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Support Groups in Orlando, FL ????
After two years of resections (4 total) and two series of BCG treatments, firing my initial urologist and now having one that I am pleased with, I am at the juncture of a radical cystectomy. I am scheduled to have this operation at the VA Hospital in Tampa, FL. I am feeling quite desperate as I have no one to talk to inasmuch as the choice I must make regarding a neobladder or a Florida Pouch (that’s what they call it here, I guess they give it a tan while they’re in there.)
If anyone has information regarding support groups in my area, please respond. I have contacted the Nat’l Cancer Society and they have forwarded my email to a local hospital. I have made calls to the local hospital and no results as yet. It would help to have someone to speak with.
I appreciate having this forum available, thank you.
Carpenter-Vietnam Vet-Father of 4 boys8 Replies-
HI MC – my husband just finished 3 months of chemo – cisplatin/gemzar. if you want the details of the timing, etc., just reply and i will answer more fully. he has T-2, T-3 muscle invasive bladder cancer. the last chemo was yesterday, oct. 22nd. his RC is at hopkins on nov. 5th. the newest studies and the cutting edge treatments seems to agree that chemo first gives you about a 10% higher survival rate. the chemo sucked and we really hope the cancer is all gone because my husband would be really bummed out if he had to have chemo again after the surgery. good luck!
eileen, mike g’s wife
Michael
Age 58
Stage T2-T3, muscle invasive
Married to Eileen
2 sons, ages 20 and 23Hi Mc,
Glad you are getting it done :)
I was T3 grade 3 micropapillary at cystectomy N0M0- the cancer made it thru the bladder wall. So I did 4 months of cisplatin/gemzar after the neobladder. They removed 25 or 35 lymphnodes too – all negative for cancer. It started just 5 weeks after the RC but I am glad I did it – I do believe it has raised my survival rate from the bc.
Let me know if I can help, God Bless, Holly
PS about cystectomy, here is a link to an abstract from the researchers at USC; they have done a lot of work looking at extended lymph node removal, something that is not quite standardized. Surgeons can remove as little as 8 or as many as 70. This is something worth discussing with any surgeon you might see, ask their opinion on lymph nodes removal (do they continue the surgery or stop it if lymph node involvement is seen during surgery? and how many lymph nodes do they remove?)
Here’s a recently released paper from USC on the subject:
http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowAbstract&ArtikelNr=107949&Ausgabe=233776&ProduktNr=224282The experts from USC say that removing the positive nodes along with a whole bunch of others can increase survival.
Wendy
Hi,
Yes, tons of folks passing through here have had chemo after surgery, in fact some have had it before surgery as well. Radiation (external or brachytherapy) is much more popular in Europe and hardly used in the US aside from either a)bladder sparing protocols or b)palliation of symptoms for metastatic bladder cancer.
There is not yet a universally accepted chemo protocol, though a newer 2 drug combo (Gemzar and cisplatin) seems to be replacing the standard 4 drug combo of MVAC which is more toxic; some experts say do chemo before surgery and some say do it later, but most agree that chemo should be for those who have advanced, aggressive muscle invasive tumors. Until relatively recently chemo was held for those with advanced tumors (T4), but some experts these days are giving it pre-op for T2 tumors; this is all part of a wide effort to increase survival rates post-op which haven’t changed much in 30 years.
It is well known that high volume institutions that do many cystectomies have the best survival rates for this surgery. Experience really does count here. One of the top surgeons in the US and maybe the whole world-Herr from MSK-has written that a well done surgery is more important than chemo before or after…and he’s done a lot of research on it too.
I know many folks who had T3 tumors, no chemo and get long term survival. I know folks who had T4 tumors/lymph nodes involved, got chemo, then surgery and are cancer free many years later. Same with surgery followed by chemo.
So…if needed chemo has been shown to actually help; bladder tumors are considered chemo responsive, though that’s when it’s the “normal” cell type of bladder cancer-transitional cell carcinoma. Rare cell types are often treated differently but you shouldn’t worry about that as rare types are just that-rare.
Webcafe covers some of the ongoing controversy about pre or post-op chemo under ‘chemos used’ in the ‘invasive bladder cancer’ section on the main site.
Keep asking questions..
Wendy
:)Thank you for your words of encouragement. I truly appreciate your response and suggestions. I have acted on some more leads today (nothing yet). This forum certainly helps out. I can vent my apprehensions and fears to someone that I don’t know yet they know what I am going through. 31 October, that’s the magic date. I spoke to the VA hospital today and am going to Tampa on Wednesday for the pre-op stuff. ???By the way has anyone out there required chemo or radiation after the RC?
Carpenter-Vietnam Vet-Father of 4 boys
You could contact Moffitt in Tampa, as they have a big uro-oncology unit.
I know there are men here post-op who often make phone calls to newcomers and hopefully one of them will see this post and respond.
In the meantime feel free to ask, and browse the forum.
The main site also has a large section about cystectomy. The survival guides were written by patients. Also the FAQ’s.
Take care,
Wendy
MC – Welcome to the forum ! :) I am sorry to say that I am not able to help you with the questions you have asked ??? but hang in there…I’m sure someone on this forum will soon respond and try to point you in the right direction. We, who have had RC’s (and supporting family members), are here to help and encourage you in any way we can. When I initially realizd I needed an RC back in March, I felt completely alone until finding this site…it has been a real blessing for me and I hope it to be the same for you. Wishing you the best. Melodie
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. WrightSign In to reply.
