Gathering info

zanski
zanski Member Posts: 1 *
edited April 2022 in Bladder Cancer #1

My 41 year old brother was just diagnosed with high grade bladder cancer that invades the muscle. His doctors want to remove his bladder. My question is how is the quality of life after the surgery? My brother is very active with skiing, hiking and camping, we are being told by his doctors that after his surgery due to the how delicate the neo bladder can be that he will no longer be able to continue with any of these activities ever again. Looking to hear from actual patients that have had the bladder removed and how it’s effected your quality of life.

Comments

  • barehead
    barehead Member Posts: 37 Member
    #2

    Am 68 and an active person. Had my bladder removed in July, 2020. After talking with folks whom had the 3 different diversions, I selected the ileal conduit (urostomy). It does not hinder my activities. I swim, ride my bike, walk, mow the yard, etc. One of the best things is that I no longer have to get up 3 or 4 times a night to urinate. Simply hook up my night drainage and never have to get out of bed. Maintenance is simple as well. He can contact Imerman Angels to ask to speak with folks with the different type of diversions to get their real world experiences. Also be sure to go to bcan.org for tremendous medical info on bladder cancer and its treatment.

  • THX
    THX Member Posts: 3 Member
    #3

    Me: Bladder cancer stage 1 but was high grade aggressive because it had mutated. Dr wanted removal but I opted for treatment. Couple surgeries with BCG infusion between. Then surgery and BCG and interferon. Still coming back so went for removal. I wanted the safest least problematic surgery. Removal and ileal conduit. Didn't go for the neo bladder because I read about too many problems. Like wearing a diaper or having to self catheter to empty the bladder 6-8 times a day.

    Once the ordeal from the surgery was over. With thoughtful care you can go about your life pretty much as usual. For me the blood supply was cut so no erections. Kind of a bummer but better than the alternative. Good quality bag and flange is a must. I made my own apparatus to use a leg bag at night. Then eventually I found if I have an empty bag when going to bed I could go overnight with just the attached bag. Just don't roll over on it when it's somewhat full. I think most of my friends don't know I have a bag.

    My attaching procedure. Heat water in cup. Put flange on cup while showering. I barely touched my stoma the first year. Don't worry about it. Wash it with soap and water. I shave around the area the flange goes so it sticks good. Be careful to not cut the stoma. I adhere the flange and place a folded tissue over the the stoma. Then use first a 3/4" PVC couple then a 1" couple to press the flange tightly to the skin. The smallest size PVC has to be larger than the stoma because you don't want to press on it. And it almost always bleeds. Don't worry about it. Maybe that's too much info. This is my first post.

  • rvezina
    rvezina Member Posts: 7 Member
    #4

    I had my bladder removed in October 2022. That is surprisingly not bad except for sex life. I wonder though since I now have bladder cancer in my lungs anyway should I have skipped the operation or skipped the chemo and had the operation sooner.

    My recommendation would be very strong to skip the chemo and get your bladder removed today or as soon as possible. Time is of the essence to keep the cancer in your bladder. If it stays in your bladder you live if it gets out you die fairly quickly.

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