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T-1 high grade, scheduled for bladder removal 29 Sep. Decisions to be made…
T-1 high grade bladder cancer found 1 June 2017. surgery to remove tumor on 11 June and again on 28 June to restage. Still T-1, but referred to the Mayo Clinic in Rochester,MN. first appt on 5 July with Docs for discussion.
They recommended removal of bladder and Neobladder. Went back on 1 and 2 Aug for CT’s and consultation.
I have a date of 29 Sep for surgery and must give them the answer on which diversion I want…This is a hard decision to make, but I am still on the right side of the grass!! I will be looking thru the forum for pros and cons for the neo as I am not sure it is the way to go for me…53 and feeling good yet…I feel I am going to the right place to be treated and hope to hear from others that have been at the Mayo. Thanks in advance… -
6 Replies
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Fishfreak,
Don’t be a stranger! Glad the bladder cancer is squashed but I am sorry to read about the kidney. Trusting that will be the end of this!
Have a great Thanksgiving.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
One year with the urostomy bag and doing good. Currently on 2nd round of 3 rounds of chemo then removal of left kidney and ureter. 2cm spot in kidney was resected in September. Looking at surgery in January 2019. Mayo Clinic has been good, trying to stay on top of this…
Joe,
Thanks for the report! We all learn from each other!
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
Fishfreak11,
I am 6 months post radical cystoprostatectomy with an ileal conduit. I went through all the same research and decided that the IC was the best choice for me. I don’t have a desk job and I’m moderately active all day climbing ladders and such. I have had no issues with the IC in doing anything I want to do. I have also had no leaks and regularly get 1 week out of each appliance. I spend only about 20 minutes once a week in changing the appliance.
I chose the IC for a few reasons. I didn’t want to make a decision that best suited me now at 45 years of age that made life more challenging as I get older. The IC can be maintained by a caregiver if that’s where my journey takes me. More importantly, I chose the IC because for me, I saw it as the quickest way to adjust to a new normal and get on with life. I knew, personally, that I would struggle with the mental fortitude to train a neo bladder. 6 months later, I have no regrets.
Stay strong.. You’ll beat this. Best of luck to you.
Joe
45YO male
11/30/2015 Left nephrectomy
2/17/2016 left ureterectomy
8/10/2016 cyctoprostatectomy w/ileal conduit diversion
Cancer free since!
Fish,
I assume you have entered “Diversion choice” into this site’s search engine and read a large number of comments about reaching a decision. Three basic choices, and everyone tries to decide what will serve them the best in the future. Like others, I have my personal choice ready when the day comes; I’m not sure that I could recommend my choice to others – each needs to decide based on personal circumstances.
Of course, there is always the possibility that one’s choice becomes unworkable at surgery. I have the attitude that whatever diversion ultimately happens, the important thing is beating this cancer at the source.
Wishing you well at your surgery 3 days in the future. Stay strong and have a positive recovery – timely RC is the gold standard to beating bladder cancer.
Best,
Jack
6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021
Mayo has an excellent reputation, as you know. You are fortunate to be there.
As for diversions. As you have probably read, most people are happy with whatever they chose once they are “acclimated” to it. It is, indeed, a very personal choice. I am sure that you have already probably read this, but this is an excellent summary of the pros/cons of all three
https://my.clevelandclinic.org/health/articles/urinary-reconstruction-and-diversion
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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