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

1 year 3 months ago - 1 year 3 months ago #57400 by Cynthia
Schulz, I am sorry you are having to deal with this but you are welcome here. As you know the type of cancer you have been diagnosed with is rare. As a matter of fact I have been dealing with bladder cancer since 2004 and I have just done research so I could try to answer you in a halfway intelligent way. What you are dealing with does not fall within normal bladder cancer protocol as it is a different animal. The type of chemotherapy and treatment you will receive will be different than someone dealing with what we normally see here. I also looked and could not find a support network that would better serve you online I would assume that is due to its rarity. Having said the above know that even though we may not have specific information for you we will do the best we can to offer you the support you need. For example we may not have experienced the exact drugs used in your chemo but we can share our experience handling the side effects of chemo in general. If nothing else we are here to listen if you need to talk.

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 3 months ago #57388 by Schuls
I was just diagnosed after cytoreduction hipec with urachal. I 52 and so afraid. I have andocarcinoma with mucinin
Cancer cells were in urachal, upper lower omentum and peritoneal wall. About to do chemo to the stomach. Did you do any chemo? If so what type and how long?

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2 years 3 weeks 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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2 years 3 months 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.
The following user(s) said Thank You: lotech35

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2 years 11 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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3 years 3 weeks 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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