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Deciding on Radiotherapy or not

User
Posted 11 Jun 2018 at 11:30

I am on week 7 of hormone therapy and apart from hot flushes and loss of libido, im doing OK

The thought of what damage my planned radiotherapy can to to surrounding tissue scares me

I have read that rectal damage is common and urinary and faecal incontinence as well

It makes me wonder whether to proceed with it.I can stay on hormone therapy and have regular PSA tests

I an aware of the possibility of cancer cells becoming hormone resistant

But quality of life for for an active sportsman like me could be ruined by the common side effects.

I see the risk of not having the treatment, but a few extra years of life with no sport is unthinkable for me, I would rather die a bit earlier having enjoyed my self to the end and before you ask, my wife and kids have been consulted

 

User
Posted 11 Jun 2018 at 17:20
For me circa 13 years on no RT regrets at all. HT caused more hassle than RT by far. You have the advantage of more focussed RT than in my time. Check my profile.

Ray

User
Posted 11 Jun 2018 at 12:33

If you are on a curative path I think it would be worth it.

You could ask about the biodegradable rectal spacers now approved for use during radiotherapy.

These reduce the amount of radiation damage to the rectum.

Best wishes,

Ian

 

User
Posted 11 Jun 2018 at 14:01
I finished my 37 RT sessions last week. It ended up lasting 9 weeks and 3 days thanks to 3 days breakdown (machine not me!), one day planned maintenance and 3 bank holidays. I have suffered diarrhea from after the 2nd week onwards and I believe I have radiation cyctitis. If this treatment works then it is worth it. I'm hoping bad symptoms will start to ease soon although I was told they could get worse for up to 2 weeks after treament. I have the bonus of not suffering any fatigue (even if up ~8 times a night).

I was told I was just unlucky with my side effects - you may avoid the fatigue issues too if your fit and otherwise healthy.

Maybe you should speak to nurses. They absolutely assured me that RT is just as successful as RP.......

Richard

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User
Posted 11 Jun 2018 at 11:53
Yes but are you on a curative route or not ?? If you could be cured then I guess it’s worth a shot ?? Can’t see if you had bone spread ? I had my prostate removed but have flatly refused RT three times as I don’t want further damage down there and they admit I probably have distant Mets. I’m totally quality of life too , but I think many many men have got through RT with few probs. Good luck

If life gives you lemons , then make lemonade

User
Posted 11 Jun 2018 at 11:58

Hi Chris, thanks for taking the time to respond.

yes, although I’m Gleason 4:5 I’m T2c, so I’m on curative treatment. My bone scan, CT and 3 detailed MRI found no mets.

but all articles I have read say rectal and urethra damage is commonplace

i will wait see what other responses I get, I have 10 days before making a decision

 

User
Posted 11 Jun 2018 at 12:24
If it’s cure path then it seems worthwhile. I was told continence probs are short lived after RT unless you have existing probs. ED may or may not happen over a longer period. Fatigue should pass after treatment. I wish you well anyway

If life gives you lemons , then make lemonade

User
Posted 11 Jun 2018 at 12:33

If you are on a curative path I think it would be worth it.

You could ask about the biodegradable rectal spacers now approved for use during radiotherapy.

These reduce the amount of radiation damage to the rectum.

Best wishes,

Ian

 

User
Posted 11 Jun 2018 at 13:26

I read about those Ian, thanks for the tip. Are they approved by NICE now?

i know they passed clinical trials in USA 

 

footnote. Found the notes- I’m going to ask my oncologist for this procedure, I know it’s a trans Perennial op, so my be a general

Edited by member 11 Jun 2018 at 13:29  | Reason: Not specified

User
Posted 11 Jun 2018 at 13:34
I'm Gleeson 4:5 as well. I've had RP, RT and HT. The RP was fairly straight forward, the HT and RT was hard work (for me). I know what you mean about the sports life - I'm a compulsive rock climber, and the last year has been hard work. All treatment now finished, and I'm writing this hurting all over due to spending the weekend climbing. It's a good hurt! Do I regret having the RT? No, I was on a curative path. Time will tell if it worked or not, but so far it's worthwhile. And hasn't stopped me from carrying on with sports. We're all different, my thinking was go for all the treatment and hope for a cure. Aged 54 with a 10yr old child, it was worth the punt. Any lasting hindrances to a sporting life I think I can put down to the RP at the moment.
User
Posted 11 Jun 2018 at 13:52

I had just the same qualms as you, but decided on going ahead with the RT. I'm now close to the end of the 37 sessions and so far, so good. Not much tiredness - I'm cycling and hiking more or less as normal, and only minor side-effects to bladder and bowels. Everyone reacts differently to the RT but, looking around the waiting room at the hospital and talking to the other guys there, most men seem to get through it OK. I think I made the right decision to have the RT.

User
Posted 11 Jun 2018 at 14:01
I finished my 37 RT sessions last week. It ended up lasting 9 weeks and 3 days thanks to 3 days breakdown (machine not me!), one day planned maintenance and 3 bank holidays. I have suffered diarrhea from after the 2nd week onwards and I believe I have radiation cyctitis. If this treatment works then it is worth it. I'm hoping bad symptoms will start to ease soon although I was told they could get worse for up to 2 weeks after treament. I have the bonus of not suffering any fatigue (even if up ~8 times a night).

I was told I was just unlucky with my side effects - you may avoid the fatigue issues too if your fit and otherwise healthy.

Maybe you should speak to nurses. They absolutely assured me that RT is just as successful as RP.......

Richard

User
Posted 11 Jun 2018 at 16:56

NICE seem to have approved their use so must think they reduce toxicity from pelvic radiotherapy.

Hopefully someone with more experience will answer too.

Nice guidance on rectal spacers

 

Best wishes,

 

Ian

User
Posted 11 Jun 2018 at 17:20
For me circa 13 years on no RT regrets at all. HT caused more hassle than RT by far. You have the advantage of more focussed RT than in my time. Check my profile.

Ray

 
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