May 31, 2009 - 4:59 am
Has anyone experienced this type of cancer? What kind of treatment have you had? One radiation oncologist recommended 6 1/2 weeks of radiation to both groins, the vulva and anus and chemo weeks one and five (treating as anal cancer although all tests are negative); a well-known clinic said to do that or just "observe". Two very opposing plans. So I went to another radiation oncologist on Friday - he suggested treatment but more conservative than the first doctor and said that, with CT scan guidance, side effects could be minimized. The first doctor had said I would have lymphedema to both legs forever, anal concerns, vaginal stenosis and would probably fracture my right hip. Right now I feel quite well, just a little tired at times. I had surgery to 'de-bulk' the right groin on April 8. I got a lot of information from the American Cancer Society (they phoned!) and from NCCN. The prognosis is very poor although "improved" when it has only been found in the lymph in one groin. I did have a PET scan which only showed the one area of cancer but have read that it is only accurate for cancers 8mm or bigger. So the primary cancer could still be lurking around somewhere. Because I went for another opinion, I now have to get back in the system to start radiation in my own city. However, I don't regret following my gut and going for another opinion instead of going with the first doctor's advice. Hurry up and wait....This cancer is rare but if you have any experience with it, I would appreciate hearing from you.