Tuesday, March 7, 2000

Ann's Thoughts for Cancerlynx.com

Random Thoughts of a breast cancer activist:

I started wondering about things just a few weeks after my first surgery, a lumpectomy in 1993.

I wondered why the brachial nerve was cut in my arm, causing a numb area that never really fully recovered. Did you think this was a necessary part of surgery? Susan Love, MD, told me years ago it did not have to be cut. My own (first) surgeon told me he cut it because it might have developed scar tissue and then would need to be cut - he pre-empted that!

I wondered why he took 18 lymph nodes from my underarm without even mentioning this surgery to me. I KNEW I did not want to do chemotherapy but he took away my options. I thought in 1993 that it was really nutty to destroy part of the immune system so casually. Now in 2000 we have the option to try sentinel node biopsy. Tell other women about this. The vast majority of us do NOT have involved nodes( up to 60%). We should continue to search for other ways to determine staging.

I wonder why the doctor told me that lumpectomy with radiation was THE best way to go. I later found the study done by the government-sponsored NSABP (National Surgical Adjuvant Breast and Bowel Project) B-06. This study was done to determine if lumpectomy was as good a surgery as mastectomy. They just happened to create three arms-mastectomy, lumpectomy with radiation and lumpectomy alone. Well, the survival proved to be the same-IN ALL THREE ARMS. But my doctor did not tell me about this - did yours?

I started to wonder why the FDA (Food and Drug Administration) was approving drugs that did not impact on survival. They look for tumor response because it is measurable. Good for scientists and pharmaceutical companies, but not so good for us patients. They say at their meetings that "survival is the gold standard" but somehow that is not what is used to judge a drug's merits. The sad news is that tumor response usually DOES NOT CORRELATE WITH IMPROVED SURVIVAL.

I just keep on wondering. I ask questions. I listen for meaningful answers. I do believe they will come, but only if we ask meaningful questions. Back in the 1960's when many of us were teenagers or in our 20's, there was a slogan that said Question Authority. I keep thinking about that. I hope you will too.

Ann Fonfa, Not a born cynic but very uncomfortable with business as usual

Posted March 27,2000