I'm a Breast Cancer Activist, by Ann Fonfa
I became an activist two weeks after my initial surgery for Stage One invasive lobular carcinoma of the left breast. That was right after my doctor told me he had removed 18 negative lymph nodes.
Since he had not even mentioned that this surgery would be performed, I was understandably horrified. Three weeks later, I developed lymphedema. So my first actions involved letting women know the dangers of lymphedema and what was known about prevention and treatment.
I chose not to have neither chemotherapy nor radiation. I had read some scientific papers and found that survival was not the issue with radiation. It was a treatment to help prevent local recurrence.
Two years later cancer recurred. I decided to fight back using natural and nontoxic therapies since I had spent the intervening years investigating the area. Back in 1993, there was not much information easily available but I had managed to find out of print books and old studies. I had met with some practitioners and spoken to people who had been diagnosed with cancer years ago.
Tumors continued to develop after the second lumpectomy, I had a third one. Then I decided to get a mastectomy because much of my (formerly large) breast was gone AND doctors seemed to feel now that invasive lobular benefited from mastectomy since cancer cells were all through the breast but rarely visible with mammograms or sonograms. That was certainly the case for me. At this point I have had 24 tumors, all on the left side and only one was visible on a mammogram (and those findings indicated a possibly suspicious lump).
Just 4 months after the first mastectomy, I developed 4 very small tumors on the chest wall. At first my surgeon suggested they were 'nothing'. But I felt that was unlikely. She took them off in her office, quite casually. Pathology reported they were indeed malignant.
She was surprised but told me that all these 'recurrences' were really the original cancer slowly growing out.
In 1996 I developed Paget's Disease of the Nipple on my right breast. It looked like a rash but I showed it to an acupuncturist friend, then an oncologist, then my surgeon. This time I chose to have a mastectomy right away as I was told this was a clear sign that invasive lobular carcinoma had now gone into the second breast.
Happily, that was not true. It was ultimately diagnosed as Stage 0, non-invasive. I called it "my sacrifice to science". I would not have opted for that surgery if I had known going in.
I have continued my program of using natural 'alternative' therapies, even going to Mexico to learn the Gerson therapy. Happily this slow process of improving my immune system and generally strengthening my body has resulted in an absolute, recognizable benefit to my health. I still develop tiny tumors BUT there is NO sign of advancing disease. I am not metastatic but I do have an unusual presentation for an American.
Since I did not follow most of the recommendations made by the doctors, they tell me they just cannot tell how I am doing. That's okay because I can tell them I AM DOING JUST FINE.
I believe so strongly that using natural and non-toxic approaches are useful that I have argued this in Congress and before the Food & Drug Administration. I attend medical conferences trying to interest oncologists and other doctors in the idea of building the body's defenses naturally. In June of 1999 I established a website so that the thousands of cancer patients interested in alternative/complementary medicine can find useful information easily in one location.
Also in June, I found the discussion group called AMAZON. This enabled me to exchange emails with many other women who were using similar methods to my own. We offer each other support and information and it is wonderful. (Send an email email@example.com for information on this group)
The good news is that many cancer centers and local hospitals have begun to offer some complementary therapies. Science is finally recognizing that the immune system does have a large role to play in dealing with cancer and patients are making more informed choices.
As an activist, I know there is lots more to be done but things look quite a bit better than they did in 1993.
Written in 1999, Posted on BC Forum
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