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2 weeks 2 days ago #60002 by Alan
VT Jeff,

There is life and good life after a cystectomy. Just from my passion of golf I personally know 3 people that are golfers/friends/acquaintances. One has had the neo bladder, another the pouch (the first two still play an play as well as before) and the other the illeal conduit (although he gave up golf). So there is not much you wll give up except beating this cancer!

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.

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2 weeks 3 days ago #59996 by joea73
Hi Jeff,

Thanks for sharing your thoughts. I am glad you caught early while it still was in the muscle layer. I know personally a few people who had neo and those who chose IC. Neo tends to be early 70 and under. All neo surgeries were done in a very large hospital and by the urologist who has done many neobladder surgeries.
I have noticed a few people with IC have developed a hernia. Neo and IC see mucus. Also, finding a surgeon
with successful records of nerve-sparing is especially important to a young man like you.

I have found an interesting thread on bladder preservation here. I did not know you had to visit the hospital
so many times and so long for TMT at Massachusetts General.

https://bladdercancersupport.org/forum/3-newly-diagnosed/45312-bladder-preservation.html?start=0

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2 weeks 5 days ago #59985 by VTJeff
Thanks Sara Anne & joea73,

I guess after 58 years I feel somewhat attached to my bladder & prostate! Seems a reasonable initial response when you hear your bladder & prostate need to come out, and that the complication rate for this surgery is very high. Yes my life is my #1 priority but when places like Mass General tout that their bladder preservation approaches are a standard treatment with outcomes similar to radical cystectomy, it makes one want to consider quality of life issues as well. What they don't emphasize is who the good candidates are for the tri modal therapy approach (seems mainly folks who probably can't survive the radical cystectomy), and that the radiation can pretty much ruin your bladder anyway...

After getting more details from my URO on his observations during the TURBT and my pathology report, and reviewing Kyle's excellent youtube series "Bladder Cancer & Treatment", I realize and accept the fact that my bladder and prostate will be coming out (but I will still miss them!).

Guess I'm on the bus.

Regards,
-Jeff

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2 weeks 5 days ago #59983 by joea73
Hi Jeff,

You mentioned that the concept of removing my bladder/prostate is really difficult to accept.
What makes you think that way?

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3 weeks 1 day ago #59974 by sara.anne
Hello, Jeff. So sorry to see you here. I know your diagnosis was a real shocker.

Your urologist is right on both issues. And referring you to Dartmouth was right also. You want to be at a place that sees and treats a LOT of bladder cancer cases and where they are up on the current best treatments. I am not familiar with a lot of success with bladder preservation with the type of cancer that you have. I am familiar with several cases where the attempt was a big mistake. What is more important, your bladder or your life? This IS a topic that you should discuss with the oncologist/urologist at Dartmouth.

As you are healthy and relatively young, even though cystectomy is major surgery, you should do well. We have members here who have had a cystectomy who drive race cars and even scuba dive! Yes, there are things that will be different, but you can have a very good life.

One of the things that you and your team will need to decide is which of the three major types of diversion you will have. Here is an excellent summary of the basics of all three:

https://my.clevelandclinic.org/health/treatments/12546-urinary-reconstruction--diversion

Wishing you all the best

Sara Anne

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

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3 weeks 1 day ago #59972 by VTJeff
Hi All,

Interested in getting feedback & suggestions - just got the call from my URO with the pathology report from my TURBT – poorly-differentiated urothelial carcinoma, high grade, in muscle layer. Stage T2B. My original CT scan showed the mass in the bladder but no indications of cancer in lymph nodes or elsewhere.

I’m a 58 year old male and thought I was healthy until I was diagnosed with a DVT in my calf in May 2020. About the same time I tested positive for COVID antibodies - I had a bad cold in mid March after attending a large trade show and figured it was COVID. After the DVT diagnosis I asked my PCP if we should do more testing to find out why I got a DVT – told me no it was due to all the driving I do (I live in VT and my girlfriend lived in MN so I did many drives & flights to and fro over the past few years, my bladder cancer diagnosis enabled her to get permission to work remotely from VT). I later found out that 5 – 20% of folks with “unprovoked” DVT are found to have cancer within 12 months.

A month into taking a blood thinner (Eliquis) for the DVT I had several episodes of blood in my urine “gross hematuria” and my PCP (basically a school nurse) didn’t seem too concerned. Two weeks after completing the blood thinners I once again had blood in my urine and passed several tissue fragments. PCP referred me to URO who ordered CT scan, blood/urine work. The CT scan showed a mass in my bladder and my URO scheduled a TURBT - he described the tumor as the size of a golf ball and odd-looking. URO had to scrape pretty deep and I ended up with a Foley catheter for 7 days (which was unexpected and not very pleasant). Just got the pathology report yesterday (2.5 weeks after the TURBT).

My URO has scheduled a lung x-ray, Cat scan, and bone scan to look for cancer outside of the bladder. He says the standard practice for my diagnosis is systemic chemo followed by removal of the bladder & prostate. Has referred me to a urological oncologist at Dartmouth Hitchcock in NH – I thankfully live nearby and they have a great reputation.

But the concept of removing my bladder/prostate is really difficult to accept. I’ve read articles on bladder preservation treatment for folks who either refuse a cystectomy or are too unhealthy or old for this extensive surgery. Their outcomes and life expectancy don’t seem that much worse than those receiving cystectomy.

So I would appreciate any input, suggestions, and recommendations from those with experience. Sorry for all the details but it helps to write it all out.

Thanks in advance,
-Jeff

P.S. I am having trouble figuring out the sequence of the posts – seems to be in reverse in my browser – or is it just me?

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