Hi all. My name's Kat. I'm a 26 year survivor of HPV-caused cervical cancer. (Just one more thing to blame on my ex-husband..) I had a cesium implant, a hysterectomy *ovaries left in, followed by "outdoor" radiation because 1 lymph node was positive for cancer. I was 26 years old at the time, so half of my life has been spent as a cancer survivor.
NOW, the damage from the radiation (in particular the intra-cavity implant), has cost me a hip (have artificial now, it's 12 years old, and loosening, and there is ZERO chance of getting a secondary prosthetic hip. YAY!!). Then the intestinal issues began: 9" upper bowel resection (was initially mis-diagnosed as having Crohn's), leaving me with "Short Bowel Syndrome". Then, a few years later, fistula developed. First, between bowel and bladder, in which my bowel was "sucking up" urine from my bladder, and expelling, causing massive diarrhea which quickly became deadly. Was not diagnosed correctly until I weighed 60 pounds, and got a colostomy (Stan), which saved my life.
Six months later, I began urinating vaginally (sigh. A vesico-vaginal fistula) and spent six months trying an Indiana pouch, which fistulized almost immediately. Proceeded to a nephrostomy for 4 months, to see if the Indiana Pouch would heal. Nope. So I got a 2nd ostomy, an ileal conduit, Stella. Stan is now 5 years old, and Stella 4. (Together, they are the Kowalskis, from Streetcar Named Desire. Somehow, I just think Tennessee Williams would LOVE it.)
For the most part, I did very well in the last few years. Then it started: hospitalized for kidney stones, e-coli in kidney. One still left at large -- it won't show up on x-ray to target -- causing alot of bleeding. So I checked with my surgeon who did the ileal conduit. He put me out, found.....BLADDER CANCER, odd because my bladder had been gone for 4 years. EXCEPT for the tiny piece that had attached itself to my vagina, causing the fistula. So that was removed, via outpatient surgery. Healed fine. Few months later, it showed up in the urethra, which was removed via outpatient, unique surgery performed by my urologist. Then, it was in the vagina, also removed and gotten down to clear margins. These are not tumors....more granulated, dying tissue(s).
I am considered a Stage III, high grade, inoperable (Hostile abdomen....seriously! That's a diagnosis!). But my PET scan shows it NOWHERE else.
Why would I be considered terminal? (Which I am....though it's not showing UP anywhere, for right now.) Is it INEVITABLE that it will recur?
I am scheduled to take chemo very soon. (Cystplatin & Gemzar, 12 weeks) If indeed I am "terminal".....what's the point of chemo? To EXTEND life? I was told the odds of it working are 50/50......"working" in what regard??
What are the 5-year survival rates, given the nature of my cancer?
I hope I've given enough info to get some detailed info. I'm frightened, yes, but confused, also. I have an appt. with my bladder cx doc next week, and would like to present him with a list of intelligent, informed questions. (He's the greatest.)
Thank you for your time.....and your help, if able.
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