I have shared in the past that I am a breast cancer survivor. Now I will share that I do not survive breast cancer, I live with metastatic breast cancer. You see, my cancer has gone beyond the breast and now exists in many parts of my body. Having spread to a major organ makes a cancer a metastasis. My breast cancer has spread to my lungs, chest wall lymph nodes, bones in my pelvis and right arm bones. For the past two years I've been treated for fibromyalgia. This was a misdiagnosis. But I won't go into the high rate of misdiagnosis in breast cancer and mets breast cancer. Instead, I will share this. The pink ribbon notorious for breast cancer awareness is no friend to women and the few men who have mets breast cancer. Less than 1 % of money raised for research goes towards studying or finding treatments or cures for metastatic breast cancer. You may ask yourself this, If Susan G Komen began fundraising for a cure in 1998, why more than 13 years later are we no closer to a cure?
This year in March, I discovered that the persistent cough I had suffered for months was caused by fluid in my lungs. On biopsy this fluid was found to be metastatic breast cancer. Further test by PET scan showed the cancer to be in my arm, pelvic area, and chest wall. As of now I have had 4 procedures to drain my lungs. Which is insert a needle into your lung to drain the fluid so that you can breathe. Since diagnosis I have received 5 chemo therapy treatments. My lungs no longer are filling with fluid, I can breathe, and I have energy. The drugs that are used to treat me are Taxol and Avastin. You may have heard of Avastin in the news recently. It has been decided by the FDA that Avastin isn't a drug that benefits patients with mets breast cancer. The original studies found the drug to extend the life expectancy by 5-6 months. The FDA disputes that claim stating that the study really reveals a life expectancy of 1-2 months. I ask you, if you could have 1-2 extra months of life would you take it? I know I would. The side effects of this drug are high blood pressure, nose bleeds, and possible intestinal problems. There are a few a law suits pending due to some of the side effects. This drug will continue to be used to treat liver, intestinal and brain cancer. The same side affects still apply.
Having just learned that the FDA has removed this drug as a treatment for my cancer is frustrating. They say that Doctors may still prescribe the generic form for mets breast cancer treatment. But in fact insurance companies will no longer pay for this. That would mean an average of $100,000 out of pocket from the patient. I am not independently wealthy. This paying out of pocket would not be an option for me. There are no drugs that I am aware of waiting in the wings with as much promise as Avastin has at treating this disease. So far I have completely stopped all tumor growth. My lungs have cleared, and my energy has increased. My quality of life has gone from being sick and weak to being active and energetic. The FDA's decision has left me sad and worried. This is not a place that is healthy for someone who has a shortened life expectancy to be in.
Let me leave you with this, if you have any lumps, bumps or swelling, do not let a Dr tell you it is probably nothing. I had a radiologist tell me this. I asked him, If he had a lump or swelling on his testicle, would he just ignore it because someone told him it was probably nothing. He said he would get it checked out. Of course he would. It is different when the problem is yours and not someone else. So, if you have a lump, pursue getting it checked out. Even go as far as demanding a needle biopsy. It could save your life! If not for the insistence on pre-surgical testing for my recently cancelled breast reconstruction by my cosmetic surgeon, I would still think I had fibromyalgia and would not be receiving medical intervention. Get mammograms, and insist on follow up on anything you find that is suspicious.