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Bladder cancer- Pain 5 months after TURBT and Mitomycin C

Loz321
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Hello,

I'm hoping someone may be able to offer me some advice or share their story. I'm 39 and was diagnosed with Grade 1 bladder cancer in July which was removed the same month. Whilst still under general anesthetic, I had Mitomycin C (chemotherapy) in my bladder for 1 hour after the TURBT.

Before the procedure, I asked how long I would feel pain for and was advised I would be uncomfortable for a couple of days. At no point was i advised to rest (which I later found out should of been 2 weeks minimum) and I was back at work 2 days later and doing gentle aerobic excercise (which I now can't quite beleive)!!

I now know that this was wrong and I feel my body probably didn't have time to heal. I am in constant pain daily and I'm due to have a general anasthetic cytoscopy in 3 weeks time (the urologist tried under local anesthetic but it was too painful). I'm having the cystoscopy to check the cancer hasn't returned, but my main concern is the constant pain I'm suffering.

I've seen a specialist in London who took blood, urine and CT scan, which all appeared inconclusive. I was told it was likely I was suffering from carcinoma in situ and he wanted to take deep tissue biopsies under general anasthetic, but after speaking to the urologist who performed the TURBT in July, I cancelled this operation as I was told my bladder looked healthy whilst he removed the cancer (TURBT). I'm very glad I cancelled this, but still no closer in understanding why my bladder feels like it is burning constantly.

I take pain killers (ibruprofen/paracetamol) every 4 hours, but they just take the edge off. I also take 5mg solifenacin daily and if I miss a dose, the pain is unbearable. I cannot undertake any form of excercise as this aggrevates my bladder really badly.

Has anyone ever suffered with an aggrevated bladder following Mitomycin C? I have read that it can cause ulceration and pain following TURBT. The pain is without a doubt getting worse, week on week and I'm hoping the urologist can find the answer in December whilst he performs the cystoscopy. 

If anyone can share a similar story/offer advice, I'd be most grateful.

  • Welcome to Cancer Chat, Loz321.

    I'm sorry to hear that you have been diagnosed with grade 1 bladder cancer in July and that you have been feeling poorly.

    Hopefully some of our members who have been through a similar experience will come along shortly to chat with you and give advice but also, feel free to give our cancer nurses a call if you feel like talking to someone medically trained might help, they're available on this phone number 0808 800 4040, Monday - Friday between 9 a.m. - 5 p.m.

    I hope this helps.

    Best wishes,

    Renata, Cancer Chat Moderator

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    Hi Loz321. I'm new to bladder cancer but have just had my TURBT a week ago. So far my symtoms sound like yours but obviuosly its early days. How are you getting on?

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    I to have the same problem as you after my latest TURBT which was carried out for investigations as I had started to bleed some 6 months after being told that I had the all clear of a muscle invasive tumour. When they done this latest procedure they scrapped away the calcification over the original tumour site this calcification having been caused by radical radiation. 

    Since then I have had constant pain / burning sensation

     painfully  pee a lot about every half hour 24 / 7 not getting any answers from medical team they say it will ease in time. Really getting me down does anyone have any suggestions other than painkillers?

  • Offline in reply to trevspain

    Hello! Thank you for your message, I’m sorry I’ve only just seen your post. Since November I’ve cut gluten and sugar from my diet and the pain is almost gone. I sought help from a nutritionist and homeopath and they both told me it was likely that the surgery and mitimycn C had caused the intolerances. I don’t have a clear understanding but cutting these from my diet has dramatically improved my symptoms. 

     

    There red is a book called ‘better bladder’ that I purchased on amazon. It is FULL of helpful advice and recommendations. Good luck I hope you’re feeling better soon, I know how awful the pain is...

  • Offline in reply to trevspain

    Hello! Thank you for your message, I’m sorry I’ve only just seen your post. Since November I’ve cut gluten and sugar from my diet and the pain is almost gone. I sought help from a nutritionist and homeopath and they both told me it was likely that the surgery and mitimycn C had caused the intolerances. I don’t have a clear understanding but cutting these from my diet has dramatically improved my symptoms. 

     

    There red is a book called ‘better bladder’ that I purchased on amazon. It is FULL of helpful advice and recommendations. Good luck I hope you’re feeling better soon, I know how awful the pain is...

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    Hi my husband has had bladder cancer for 11 years, he has regular cystoscopy, which is very painful for him, he has had chemo twice and has been told he will have to have three times a year, the main problem is the discomfort he can not wear tight underwear, he has to live in track bottoms as he cannot have anything touching his stomuch, please help.

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