Bladder Removal mid to long term side effects

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Hi all hope you are well.

Would bods who have had their bladder removed be OK speaking about any mild to extreme mid to long terms problems they face please? Saw the Hannah Fry doc and she spoke getting lymphodemia following radical surgery for cervical cancer and It got me thinking.

I have had 3 rounds of bcg/mitoycin which did not work and last time they found and removed another s1g3 1cm tumour. I have a meeting with the surgeon who is def pushing for removal , but I will continue to say no and ask for 'watchful waiting'. However , I do think eventually I will have removal but hopefully a few years away.

Many thanks

Pienmash

  • Hi Pienmash,I was diagnosed with Squamous cell cancer in July 2019.This tends to be more aggressive and mine had invaded the muscle T3b G3.I had a cystectomy in September 2019 and have a stoma.For me it has been a life saving operation.The tumour was causing an obstruction which meant I couldn’t pass urine easily and kept getting urine infections.The recovery was slow but after 8 months I was able to continue caring for my late mother with the help of 2 carers.The main long term thing I have noticed is a lack of stamina.I do have other chronic unrelated health issues that mean I’m not as fit as I should be.If I do too much in the house and garden then I start feeling sick.Other than that I have made a good recovery.I had no problems whatsoever adjusting to the stoma.I had a couple of small leaks at the beginning but nothing since.I regained all the weight I lost after the surgery.I did have some problems with my bowels to start with as I had paralytic ileus as a complication.It is major surgery but I’ve never regretted it.Best wishes Jane

  • Thanks 60 . Appreciated. A big part of me is to wait to see if it invades the muscle , then have it removed and or have the chemo/rad route , like Rily. 

  • I think it must be harder if you have a choice.Radiotherapy wasn’t an option for me and chemo wasn’t suggested.The type of cancer I had doesn’t respond that well to them.Best wishes Jane

  • Hi Pienmash

    I chose not to watch the documentary, but I have gone through the most extreme and radical surgery possible for cervical cancer and I don’t have lymphoedema. I don’t have any problems from my bladder removal, and haven't had any in more than 2 years since my surgery. My lasting effect would be fatigue-I get tired more easily these days and can’t do as much. But that’s a small price to pay for being alive.

    Since my only other option was palliative chemo, I’m not in the same situation as you, but I was desperate to have everything removed to improve my chances of survival-including my colon which was badly damaged by previous radiotherapy but which the cancer had not yet invaded. I would not have been happy to have the surgery without my colon being removed as I saw how aggressive my cancer was when it recurred, and how quickly it spread within my pelvis. The way I looked at it was that I was giving myself the best possible opportunity to live without things becoming worse and making me incurable. As it was, all of my cancer was removed with good margins and I have recovered well. 

    I live a basically completely normal life apart from the fact that I don’t go to the loo in the same way as everyone else and have 2 stomas, neither of which has caused me to have any lasting effects or ever be readmitted to hospital/required further treatment of any sort. I have never for a single moment regretted my decision to have the surgery. 

    Sarah xx


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  • Thanks Sarah , appreciated. I am just after some time to get my life settled again. I appreciate your openess. In some ways I wish I did not have a choice! Decisions decsions!

  • I think if it was me I wouldn’t want to wait until it became muscle invasive.

  • I think most would share that view...but of course these decisions are all uniquely personally informed. Also , I am still weighing up the stats that say there is a circa 15% chance that my cancer will become invasive and that there is also a 10-30% chance that the cancer will return after removal. Removal will dramatically affect my mental health and will stop me from building a life back after having a breakdown. It's all a bit scary tho I have to admit.

    Pienmash

  • I hope you are building your life back,mental health is so important.I can understand now why you would want to avoid a cystectomy.Do you have supportive family and friends ? Best wishes Jane

  • Thanks again Sarah...the break down was over ten years ago and it was only about 3-4 years ago that I started to feel my old self again and then I got kidney cancer and then bladder cancer. I have some good support and I feel much much better and I just want a few years (i am 59) to enjoy life again. I worry having the RC now would trigger me back along a path of bleakness. 

  • I’m glad you have good support and are feeling better.It’s rotten for you to have gone through a breakdown and then get cancer.I hope you get more good years.Best wishes Jane