Dealing with treatment side effects.

User

Posted 14 Jul 2022 at 16:37

My prostate cancer was detected early (Gleeson 7) 6 years ago and I had HiFu which had minimal side effects and have had 6 years of happy remission. My PSA increased quickly Sept 21 an MRI showed re-occurrance and confirmed by a biopsy (Gleeson 8) but still confined within the prostate. 2 years of HT started in Nov 21. Then 37 sessions of RT at UCLH London in Feb/April. (The UCLH radiographers were absolutely brilliant)

HT has been quite debilitating - weakness from muscle loss, increase in belly fat and hot flushes. RT was largely straightforward just looser bowel. As soon as it finished I started going to the gym to re-build my muscles and try and loose the belly fat.

However, in mid May (4 weeks after RT finished), the problems started. I am having to pee very frequently (20x per day) and painfully, starting every 15/30mins in the morning when I only pass small volumes (10-50ml). It does get a bit better later on in the day and into the evening when the frequency extends, volume increases and the pain is a bit less. Overnight I am usually up about 4 times with only minor pain. There has been the occasional day it the 2 months when it has not been so bad. We had 2 holidays planned for this summer, the first since the pandemic started, but had to cancel both because travelling was too risky.

The UCLH team have been very sympathetic. The urology team have not been very helpful, which seems to imply nothing can be done, but neither can they give me any indication of if and when things might improve. The only outings I feel comfortable in undertaking are to friends houses within 30mins travelling time where I know a loo is readily available.

Tamsulosin was prescribed many years ago but made me very dizzy, so had to stop. I am thinking I might have to try it again. I have tried Cranberry juice for a couple of weeks, but there was no discernible improvement, but I shall try again.

I have learnt to cope with the pain, but it is the frequency that is limiting me the most. Is there anything I can do? I have been told I should not cut down on fluid intake (about 2l a day).

Dave

User

Posted 14 Jul 2022 at 17:50

Dave, hope you are not in the same situation I was, I had salvage RT 3 years after surgery. Within a few months I was passing large amounts of debris , strange tissue formations and lots of blood clots.

After going out of area I was diagnosed with severe radiation cystitis, my bladder capacity is now around 20 ml and I have a permanent suprapubic catheter. Severe radiation cystitis is quite rare but it does mean the early signs are not always spotted or understood.

Thanks Chris

Edited by member 14 Jul 2022 at 17:51 | Reason: Spelling

User

Posted 14 Jul 2022 at 20:23

The symptoms you describe are identical to the ones I had which then lead to the cancer diagnosis. In my case the bladder was fine but the enlarged prostate meant I couldn't empty it so I could only piss out about 20ml at a time, though it turns out I was retaining nearly a litre.

Has anyone done a bladder scan to determine whether it is a very small bladder capacity as Chris describes or a large capacity but with only a very small outflow?

Dave

User

Posted 14 Jul 2022 at 20:41

I would definitely recommend giving Tamsulosin a go. I was prescribed it prior to biopsy last November It's been a life saver both then and now as I go through RT.

User

Posted 15 Jul 2022 at 01:54

Dave, elementary I know, but have you had a UTI culture test done? A UTI can have the symptoms you describe and be persistent and difficult to overcome.

Barry

User

Posted 15 Jul 2022 at 09:12

Thanks for all the comments and suggestions.

I have had 3 UTI culture tests all completely clear.

At times I can pass 200-300ml usually during the evening and overnight. It is early morning and during the day that the volumes are low, frequent and painful. UCLH did a bladder scan about 5 weeks ago and said everything looked normal.

Dave

User

Posted 15 Jul 2022 at 12:37

Dave

Beside pre PCa I've had peeing frequency issues for 17 plus years since treatment RT/HT. My advice is whatever it takes get it sorted asap.

Pills: Have you tried Alfuzosin. For me not a great difference between Tamsulin and previously Flomax but you?

Driving: just having a pee bottle in the car might give you the confidence to have longer journeys.

As regards keep drinking, I've only recently changed from nigh on 2 litres of mainly water a day to going on colour of urine. That's reduced bad nights of plus 10 times to almost zero. Normal nights of 3 - 5 times is down to 2 - 3 times with the bonus when I wake can sometimes hold not getting up for an hour rather than what was immediately.

Avoid drinking a large amount in one go. For me a maximum of 400ml in an hour seems to help.

Watch you don't get constipated as if it will certainly increase night time loo visits.

Hope that helps some.

Ray

Edited by member 15 Jul 2022 at 12:43 | Reason: Not specified

User

Posted 23 Jul 2022 at 18:37

Very surprised urology haven't suggested a cystoscopy. My problems urinating (pain, not emptying fully) started a few months after RT finished. Persevered with it then started passing blood so was hauled in for a cystoscopy. They found a stricture in the urethra below my prostate was causing the problems.

They dilated it, which actually caused me quite a lot of pain for several weeks after. However, it pushed me in to getting into cranberry juice big time. Nothing fancy just Ocean Spray sugar free. The pain gradually passed until it disappeared completely last August and hasn't returned. My frequency returned to normal too. I'm still drinking the cranberry every day and wouldn't be without it.

Maybe tentatively suggest a cystoscopy? I know it can be difficult because medics don't like thinking patients are telling them their job. But nothing ventured nothing gained. Good luck

Edited by member 23 Jul 2022 at 18:38 | Reason: Not specified

User

Posted 23 Jul 2022 at 21:43

Thank you Ray and Bean121 for the further comments and suggestions. I am due to have a flow test and retention scan in a couple of weeks and then see another consultant straight afterwards. (I want to try and persuade them to do a scan both before and after if possible) If there are no positive plans going forward I will suggest a cystoscopy.

I am back on the Cranberry again, how much is it suggested that is taken per day? and whether in one go or several? At the moment I am taking about 200ml once a day. As far as water is concerned I am drinking about 250ml at a time spread out over the day giving me between 2l and 2.5l a day total intake per day.

What I find hard to understand is the fact that the volume / frequency / pain is so variable. Overnight (3 or 4 times) and the first pee of the morning there is virtually no pain and the volume is 200ml - 350ml at a time. Before getting up I usually have two 200ml drinks about 15mins apart. Once I have got up there is then the dramatic change where the volume drops to 10ml -50ml and the pain is severe, and the stream is more of a dribble. Frequency can be anything from 5 mins to 45/60mins. During the afternoon the situation changes again with the frequency increasing, the volume increasing and the pain decreasing. If I am lucky this starts after lunch, sometimes it doesn't happen until late afternoon. This leads onto the evening which is much more tolerable, and then onto the pain free night.

Does being horizontal overnight play a part? I am a naturally active person, is it this that causes the problem during the morning, and then the activity reduces during the late afternoon and evening giving rise the the improvement? If there was a stricture I would expect the problem to be more constant?

This started just over 8 weeks ago (4 weeks after the RT finished) the symptoms have stayed pretty constant and there is no sign of any gradual improvement. There have been a couple of isolated days where the morning has not been so bad and the afternoon improvement started more like midday.

Thanks again for all the help and suggestions.

Dave

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