Bladder removal

17 hours 20 minutes ago - 17 hours ago #61152 by dtat60
Replied by dtat60 on topic Bladder removal
Bartdb,

I found your post very inspirational and amazing. Your statement "I am 85 years old and had the surgery" in all honesty blew my mind. I'm 71 and just hoping at this point to make it to 80. I am 5 years post diagnosis and treatment - 24 BCG treatments - and now go every 6 months for cystoscopy. I know no one can predict the future but hearing your story is very hopeful for me. Of course I hope that I never have to have any further treatment but weighing the choices at an advanced age does give me pause. 
My MIL had open heart surgery at 84 - had a pretty easy recovery - and is now 90 and continues to do well, so I know these decisions are possible.
You had a plan and it seems things are working out well. Major kudos to you for telling your story. You made me feel and appreciate my "young age" even more today.

Peace and Love

08/16 Blood in Urine;09/16 CT Scan, RPG, Cysto;10/16 TURBT;12/08 BL TURBT;01/17 6X BCG;05/17 NED, 3X BCG, 9/17 NED, 3X BCG,1/18 NED, 3X BCG,7/18 NED, 3X BCG

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2 days 7 hours ago #61148 by Bartdb
Replied by Bartdb on topic Bladder removal
Perry 3754

Perry, I understand how difficult this decision is ... I am 85 years old and had the surgery in August of 2021.
I can also tell you that I do not regret having the surgery. The surgeon removed the bladder, prostate and close lymph nodes. I had a close friend that I played football in high school with that had the exact same surgery done a year and half ago. I would suggest that if you have the procedure done ... try to find a support
group or someone to guide you thru the first couple of months post surgery, it helps to have someone to who has had the procedure done. 

The only problem I have with the Ostomy bag is emptying it ever 45 min. -  1 hour ... ha. other than that I can honestly say it has only been as bad as you make it. I had a pet scan done one month before the surgery and it revealed no cancer anywhere except in the bladder. 

My wife and I have been happily  married for 45 years ... our goal is to make it 50 years. My surgeon gave these three options at the preop interview ...

1. If you do nothing ... you have 0 chance of survival 
2. If you do chemo, radiation or some of the immunology treatments (BCG) ... you have a 5-10% chance
3. If I remove the bladder ... I can almost guarantee (barring heart attack, etc.) you 5 years

We considered them and chose the latter ... and have never looked back. On the day I was released from the 
hospital my wife was taken to a dialysis center. She was so sick she had to begin dialysis that day. So I had a 
friend pick me up and I am convinced that we will make 50 years. 

Stay Safe and make the decision that is right for you. 

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4 days 2 hours ago #61144 by Jack R
Replied by Jack R on topic Bladder removal
Perry3754,

RA can be a tough choice to make - as evidenced by the disagreement of the doctors. It winds up to be your choice, based on your situation and gut feelings alone.

I am approaching year 7 of recurrent CIS. I was first advised to have a RC five years ago. Subsequent opinions have been more yes than no for the RC. The "standard of care" favors the RC for CIS. Always left unanswered is the question; will the CIS become invasive?

I am a lousy candidate for major surgery. I am old and multiple prior surgeries pieced me back together following a massive traumatic injury. I factor my condition into my decision to hold off on an RC. I have been told I am playing with fire; I accept the risk of not accepting an RC when suggested.

But I don't completely rule out a RC. What I do want is to be followed closely enough that IF AND WHEN CIS makes a move, it will be detected early enough to allow the RC. I have not yet found a doctor who is confident that CIS can be monitored that closely. Most doctors are uncomfortable with my  stance - I always have to explain that I fully accept the results of my decision. If I was 40 years younger, in excellent shape and not a surgery risk, my attitude would be different.

Medical insurance coverage, need to be employed (I am retired) and all manner of living situation are decision factors. You mention having 2 weeks to make a decision, I have no time limit for my decision. 

I hope this helps. You have two opinions from which to choose. You know your situation and medical history. Have ALL of your questions been answered by the doctors ? Will you have options open later if you decline now ?  What are the longer range plans of care, from the two doctors? 

I wish there was an easy answer. I would share it if I had one. I am comfortable with my RC delaying decision, and I do find that comforting. It is a constant chore to keep repeating the same tests on a very frequent basis. Bottom line, it is your choice.

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

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1 week 9 hours ago #61142 by Alan
Replied by Alan on topic Bladder removal
Perry,

If you cross the threshold to needing a radical cystectomy, I am attaching a file of questions others have used when approaching the doc. There are simply too many questions so use as you see fit.

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.
Attachments:

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1 week 10 hours ago #61138 by sara.anne
Replied by sara.anne on topic Bladder removal
Hello, Perry.  I moved your post to a new topic where it may be seen by others who might answer your question.

Sara Anne

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

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1 week 10 hours ago #61137 by Perry3754
Bladder removal was created by Perry3754
Just was advised to have bladder removed by a great doctor.
He told me to get second opinion with another well known doctor.
That doctor said too radical of  operation now.
I have 2 weeks to decide.
I have CIS, second doctor said it has not invaded for 4 years, do BCG again. He said 2 years doing nothing then it might invade.
Well big decision!!!

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