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
www.cancerlynx.com
