Received 2nd Opinion

4 years 4 months ago #56753 by Jack R
Replied by Jack R on topic Received 2nd Opinion

I fully understand how hard you got slammed with the cancer diagnosis. Hit with a brick out of nowhere. Been there. Opinions about treatment don't become firm until the cancer is firmly staged.

Things can move fast, and be confusing. It is hard to know which way to turn.

I found great help once I had a consult and diagnosis at a university hospital that specializes in bladder cancer - it cleared up a lot of the confusion I felt from coming from my initial treaters. I don't know if such a consult is possible for you, but it could be worth the effort.

From your location description, there are a number of NIH Cancer Centers (somewhat) near you. If it sounds like something that would help you reach a decision, you can visit the web site below, and telephone a center to see if they might be of assistance. I just know it helped me to get a handle on dealing with the cancer.


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

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4 years 4 months ago #56729 by tgrocky
Received 2nd Opinion was created by tgrocky
Hi there this is TGROCKY again and I wanted to share my second opinion I got on February 1st, 2019 at 9:30am with a Dr Zelters of Bryn Mawr in Pennsylvania He is a very down to earth doctor and has a very good bedside manner which I really liked and he was able to answer my questions I been waiting for even though I still did not have my 2nd TURBT yet as that is scheduled for Feb 21st. Here are my options:

1. Stop everything and do nothing (He said I would have 2-3 years to live.)
2. Get a Radical Cystectomy and a Neo-Bladder now without needing a 2nd TURBT (Best survival Rate)
3. Get the 2nd TURBT and if the pathology report shows:

Non-Muscle Invasion:
A) BCG Treatments (6 weeks and then maintenance treatments)
B) Radical Cystectomy/Neo-Bladder

Muscle Invasion: A) Chemo/Radition (At least 6 months to a year)
B) Radical Cystectomy/Neo-Bladder (But will MUST have 3weeks+ Chemo prior)

At this point I am goint to wait and get my 2nd TURBT and when the pathology report comes back and it is.
non-invasive I am leaning getting the BCG treatments and if it is invasive then I am pretty sure I am
going with chemo/radition. My reasons for these choices are because I want to do everything possible before
making such a BIG change in my body as well as my life. I know either of these decisions fail and my cancer
comes back and I know as I was told it willbe a lot more agressive then now it will make getting a RC and a
Neo-Bladder a lot more difficult to do, but it can still be done.

I am so happy that I went for a second opinion as I believe that anything of this importance you MUST
get a second opinion as you are talking about your life.

Anyone have any thoughts on this?


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