share: TCC, radiation-caused, inoperable, awaiting chemo, but considered terminal
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.
QUESTIONS:
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.
~~Katz
All user-generated information on this site is the opinion of its author only and is not a substitute for medical advice or treatment for any medical conditions. Members and guests are responsible for their own posts and the potential consequences of those posts detailed in our Terms of Service.
Add a Comment3 Comments
Katz, what a remarkable, adventure-filled, high-and-low journey you have been on. I salute your determination and clear thinking and I am in AWE of your sense of humor. (Stan and Stella! I love it! Williams would indeed appreciate it.)
I will do some research for you and I would like to submit your question to one of our panel of experts, hopefully in enough time to get an answer back before your doctor's appointment. What day is your appointment?
And so that I am clear, what they have termed inoperable, terminal and high grade is the bladder cancer, even though it is not anywhere at present? Is that right?
This will be the first time you've had chemo of any kind, is that correct?
And right now, other than the impending chemo and the ongoing adventures of Stan and Stella, you actually have no cancer showing and nothing else in pain or malfunctioning, is that right? But the "terminal" diagnosis was given after the most recent surgery? THat removed the cancer in the vagina? Or was it given before that?
Was the doctor who gave you the "terminal" diagnosis your bladder cancer doctor that you think is great?
And while it's not part of your primary question, why is there a zero chance of getting a second artificial hip?
I'll work on getting some good information for you if you'll write back and let me know if I've interpreted it all correctly?
Hang in there, Katz. This is what our founder created EmpowHer for. We're all on your side.
May 22, 2009 - 5:53amThis Comment
Katz - Diane is right -- you have found support here. And I'm thrilled you want to present your doctor with a list of questions so you can better manage expectations.
We submitted your question to a Phoenix-based oncologist by the name of Dr. Mike Janicek. And while he mentioned that your case was extremely complex and it may be unlikely to get definite answers to difficult questions, here's what he had to say:
"As a general perspective, however, Kat should get a clarification regarding what is incurable vs. terminal. Many cancers are incurable, but patients can enjoy a reasonable quality of life with chemo- to keep the cancer "at bay" for some time. Terminal implies death is imminent from active disease in weeks to a few months at most... We rarely ever give chemo to terminal patients, and it does not sound at all like Kat should be categorized as "terminal."
I hope this at least helps a bit... Kat is a brave warrior in her long, brutal battle against cancer!"
MJ
To learn more about Dr. Janicek and his practice, visit this link.
May 22, 2009 - 9:31amDear Kat,
Thank you so much for visiting the website and for sharing your story with us. I also love your sense of humor and the way you write. I have a dear friend whose Grandma had a colostomy, and she once told me that her Grandma named it "Junior" and she threw a birthday party for him every year. So Stan has a friend out there!
I'm also interested to know which cancer is considered to be terminal and how you got the grade that you did. I'm not certain how you can have cancer if the cancerous part has been removed. If you can clarify that part of your story to us that would help us help you out even more. I've been in touch with Tina, who posted to you above, and we're going to make sure one of our experts gets back to us with some more information.
Like the others have said, it's great that you are empowhering yourself and that you want to go to your appointment prepared and with a list of questions. The questions that you are posing to us are a great place to start--I hope we can help answer them too but you should still ask them to your doctor as well.
Please get back to us when you can with the additional information and hopefully by then we will have heard back from our expert. Big hugs to you Kat, and thank you again so much for finding us. Michelle
May 22, 2009 - 10:26pm