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Blood in urine one year after radiotherapy

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User

Posted 24 Feb 2020 at 07:56

Hi, I have sought advice from this forum before when my husband was diagnosed in 2018.

My OH had a radical prostatectomy in April 2018 after his PSA result of 7.4. His Gleeson score was 3+4. The cancer had unfortunately escaped from the prostate but his bone scan was clear.

After a slight elevation in his PSA he had radiotherapy in February 2019.
Now one year on he is experiencing hematuria. Infection has been ruled out by doctor as is kidney stones. We are left with either an inflammation of the urethra or bladder or, bladder cancer.

obviously we are both beside ourselves with worry and just wondered if there are other members that have had a similar issue and if so what treatment was offered. Would be extremely grateful.

He has had clear PSA results since radiotherapy and last test was November last year.

Many thanks

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User

Posted 24 Feb 2020 at 20:21

Sue

A few months post salvage RT I started to pass a large amount of blood clots, debris and blood. Radiation department said it was from surgery , urology department said it was a Radiation problem.

Very rare but I had suffered radiation damage and it has had a detrimental effect on my bladder.

Get it checked out and you may need to keep pestering people.

Any questions please ask.

Thanks Chris

User

Posted 25 Feb 2020 at 10:33

Sue

I will repeat, my situation is very rare, after a few months of passing clots, blood and debris it stopped but by that time my bladder had shrunk.

I have had discussions with a few consultants about bladder removal, my current consultant is in favour of me keeping my SPC which I will have for life.

Again it is rare, I was passing very large amounts of large clots, not the odd clot. Pity we can't post images on here.

Thanks Chris

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User

Posted 24 Feb 2020 at 20:21

Sue

A few months post salvage RT I started to pass a large amount of blood clots, debris and blood. Radiation department said it was from surgery , urology department said it was a Radiation problem.

Very rare but I had suffered radiation damage and it has had a detrimental effect on my bladder.

Get it checked out and you may need to keep pestering people.

Any questions please ask.

Thanks Chris

User

Posted 24 Feb 2020 at 20:59

Thanks Chris. What tests did they do to diagnose that and did they give you any treatment? My husband is having an MRI next week to rule out kidney stones

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User

Posted 24 Feb 2020 at 21:14

Sue

They didn't do any tests, that is one of the problems with pelvic radiation damage very few people understand it. I finished up going out of area to see one of the country's top urologists. Following a look inside the bladder it was him who said, " sorry no miracle cures". As already said it is very rare. How much blood and or clots is he passing and how often.

The RT late effects team were very sympathetic but hadn't got any answers or solutions.

No treatment was given there was talk of a few options but there were all dismissed as a waste of time. I did have quite a few sessions in a hyperbaric oxygen chamber, but by then it was too late.

Thanks Chris

Edited by member 24 Feb 2020 at 21:17 | Reason: Last paragraph added

User

Posted 25 Feb 2020 at 07:42

Thanks Chris. Sorry, last question, do you just manage it yourself then? Obviously it’s not great if it’s damage through radiation but we are worried it could have spread to his bladder.
It’s an ultrasound he’s having not an MRI.

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User

Posted 25 Feb 2020 at 10:33

Sue

I will repeat, my situation is very rare, after a few months of passing clots, blood and debris it stopped but by that time my bladder had shrunk.

I have had discussions with a few consultants about bladder removal, my current consultant is in favour of me keeping my SPC which I will have for life.

Again it is rare, I was passing very large amounts of large clots, not the odd clot. Pity we can't post images on here.

Thanks Chris

User

Posted 30 Mar 2020 at 21:52

Sue,

I have the same problem, I've been having hematuria for over a year now. I've had a prostatectomy, radiotherapy and surgery for urethral strictures. I'm waiting to see the doctor and then a specialist again, but due to the coronavirus crisis I need to try to manage it for the present.

Has your husband been checked for urethral strictures? I submitted a post on urethral strictures a while back due the hematuria I'm having.

Like yourselves, because I don't know what the cause is, I keep thinking it might be something sinister.

Best Regards

User

Posted 31 Mar 2020 at 09:18

Hi Martin

My husband has now had a cystoscopy which has revealed “three sinister lesions” in his bladder. They were scraped back and biopsies taken but no results yet and that was two weeks ago. Doubt he’ll get results any time soon due to current situation. I’m worried he won’t get the treatment for a while which could mean that if it is cancer, it will spread.

I will check out your post on urethral strictures. Since having the cystoscopy, and having a catheter in for 9 days, the hematuria seems to have gone. The original consultant he saw thought the hematuria was caused by radiation damage but when they further investigated, the lesions were found.
I hope you manage to get seen soon.

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User

Posted 26 Apr 2020 at 08:09

Hi Chris

my husband has had the results from his cystoscopy and he has a urethral stricture. After his cystoscopy he still has pain urinating, pain in his perineum and the worst symptom for him is the urgent need to urinate.

He was told he had an infection, given anti biotics which didn’t work, followed by a different antibiotic which again didn’t work. A sample of urine was sent off for culture but no significant infection found. He is now on Ciprofloaxin and no change after 6 days.

When he was discharged from hospital the urologist said he should have another cystoscopy in 6 months but has effectively discharged him for now.

Can I ask you what operation you had for your strictures? My husband is getting really down about this and this morning has said he doesn’t want to get up because then it all starts.

We just don’t know which way to turn and any advice you could give would be much appreciated.

Thanks.

Sue

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User

Posted 26 Apr 2020 at 10:20

Sue

I had about thirteen dilations, all but three were under GA. A dilation involves inserting " cook medical s dilators" into the penis and through the Urethra and stricture to stretch the scar tissue or whatever is causing the partial blockage. They start with a small one and then progressively use a bigger one. I have had one full dilation without any pain relief, not in my top ten list of favourite things but I it was tolerable.

On two occasions the dilation also included a small incision into the scar tissue. On nearly all occasions it did compromise the continence but only for a short while.

Some of the guys on here only needed a couple of procedures. The perineum pain can be an infection but will need the right anti biotics and sometimes a longer course.

Long term Urethral reconstruction may be the answer but that will usually require a bladder capacity above 200/300 ml. I was told there was only one guy in the UK who should do that op. I will pm you a name but the current situation is not going to help.

If you have any more questions feel free to ask.

Thanks Chris

User

Posted 26 Apr 2020 at 13:43

Thanks very much Chris. I guess we need to give the Cipro at least another week to see if symptoms improve. This seems quite a common problem and difficult to treat.

Thanks

Sue

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