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Hematuria caused by Telangiectasia of the bladder

User
Posted 13 Sep 2020 at 13:38

I was first diagnosed with prostate cancer in 2008 and underwent quite a lot of radiotherapy at the time. The cancer was cured but in 2016 it returned and had spread to the lymph nodes. This time I had chemo and hormone therapy and am pleased to say that my cancer has responded well and I have been having no cancer treatment since February 2019. Of course, I'm still having 3 monthly blood tests and see my consultant every 6 months.

Then last November, right out of the blue, I peed blood. I was referred for a cystoscopy and was told that the blood vessels in my bladder (Telangiectasia) had been damaged by the radiotherapy, and this had caused the bleeding. I was given no treatment and it was assumed to be a one-off. Then in May 2020, I had another big bleed. This time I had to be catheterised because I had a blockage due to the blood clots and had to spend 3 days in hospital to have my bladder flushed. Again I had a cystoscopy and was given the same verdict. I was prescribed Finasteride because the drug is known to shrink the prostate to help to reduce the pressure on the bladder wall. I was warned that his drug can lead to a lower PSA reading, so I made my oncologist aware that I was taking it. Then last week I had yet another bleed and again had to be catheterised and spent another 3 days in hospital. The doctor has again given me the same diagnosis but has referred me for a CT scan, just to 'dot the i's and cross the 't's', in his words. He mentioned that if the scan comes back clear, they may be able to offer me some other treatment in addition to the Finasteride. I'm not sure at this stage what form this could take.

I'm sure there must be loads of men out there who have experienced this problem after radiotherapy and would be interested to know of your experiences. Because the bleeding occurs without warning, it is difficult to plan one's life and with the added complication of the pandemic, it is playing havoc with my mental health.

User
Posted 13 Sep 2020 at 15:47

Skellyboy

A combination of surgery , self dilations, numerous excursions into the bladder and RT has just about destroyed my bladder. A few months post salvage RT I started passing blood , clots and some strange tissue structures. 

Oncology blamed urology and vice versa. An out of area to prof in Manchester confirmed RT damage and said unfortunately no miracle cure.

As time progressed the bleeding etc reduced and so did the bladder capacity, I can't even fill a sample bottle. I now have a SPC for life.

No one has ever mentioned Telangiectasia. 

Last week I was in a Zoom meeting and based on the above info the opinion was there is no hope of any treatment being successful.

Thanks Chris

Edited by member 13 Sep 2020 at 20:36  | Reason: Spelling

User
Posted 11 Dec 2020 at 13:48

Hi

I’ve started to suffer from this a couple of times over the past few months. I’ve also seen it referred to as radiation cystitis. I agree that the sudden occurrence without warning is alarming.

I have seen that hyperbaric oxygen treatment is a known therapy for this, as it shrinks distended blood vessels and also aids the healing process.

I’m going to start this at a Multiple Sclerosis treatment centre in January, once a week for twenty weeks. It’s self pay as it’s not available on the NHS but at £15 a session it’s not prohibitively expensive.

Hopefully it will help.

All the best to you.

 

 

 

User
Posted 11 Dec 2020 at 14:28

Trevor 

I tried the hyperbaric oxygen treatment, it didn't save my bladder but I think I was too far gone by the time I started in the chamber. I think I paid £12 a session and had two or three a week for a few weeks. I got a discount because of the cancer diagnosis. Very few medics understand pelvic radiation damage. Who has advised on the frequency of your treatment ( you can't name professionals on here) just indicate type of person.

Happy to answer any questions you may have on the treatment.

Thanks Chris

 

Edited by member 11 Dec 2020 at 14:29  | Reason: Not specified

User
Posted 11 Dec 2020 at 16:06

Hi Chris

Sorry to hear it was too late for you. Hopefully I’ll have more luck by starting sooner. The frequency I’ve had suggested is once a week by the MS Centre, from their past experiences. I wonder if doing it too frequently doesn’t give the effects time to take hold between sessions?

Thanks, Trevor

User
Posted 11 Dec 2020 at 18:06

Trevor , there seems to have been some research and trials since I had treatment. One trial suggested 5 days a week, post treatment I did think my 2/3 days was not enough, but the centre was only open 3 days a week.

There does seem to be some good success stories with the treatment.

Thanks Chris

 
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