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Brachytherapy experiences

User
Posted 27 Apr 2020 at 16:12

I underwent Brachytherapy for prostate cancer Nov 19 so I am approaching 5 months since the implants and am finding the side effects quite severe , certainly compared to my perception prior to the procedure and was one reason I chose this route . I have suffered quite badly with frequency  and urgency of both bladder and bowel movements along with burning pain and a constant irritation at the tip of my penis . It also seems to have become worse rather than better despite avoiding things like alcohol and spicy food, so I am just wondering how long I am likely to suffer this issue which has had a considerable  impact on lifestyle and sleeping patterns , one positive of Covid - 19 lockdown is never being far from my own toilet . Be good to hear of other peoples experiences with Brachytherapy and any tips to relieve the symptoms.    

User
Posted 27 Apr 2020 at 19:04
Have you been tested for urinary tract infection (properly tested by the GP sending a sample to the hospital, not just doing a dip test in the surgery), thrush and / or cystitis?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Apr 2020 at 23:38

I was HDR brachy, so not quite the same, but the symptoms match, if not the timing. (Mine was in the month after treatment, but my treatment lasted for 20 mins, yours is nearer 6 months.) I also had external beam radiotherapy, but I think most of the side effects (except bowels) came from the HDR brachy.

Depending on the isotope, you are coming to the end of the LDR radiotherapy around now, and the side effects are delayed by some weeks, so I would expect to be diminishing any time now. I did have an infection at tip of penis after the procedure caused by the catheter (which was only in for 24h). Although the infection had gone in a week, it took some months to heal so it wasn't painful anymore, and the pee stream returned to normal shape.

Another possibility - your brain has a body map to map pain on to, so you know where pain is coming from. Some parts of male urology (such as the prostate) are not on this map, and your brain may map such pain onto the penis, particularly the tip, so this can be referred pain and not the actual location.

For bowel movements, I had to switch to a low fibre diet. I still can't eat the amount of fibre I did before, but I can now eat most fruit and veg. For peeing, you might like to lookup bladder retraining.

User
Posted 28 Apr 2020 at 10:07
Hi Lynne & Andy 62 - thanks for your responses .

Lynne - thanks yes I have had proper test for urinary infection and was all clear so it was thought to be radiation cystitis

Andy62 - thanks for sharing your experiences and you make some good points , the low fibre diet being one that I might need to review as I tend to eat quite a plant based diet . thankfully I am a very fit 70 year old so I am able to maintain good levels of exercise between the loo visits .Just hope you are right and that eventually the symptoms will subside .

User
Posted 28 Apr 2020 at 11:59

Hi Willie.

I had Brachytherapy in September 2016 at 70 with PSA 2.19 and Gleeson 3+4=7 and 5 cores of 20 positive.

I was pleased with the operation and had some urgency and was passing water very frequently in the day and a least four times a night but no noticeable bowl problems,I was given a large box of laxatives that i never needed some pain killers and Tamulosen that i think was to relax the lower areas but i stopped taking them after six months as i felt i no longer needed them.

I think lynn may be right and you could have some sort of infection and it might pay you to ring your oncology team for advice.I am 43 months on and think i have been very lucky so far and have no changed my diet in any way and still drink white wine but no beer as i also get Gout. If you click on my avatar you can see my journey so far and if you need any more information or help please ask.

 

Good luck John

User
Posted 29 Apr 2020 at 10:48
thanks John - pleased that you have made such good progress .I have spoken to my oncology team but not very helpful , very matter a fact that I am one of the unlucky ones and somewhat par for the course that potentially will only resolve at the end of the treatment which could be 12 months !!

User
Posted 29 Apr 2020 at 11:40

Hi Willie,

I am sure it will improve soon as i believe the seeds finish at about six months but maybe you where a bit more sensitive to the procedure than me and could have had more seeds put in.I was not told the amount or strength of seeds put in but i never asked the question.

As oncology don't seem interested maybe speak to your doctor about it for some ideas but i do hope it eases for you soon,

Good luck John.

User
Posted 30 Apr 2020 at 10:48
I had permanent seed Brachy in Nov. 2018 and I did suffer a bit from both bowel and urinary problems. I also had a UTI. I think you have to give it a bit more time, things will heal and side effects will slowly fade. I still have frequent peeing, some weird discomfort in the area of my prostate ( almost like itching inside!) but nothing to worry about.

My GP was happy to prescribe various medication to help with the side effects, you could try yours? I also found that diet was ( and still is) important to help regulate my bowels. Drink plenty, I found that plain water is the best, I try to drink at least 1.5 ltrs a day.

I had 74 seeds through 25 holes and a total of 70 Gy ( Greys units) of radiation.

John

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23  <0.01

User
Posted 30 Apr 2020 at 11:19

Hi John(Sparrow)  - thanks for that insight , very helpful and is the sort of thing that assists in my optimism that this is just part of the journey and that given time things will improve . do you mind telling me what major changes you made to your diet ? 

The great news is your latest PSA score which shows the treatment has worked and makes the after effects seem minor by comparison and more bearable for that I am sure .

stay safe

User
Posted 04 May 2020 at 19:53

Dietary changes for me amounted to nothing more than reducing fibre during the period when I had what is called proctitis (bowel radiation sickness!) and increasing things like rice pudding, fish (I don't eat meat) , white bread ( instead of my usual wholemeal) and so on. My bowels were loose to the point I had to clench my buttocks firmly whilst peeing, not an easy feat!

I found yoghourt helped with wind in my bowels and plenty of water helped with cystitis ( non infection, again radiation induced).

Contrary to usual wisdom, beer helped with the cystitis, maybe the increase in fluid? Or maybe it helped me forget :-)

John

PS IT WILL GET BETTER.

Edited by member 04 May 2020 at 19:56  | Reason: Not specified

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23  <0.01

User
Posted 06 May 2020 at 18:30
Hi Sparrow - John thanks again for your info on the problems you encountered and seems like with both the Proctitus and the Cystitis you have suffered what I am experiencing now .My question is how long did it last and how long before you felt any respite ? As far as I can glean from the oncology team it could last the full 12 months life of the implants before any improvement ? currently I am 5 months into it .

rgds

MIKE

User
Posted 06 May 2020 at 19:56
It's hard to remember how long it went on for Mike, it seemed like forever but I guess it gradually tailed off after 7-8-9 months. So stick with it, and please post when you are over the worst to let us know how things have improved for you.

I am sure that my problems did not last the full 12 months, but at the time it felt a lot longer!

Consider the alternatives to brachytherapy even with the side effects, and you may consider that it is still the best choice.

John

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23  <0.01

 
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