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Newly diagnosed, high grade invasive options

4 years 6 months ago #48613 by donnam
Thank you Cynthia. You were most helpful. You describe what I am most afraid of to be quite honest. I have a friend undergoing treatments for breast cancer at Dana Farber and likes it very much. I though MGH as it appears to have a very good bladder cancer group. I think the BCG treatments originated by a doctor there. My urologist had hoped that was the route I could go, but that was not in the cards.

Bladder Sparing sounds good, but I am not sure how much of the muscle my tumor has invaded. I had melanoma 16 years ago and my instinct was to just "get it out."

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4 years 6 months ago #48612 by Cynthia
Don, Sorry you have to be here but welcome. I had my treatment at MGH and can highly recommend it. Even after ten years I see an Oncologist there Dr. Lee and his NP Erika Barrett they are both wonderful to work with. They are at the Bertucci Institute and handle a high volume of Bladder Cancer. The following link will also take you to the contact information for Dana-Farber and they are also highly thought of.

http://bladdercancersupport.org/bladder-cancer-help/resources/treatment-center-finder/search-results?order=rdate&dir=1&cat=200&query=all

Radiation is usually not used for T2 bladder cancer. Surgery after can be complicated due to the changes in tissue cased by the radiation. I was part of a clinical trial using radiation and chemo to try to preserve my bladder. It failed and I had to have my Radical Cystectomy in Chicago because I had to find a Urological Surgeon who specialized in reconstruction following pelvic radiation all that they would offer me at MGH was an Ilial Conduit because of the damage from the radiation.

To tell you the truth in hind sight I would have just had the Radical Cystectomy and not have tried the Bladder Sparing protocol. The complications in the years since my RC has all be associated with the radiation and not the cancer or the surgery itself.

I have a good life and I know it seems impossible now but life can be full and pretty normal once you get through this.

Remember we are here and please keep us updated.

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
The following user(s) said Thank You: donnam, BB62

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4 years 6 months ago #48610 by donnam
I am in Norwich, CT. I have seen only the urologist who has sent me to the oncologist in Norwich CT-works out of Backus Hospital. My urologist has said that he does not do many bladder diversions so I am thinking that I would go to Mass General-only about 1 1/2 hours for me. I hadn't thought about another opinion but in the two weeks wait for the oncologist, I decided last night (after visiting this site), that it is in order. I was planning to call directly on Monday,

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4 years 6 months ago #48609 by sara.anne
I am so sorry to hear of your diagnosis. You will find many people here who have faced what is ahead of you.

First, you ABSOLUTELY need to get a second opinion. Where are you being treated? What is your geographic location? Others here can suggest really good places (centers who see a LOT of bladder cancer and who do a LOT of cystectomies.)
In fact, my urologist had told me that should we ever fact cystectomy...so far I have been lucky...he would INSIST that I get a second opinion. This is too important for you not to seek as much really top information as you can.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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4 years 6 months ago #48607 by donnam
I learned on Feb. 19 that I was high grade T2a.. Second TURBT revealed tumor still in muscle so I have to visit the oncologist this Wed. The urologist is hoping for bladder preservation, but I am worried about the recurrence and complications that might ensue from radiation. Is it not a good thing to go with a cystectomy? I am thinking the Indiana Pouch might be a way to go followed by the chemo and radiation. Anyone out there with similar conditions or advice on what works well?

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