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42yrs, high grade, aggressive T2 - what are my odds?

8 months 1 week ago #55613 by mkivligh
Thanks. My husband is 6 years out from surgery and has not been instructed to irrigate beyond the first six months

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11 months 1 week ago #55052 by Catwith9lives
I had radical cystectomy, total hysterectomy and neobladder in 2002 after diagnosis of urachal adenocarcinoma. I am 16 years out and cancer free. Have had the usual mucous production, urinary tract infections and stones but otherwise have done well. Do straight Cath and irrigate still. The first few years are a little difficult. Hang in there! I was 41 at diagnosis.
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1 year 7 months ago #53874 by texasbonfire
It all depends on your unique circumstances.
When I was diagnosed, I could not find much information on people like me since the average age for diagnosis is over 70 and in men. The statistics were hard to digest. Being scientific and a math lover, I dug into research to find some current statistics that applied to me and what MD Anderson was lining out for treatment. I had to piece stuff together. Then I decided that I was going to change the statistics by surviving!
I am 58 y.o. female with no secondary conditions like high blood pressure, diabetes, etc. No regular prescriptions other than a hormone patch due to a hysterectomy 20 years ago. I have maintained a moderate level of activity and weight. It was a surprise to be diagnosed in February 2017 with stage 4 muscle invasive BC to the lymph nodes. I surprisingly did well on four rounds of Ifosfamide, Gemcitabine and Doxorubicin. Then two rounds of Gemcitabine with Cisplatin. Stopped since I began having ringing in my ears and my bone marrow was not rebounding fast enough. Surgery is set for August 30. My lymph nodes were in complete remission after four rounds of chemo and a cystoscopy after 5 rounds revealed there was anything worth snipping.
BTW... Cisplatin was a trip - literally. A roller coaster ride that wasn't pleasant.

I wish you the best and relaize that most stats out there do not fit you!
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1 year 8 months ago #53706 by lotech35

You really cant go by odds or percentages, We are all different. but I do know that my nonmuscle invasive BC is now muscle invasive and my best chance at beating BC is an RC, I think getting rid of the source is better than leaving it in.
I have a Wife of 9 yrs, 5 kids, 3 grand kids, I know they count on me and my thought is to do what I can to beat this !
I may not win, but I'll always keep trying for me and them! And yes I agree with Cynthia change your user name your better than that!

Diagnosed Sept 2015 noninvasive
1st turbt Oct 3 2015, 2nd turbt Nov 13 bladder,
Completed 6 BCG initial treatments 01/11/16 02/09/16 No Cancer!
08/09/16 Cyto shows red spots on bladder, TURBT prostate scheduled
09/12/16 Cancer is back Ta prostate ,T1 high grade bladder papillary uthelial....

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1 year 10 months ago #53341 by Cynthia
You are welcome as the sunshine in May here. However your user name bothers me a great deal. We are all equal here, invasive, noninvasive, old or young. Because our enemy is larger than any of our differences. Could we please chose a different user name for you? I vote for Survivor1
You will have a lot to think about I am sure others will chime in about nerve sparing and other possible options.
I believe everything comes down to the bottom line. Your bottom line may differ from mine but only you can decide what yours is. For myself it was finding a solution that gave me the best change to go on having a good life. Sometimes in life there are no easy solutions but I promise it is doable.
Let me know about your username, who knows you may get other suggestions.

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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1 year 10 months ago #53338 by _substandard
I had the chance to discuss my case with an experienced urology oncologist in Riverside, CA today. I've also asked him the same questions we discussed here in this thread and his answers were rather encouraging:

As we know Chemotherapy does not really kill the entire high grade/aggressive (same meaning) type of cancer though it has good chances to shrink it before the RC surgery. However chemotherapy works well in killing the microscopic cancer cells which might already had spread from the bladder into the blood stream. That way chemotherapy helps a lot to prevent even the highly aggressive cancer from re-occuring.

The official 50-60% survival rate for our "T2 club" is therefore not entirely accurate for our 40-60 year old generation. Even considering the aggressiveness of our cancer type doesn't influence this notion so much.

As for the option to not remove the bladder after chemotherapy he said that procedure was standard in Italy for some time. The measured rate of re-occuring cancer was around 90% though.

I'll keep you posted!
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