Bladder Cancer after long term catheter use

Hi Debsonline,Welcome to our friendly and supportive group.I would urge you to ask for referral now.You need a cystoscopy to investigate what condition your bladder is in.I didn’t use catheters but developed Squamous cell bladder cancer due to repeated infections from chronic Interstitial cystitis.I ended up having bladder removal in 2019 and life is much better without the pain,urgency and frequency.The fact that you have blood in the urine should get you fast tracked.It may be that your symptoms are due to inflammation from infections but without a cystoscopy you won’t know for certain.I hope this helps.Best wishes,let us know how you get on.Jane 

Hi Jane, thank you so much for replying. I’m sorry to hear that you developed squamous cell bladder cancer, but it is good to hear how positive you sound about life following your surgery. 
I have seen something online about people who have had squamous cell bladder cancer after using catheters, so that is what I was worried about, but didn’t like to mention it to my doctor because I thought she would dismiss it as anxiety. Even with the blood in my urine she doesn’t seem to be taking any action. Anyway, I think after I finish my current course of antibiotics (the fourth this year) if symptoms return again, I will definitely request a referral to put my mind at rest. Thank you for giving me confidence that I should do this, and I will post again once I am further forward. Take care. Best wishes, Debs.

Hi Debs,Long term catheter use is a risk factor for Squamous cell I have been told this by urologists.Can you see a more proactive doctor ? Blood in the urine should be investigated.I think women have a harder time getting their urinary symptoms taken seriously than men.Definitely chase up a referral.If it’s inflammation they may be able to give you something to help with the symptoms.Keep us posted and good luck.tc love Jane x

I think permanent catheters are a greater risk than ISC, and the common risk is UTIs. But I agree with Winkers that it's worth pressing for a referral for another cystoscopy.

Interestingly, I self catheterise having had bladder removal & neobladder, but in 14 years so far no problems.

Good, relevant advice by previous posts. I have had long term in-dwelling urethral catheters since late 2018. In my case their use was caused by bladder cancer treatment (radiotherapy + TURBT  x 2)  which left my bladder scarred and less flexible. Normal expansion and contraction often led to excessive bleeding, hence the constant drainage offered by a permanent catheter relieving those symptoms. In the approximately 7 years of permanent catheter usage I've had about 5 infections followed by a course of antibiotics. I still have mild to moderate bleeding quite often but it usually subsides in 1-4hrs. I keep my GP informed of the symptoms and Urology at the hospital also keep their eye on things as I'm on palliative care i.e. symptoms are dealt with as they arise to maintain quality of life for as long as possible. It is working for me. As suggested by previous posts, keep your GP informed and seek a 2nd opinion if you have concerns.  Ray x      

Thank you Teasswill, that’s very helpful. It’s probably good that I’ve not had many infections for a long time, but worrying that I’ve had so many recently, when nothing has changed with my regime. Great to hear that you’ve been self catheterising for so long problem free!

Hi Ray, thanks for your reply. Sounds pretty positive, that you have only had 5 infections, but sorry to hear about the bleeding, which must be quite worrying. It’s good to hear that your GP and Urology are keeping on top of your symptoms though, that sounds reassuring. I’m very in awe, hearing stories from people like you who cope so well after difficult treatments. 

Hi debs I had a bladder tumor removed I’m may 24 they caught it very early I have bhp and have had urinary issues for about seven years last October I saw a specialist to check my outflow which had got  worse I was diagnosed with chronic retention and started  self catheterisation morning and evening about two weeks later I started with a uti so eight different seven day courses of antibiotics and numerous tests with blood and leukocytes I have now started Hiprex and cefalexin prophylactic therapy for at least the next three months I have a cystoscopy next week you have to push to get the tests my gp just gave up and rang the hospital on the second call from gp to urology she insisted I was seen ask your gp for an urgent referral to urology nige

Hi Nige, sorry to hear that you’ve had so many infections since starting self catheterisation, but it’s good that you’ve got such a proactive GP. I hope that the cystoscope goes okay next week and that they are able to give you some answers and provide some treatment which will make life better going forward. Yes, Im going to press my GP for a referral now. Thanks for your reply. Best wishes, Debs. 

Hi Debs,It’s good that you will press for a referral.It makes sense to get a cystoscopy to see why you have had so many infections.Best wishes love Jane