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Nov 26, 2018 · Uterine Papillary serous carcinoma in Gynecologic Cancers

I wrote a really long reply but I don't see it here… it seemed to be here last night..?

Nov 25, 2018 · Uterine Papillary serous carcinoma in Gynecologic Cancers

Hi again. First I just want to say that UPSC, as you obviously know, is serious enough that I am every single day grateful to be dealing with side effects instead of dealing with it! Also I know it's highly individualized and I already had IBS before any of my treatment began, so I'm clearly digestive-sensitive to start with. What happened to me after treatment may be because of that. After all the external rad I'm just far more prone to diarrhea and cramps and have to manage my diet differently. It was getting severe for a while and I had to make changes —-I eat closer to a vegetarian/ vegan diet now, which is okay with me since I do animal advocacy anyway— for instance I do better with non dairy ice cream and milk and cheese than with dairy products. So it has been a trial and error process. My gastroenterologist was a big help in recommending a modified FODMAP diet. (Again, easy to look up, until I can post links.)

Nov 25, 2018 · Uterine Papillary serous carcinoma in Gynecologic Cancers

Thank you for adding the link!

Nov 24, 2018 · Uterine Papillary serous carcinoma in Gynecologic Cancers

Hi @goldengirl2 and others, Chiming in with my experience. I'm five years and a few months out from dx of UPSC. Had surgery w/ Da Vinci robot and a superb, skilled, kind surgeon here in Virginia, followed by a 'sandwich regime': three rounds chemo Taxol/ Carboplatin, 25 sessions of external radiation and 3 sessions of brachytherapy internal rad, 3 final sessions of chemo. At one point in 2013 it was suggested by a consulting oncologist that external radiation might not be necessary in addition to all the rest, but my surgeon recommended I hit it with everything and so I did. I'm completely NED and we celebrated the five-year mark this spring (my family). Some of the side effects I think are by this time considered permanent: neuropathy (chemo-induced in feet) and digestive changes (rad-induced). It was a pretty scary experience certainly, my tumor was 90% through uterine wall but no lymph node involvement. The standard of care changes a bit over time and I try to keep up somewhat with the literature (am too new here to post links, it's not allowed for me, but there are some good recent ones found easily on google by inputting UPSC and looking in the last year) but by no means qualified to weigh in medically. Just a survivor's experience. Best of luck to you. If I can answer any questions please just ask.