early detection of distant metastasis is as important as early detection for primary cancer.

Thank God I had insurance that covered me for this. Why? Because if you are triple negative, unable to afford insurance and depend upon Medicaid or Medicare, once chemo is over, so is your coverage. What does that mean? After your treatments are completed, because you are triple negative and cannot benefit from any long term medication,  like hormone responsive cancer patients do, they declare you "done." That includes NO follow-up care with doctors,  NO surveillance,  NO scans and  NO CARE for the most aggressive type of breast cancer out there.

Kay M.  has been waging a one woman war in Indiana to get coverage. She has been denied. She has been told there is no more treatment so no more care. She has gone through the Indiana State government and all the way up to the White House. Every door has been closed on her. A second member of the No Surrender family from Indiana is also losing her coverage for her triple negative disease once her chemotherapy is ended.

Are you aware of the laws in your state? Are you on Medicare or Medicaid and Triple Negative and getting covered for follow-up care? Please let us know if you are. If you are like Kay, please help us change this "rule" banning coverage for Triple Negative patients post treatment.

WE NEED ACTION:  Coverage for Follow-Up Surveillance for Triple Negative Breast Cancer Patients  is the only way to protect these women. If you know of a way to help, please contact us.

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