new diagnosis

16 years 8 months ago #7191 by wendy
Replied by wendy on topic new diagnosis
There's a considerable amount of controversy about how best to treat a T1G3 diagnosis, with BCG being a rather successful alternative= but only if it works. Recent evidence showing that those who progress on BCG have a worse prognosis than those who present with T2 tumors are causing surgeons to re-think things; I have noticed articles appearing suggesting that T1G3 tumors be offered immediate cystectomy in order to get the best long term prognosis. The data all says that the earlier cystectomy is performed, the better the long term survival. There is a graph on this page with survival by stage: blcwebcafe.org/cystectomy.asp

You can read up on the controversy of pre-op chemo, as well. The benefit is said to be appr. 5% improvement on the long term. blcwebcafe.org/chemocontroversy.asp

Systemic chemo for a T1 tumor is not a common recommendation. Questions that come to my mind are: Are you sure the dx was T1, might they be worried about understaging;was the tumor very large? Is the idea that the pre-op chemo is a bladder=sparing treatment or are they planning cystectomy after chemo? Sloan can be rather aggressive when it comes to chemo, but also very successful, as I've seen.

All the best to you and your father.
wendy

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16 years 8 months ago #7190 by zembla3
Replied by zembla3 on topic new diagnosis
Thanks for your response, Cynthia. It's reassuring to get perspective from someone who's been "in the trenches."

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16 years 8 months ago #7173 by Cynthia
Replied by Cynthia on topic new diagnosis
Like all of us when first diagnosed you have more questions than answers. You will know much more once you talk to the doctor on Friday. A lot will depend on if there is a re grading or if it will stay the same T1 Gr 3 pathology. I think one thing that is universal with anyone with a new cancer diagnosis is we desperately want absolutes. We want to hear that if I do x that it will take care of the problem. What we hear instead is if you do x it should take care of the problem.
A T1 high grade diagnosis comes with differing paths of therapy depending on the wishes of the patient and the doctor’s opinion. Many will decide to go with tumor removal and one of the treatments that are given directly into the bladder. Using a catheter inserted threw the urethra; they drip in an agent that ideally will cause an immune response in the bladder lining. This is done on a schedule and often yearly maintenance if there is no recurrence. BCG is the most common one that they use but there are other agents. Most of these agents while they can cause side effects such as irritation of the bladder and frequency of urination will not cause the side effects commonly associated with systemic chemotherapy. While in the minority from my knowledge an other might say no I want rid of this and I feel the surest way to do this is Radical Cystectomy.
As for can it comes back after Radical Cystectomy the answer is yes, cancer can be unpredictable. But the survival rate following radical Cystectomy is very high. Can it come back following treatment with BCG or a like agent while trying to preserve the bladder, yes it can bladder cancer has one of the highest rates of recurrence of any cancer. The goal of the BCG treatment is to preserve the native bladder, cut down on or eliminate recurrences and to try to keep any recurrences to a lower grade if they happen. Either course of treatment will mean that your father will frequently be checked for the rest of his life to catch problems as quickly as possible. There are people I know that have chosen either path and are doing well years later.
I hope this helps a bit but know that you are going to a very good place for treatment. Sloane Kettering is well respected in the blc world. Make sure that you keep up the good work as your father advocate and that someone is always with him to take notes at all his meeting with his doctor while this is all new.
Good luck and let us know what you find out Friday.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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16 years 8 months ago #7171 by zembla3
new diagnosis was created by zembla3
Hi all,
I'm new to the forum. My dad (who is 64) was recently diagnosed with T1, G3 bladder cancer, despite never having smoked or worked with chemicals. He had a TUR to remove the tumor a little over a month ago and another TUR 2 weeks ago to check for cancer in the prostate. We have a meeting with the doctor on Fri. to discuss the results of the second TUR and recommended treatment options, and I wanted to get a sense of what to expect. The doctor (at Sloan-Kettering) has said he is leaning toward 4 months of chemo. For those of you who have had experience with G3 tumors, what has been your (or your relatives') course of treatment? If you had chemo, which chemo regime was it? Did you ultimately undergo a cystectomy or cystoprostatectomy? Can there still be a recurrence of cancer even after a cystectomy or cystoprostatectomy? There's still a lot I don't know about this stuff! Thanks in advance.

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