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Questions about Ostomy and cystectomy in males

Hello-my name is Ed and i have been a bladder cancer patient since
July 2007. I have had as of today, sixteen TURBT surgeries, BCG treatments( 28 over a three-year period) and Gemcitabine treatments
last Sep. I am considering asking for a cystectomy if it would relieve
the chronic pain i live with daily, particularly when i urinate.I would
appreciate hearing from any guy that has had this done and how it
has impacted your life.I have always been told as the tumors are only
Stage 1 or 1/12 that i don't qualify for any chemo options different than
intravesical - thru my penis. I consider myself generally a positive man
but i am tired of suffering and my quality of life and ability to physically
do work and things i love has been reduced. Any info to help me make
an informed decision is hepful. Thank you Ed

  1. @6elroj021 - I am a female but had RC years ago to avoid just what you have been dealing with and I was stage one. I also wanted my cancer gone. I accomplished exactly what I hoped for and still have a great life 7 years later. Have you discussed this surgical procedure with your doctors? What are their feelings on it? Your quality of life is important and it might be of value to make sure they know how you are feeling. Sometimes people who are not experiencing what we have do not comprehend how it impacts our lives. Also you do not want to move to another stage. 14 years seems like a long time to deal with this. I pray you get the answers you need. My best to you. Linda ( moderator, Bladdercancer.net team member)

    1. Thanks for sharing, Ed. I'm also female and had a RC. Your quality of life with an ostomy is good and you can live a long life with an ostomy. The saying in the ostomy community is that you die with an ostomy, not because of an ostomy. I did not have many options due to being diagnosed at a late stage, but can definitely answer some questions, as my colleagues can as well. Are there specific things that you want to know about? ~Liz, Moderator


      1. Ed:


        Male - currently 62 - diagnosed at 54 with multiple tumor, Stage 2 Ta High-grade bladder cancer. 8 years cancer free!!

        Obviously, this is not medical advice but simply my experience with my set of variables and with my doctors. You can read all my posts here on the site - https://bladdercancer.net/community/advocates/paul-hebert


        I did not have the option you're currently using since they were worried about me getting to stage 3. They said - chemo - then surgery. I had to cut chemo short because the cancer wasn't responding. I had a cystectomy and prostatectomy. Not sure if they always to both but for me - they found a small amount of cancer in the prostate when they did the surgery so out it went.


        I opted for the neobladder (internal bladder made from ileum) so I don't have any external evidence of my disease other than some scars.


        Keep in mind that you may opt for the neobladder but if they get inside and find you have cancer in other areas - like the ureters or urethra - you may need to have an ostomy anyway - so be prepared when you wake up from surgery for that possibility.


        Lifestyle-wise it hasn't been too much of a difference. It's a little more maintenance but not much. Just different.


        The good:


        - No bags.
        - No cancer.


        The bad:


        - Impact on sexual function. Now that may be more from the prostatectomy than the cystectomy - who knows - just know when you mess around down there that is very real possibility you're not going to getting the same "response" as before. There are options however so it rarely is 100% no-go.


        The "different" - not good or bad - just an adjustment


        - Have to set an alarm every 3-4 hours to remind yourself to go to the bathroom
        - May have to catheterize depending on your outcomes. I rarely had to after the first 6-months but I think I'm on the good end of that spectrum
        - May leak once in a while
        - May wet the bed once in while (put a pad down - you get used to it)
        - Sitting instead of standing is more comfortable when urinating but not required - but keep in mind if you're at a concert and all they have is portapotties - yuck.
        - I travel a lot so I always have to be sure to pack a pad for the bed, some catheters just in case, pads for my underwear just in case, sanitizing wipes for toilet seats, etc. in public bathrooms.


        NET-NET


        I'm glad I did it. I don't have cancer.


        If I had the option to go through what you're currently going through I don't know what I'd do.


        Hope this helps somewhat. Let me know if you have any more questions.





        1. I'll just echo what Paul Herbert said. My life got back close to normal after my newbladder replacement. I'll also echo what he said about "performance." Mine was definitely impacted. But that's better than having cancer. Good luck with whatever you decide.

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