Aug 17, 2009 - 8:55 pm
Big post-treatment check-up day for me, with my 1st apppointment with the newly-hired head of Women's Health, and their new Gyn-Onc. He has my head spinning with new information, as he has decades of experience working with UPSC. I could hardly wait to get back and post to run all this by you and get your feedback.
First of all, this gyn-onc is a FIRM believer in tissue assays prior to chemo, and says he will establish that as standard practice for UPSC patients at Geisinger Medical. (YEH!) He said the tissue samples from my surgery are no longer frozen, but would at this late date be in parafin, but that possibly the 'block' could still be used for genetic analysis (no promises.) He said that even if I was HER 2/neu positive that he would never give me Herceptin while I was in remission.
This gyn-onc seemed surprised that I'd had pelvic radiation, and said that CHEMO (carbo/taxol) and lots of it, is what is now the accepted Best Practice for UPSC, with brachy as the only radiation he probably would have recommended for me (WHAT??), at my Stage III-c. This is because the cancer found in my body was 100% UPSC, with no mixed cell types. He said that since my cancer was only microscopic in a single lymph node, that MY Stage III-c was at the very best end of the III-c spectrum with cure/5-year survival rates in the high 70's percentile.
The other mind-blower that I need feedback on, is that he gave me a prescription for HORMONE cream to use 3 times a week with my dilator. I told him that I thought hormones were a No-No for uterine cancer. He said "not if your cancer is 100% UPSC with no other types off cancer cells mixed in." He said that UPSC does not develop from endometrial hyperplasia and is not hormone-sensitive, rather it arises from an atrophic endometrium. UPSC belongs to the type II endometrial cancers and that use of hormones would not feed UPSC cells and would improve normal sexual function. What do you think? I know that if I had mixed types of cancer cells that hormone cream would be bad, but could he be right that hormone cream may be a good option for me since I am 100% UPSC?
My new Gyn-onc's other comments on dilators: He believes all women who have had pelvic or brachy radiation should use a dilator DAILY, and to plan on having sex every single day for the rest of your life is probably unrealistic, and he thinks dilation is a necessary DAILY exercise. He said he wants me to use the hormone cream on the dilator 3 days a week, and use the dilator every day.
I had to get totally nude and was checked under the arms, breast exam like you would give younself, digital rectal/vaginal check, legs checked for any nodes and swelling. He said I needed to wait 3 full months after radiation before having a reliable PAP test and made an appointment for me in November. We talked about PET-scans, but he said something would have to show up on a CT-scan before he would order a PET-scan, and that he would be reluctant to do it because of the high incidence of false-positives.
I had bloodwork and my RBC and WBC and platelets were borderline normal but still pronounced WONDERFUL for this soon after radiation. I had a CA-125 drawn, but won't get the results until tomorrow. The onc said if it goes up, it will be from the recent radiation and he will disregard it, so I'm not to stress. (My March 26th CA-125 was 11, for reference). I'll let you know what it is once I get it.
Whew! So much new information!!