Bob, I understand your point on this post too well. The other cancer I have dealt with 3 times in my life is so ultra rare, that it doesn't even show up in most cancer groups or sites. In fact, the American Cancer Society doesn't even list it. An ultra rare disease is usually defined as having less then 10,000 cases world wide. I have had porocarcinoma the three times. The first time in my scalp, they removed it. In less then a year, it came back with a vengenge, huge, ugly, bleeding all the time. This time, involved major plastic surgery to the scalp, long ugly story there (still have an ugly red triangular sunken scar on the top of my head). Two years later, while about
to shave my neck, was scratching it, felt a weird rectangular lump right below the skin. Two surgeries to remove it. Came back with the same porocarcinoma in my lymph nodes. Two more operations to remove lumps in my thigh and groin, to be safe. Then I began the 35 days of radiation treatments, covered me from about
my nipples to my nostrils. Was rough as hell, side effects were terrible, to this day, have constant thirst, can't really spit anymore, still suffer chronic fatigue, and that ended 9 years ago!
At that time, I was one of only 38 known cases in American medical history with such a cancer, and in the whole world, less than 300 known cases. My dr. had one other patient, a female, little older than me, she has since died of it. With 2 patients, my oncologist was considered the "expert".
Yes, there are weird little cancer variants that the pros just don't know a thing about
David in SC
56, 56 at DX, PSA
7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes
First PSA Post Surgery 2/9 .05, 6 month on 5/9