Oh, Claire, I was so happy to see your post. I have thought about you every single day. My surgery was August 30, and I am still in a terrific amount of pain, but things seem to be just a teeny bit better each day. Thanks so much for posting.
What a surprise to see you are home. How wonderful. You did so well. I have been watching the board to see how you were doing. Just take it one day at a time and it will all be fine.
I had a meeting with my surgeon today to discuss my surgery and he even said the procedure you had is much easier to take care of when you first come home compared to the pouch so I am still trying to make my decision.
My very best wishes and prayers to you and your family.
I have tried to send PMs to say thanks for support I am home but it keeps coming up with an error message.
So to all that sent messages of support Thank you.
I came home this afternoon and its lovely.I am still really sore and a bit spaced out but its lovely to be back. The urostomy is really easy to look after and in some ways I am glad thats the procedure that was done but I do feel that it makes me look odd and am worried about body image.
It looks like I am going to have to have chemotherapy so will probably be pestering with questions about hthat soon.
Thank you once again
I know of more people with the same diagnosis who didn't get chemo and are fine. But there are also those out there who had recurs-even with a lesser stage dx, and had have regrets that they were not offered chemo until things had come back and spread. You just never know in this game and that's the hard part.
Although there are studies being conducted on this approach of post-op chemo, there haven't been enough trials done to compare survival with/without chemo. Some feel it's better to be safe than sorry.
In any case this is a situation that has no hard fast answers, yet. Has your wife been offered the option of joining a clinical trial? That way her experience would also contribute to finding out the best approach.
Whatever happens we all want nothing but the best for your wife.
I also had T3a and clean lymphnodes and no metastasis. Not sure why they want to give her chemo, but it could be a precaution, just like they do with some other cancertypes when they have reached a certain level. Things should look better for her now, since they probably have checked out the other organs that could be affected. I googled on internet and found several descriptions on chemo as precaution along with cystectomi. Ask the doctor and they will tell you.
And remembering my own cystectomi, you should really know how much it means that you as her husband are in it with her all the way. My wife did the same thing. Please say hello to Clair from me, and as you can see, many here on Blcwebcafe are thinking about Clair, you and the rest of your family.
Diagnozed first time April 1th 2004.
Muscle invasive, T3A.
Radical Cystectomy June 29th 2004.
Illeal conduit. Bag on my stommack.
I have had chemotherapy without cystectomy. For transitional cell carcinoma, usually, the recommended chemo is cisplatin + gemzar, if it is intravenous. Basically, platinum salts work for killing these cells. I was also treated after surgery for flushing out any microscopic cells present. The main side effects of cisplatin is nausea and it is also toxic to kidneys. So, the docs should hydrate her before administering that drug. Hydration is very important.Gemzar is not that toxic. Some people have hair loss too with cisplatin. Since the docs are trying to treat only microscopic cells, they might recommend 3-4 cycles of chemo. In my case, since I already had a kidney transplant , I was given 2 cycles of cisplatin + gemzar and 2 cycles of carboplatin+ gemzar. Carboplatin is less toxic to kidneys than cisplatin. You will find more details about the various chemos at blcwebcafe.org/chemosused.asp . Hope this helps.
Btw, have you had a second pathology opinion.
Kidney Transplant 1998
Upper Tract TCC, Dec 2004
Native kidney Right Nephroureterctomy Dec 2004
Non invasive bladder cancer,High Grade, Ta,TURB Jan 2012
Native kidney Left Nephroureterectomy Feb 2012