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Radiotherapy- unexpected side effects

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User
Posted 07 Apr 2017 at 21:39
OH had RRP in Dec 14, suffering incontinence (although not latterly at a huge level) and ED which was slowly improving.

Due to rising psa, he has just undertaken salvage RT (33 fractions) to the prostate bed

With two sessions remaining, he is dog tired, and he is having bowel symptoms- mainly urgency for a few hours in the mornings, and some slight abdomen discomfort. Nothing unexpected, at least by the radiographers.

However, he has noticed an improvement in his continence - although he was only on one level 1 pad when he did very little physical work, this went up to two on heavy days (he's a farmer). In the last week, he's down to liners only, even though previously being tired would almost always make it worse.

He's also started getting random erections. While we've been lucky enough to have a GP who's prescribed cialis daily for two and a half years, he's always needed much physical stimulation to make the old man stand to anything like attention. Now they seem to be happening all on their own.

Is this just coincidence, or are these known side effects? Are they likely to last? Or do you think it's just because three hours out of every day are spent being inactive at hospital and then a further four or five hours in an exhausted heap? But this wouldn't explain the erections....

I'm interested to know if anyone can shed any light on this

User
Posted 08 Apr 2017 at 07:57

No idea , just wanted to say hello as I was thinking about you both the other day !

User
Posted 08 Apr 2017 at 10:21
L

Today's staff had never heard of RT helping ED, will try another crew on Monday.

Thanks CJ very thoughtful of you.

Thanks Chris

User
Posted 09 Apr 2017 at 00:29

RT doesn't always cause ED and if it does, it may be 10 years or more before there is a problem :-)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Apr 2017 at 12:39
The last one was two days ago at 8.00 pm sitting on the sofa.

Sadly, both kids were in and he wasn't feeling very horny. I guess bowel issues will do that to a man. Sex is not at the forefront of s mind at he moment.

I live in hope that at some point he'll be feeling better, bowel symptoms will go, continence will carry on improving, the old man will stand to attention and the kids will be out. All at the same time.

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User
Posted 08 Apr 2017 at 06:34

I can't shed any light Louise but I'm sure somebody else can, so this reply will bump you

We can't control the winds - but we can adjust our sails
User
Posted 08 Apr 2017 at 07:43
L

I expect like me you were also warned that RT could cause ED not improve it.

I have session number three this morning if I remember I will ask my RT guy.

Thanks Chris

User
Posted 08 Apr 2017 at 07:57

No idea , just wanted to say hello as I was thinking about you both the other day !

User
Posted 08 Apr 2017 at 10:21
L

Today's staff had never heard of RT helping ED, will try another crew on Monday.

Thanks CJ very thoughtful of you.

Thanks Chris

User
Posted 08 Apr 2017 at 11:45
Thanks guys.

I'm hoping it's not a trade off. Bowel symptoms considerably worse in the last 24 hours.

User
Posted 08 Apr 2017 at 12:28
Has anyone got any remedies for bowel symptoms from RT? Can I give buscopan and Imodium as normal?

Is he more likely to have long term problems with bowel issues because the symptoms have started while he's still having treatment?

User
Posted 08 Apr 2017 at 19:24

Talk to the RT team on Monday - they may suggest that the diet he was recommended to follow is slightly too extreme for him?

Re the erections - little boys can have involuntary erections when pooing - these are not sexual but reflex responses to stimulation of the bowel. So it is may be possible that your OH's erections are linked to the bowel issues?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Apr 2017 at 22:29
Thanks Lyn.

He's not really changed his diet- just cut out alcohol, coffee, cauliflower, baked beans and cabbage.

He was fine until a week ago when he started to feel gassy and bloated. Then four days ago he started getting urgency, and last night was on the toilet all night. He says it's not diarrhoea, just when he's got to go, he doesn't get much warning. And it feels like he's not emptied. (Sounds like my irritable bowel). It's only night time and early morning then he's fine. Do you know if he's more likely to have long term problems because he's had immediate problems?

I don't know about the bowel thing with the erections- he's been getting them longer than the bowel symptoms. I think that's probably just life being a bit cruel. 'Here, have your erections back so I can take them away from you again once the radiotherapy side effects kick in'. Hopefully, the bowel side effects will wear off and then we can enjoy the erections before they disappear again!

It's a crap disease.

User
Posted 09 Apr 2017 at 00:29

RT doesn't always cause ED and if it does, it may be 10 years or more before there is a problem :-)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Apr 2017 at 08:58
Big boys, well sixty something guys with bits missing also sometimes have involuntary erections or swelling when passing motions, in my experience normally when passing hard motions and at least twenty miles away from the OH.

Thanks Chris

User
Posted 09 Apr 2017 at 12:39
The last one was two days ago at 8.00 pm sitting on the sofa.

Sadly, both kids were in and he wasn't feeling very horny. I guess bowel issues will do that to a man. Sex is not at the forefront of s mind at he moment.

I live in hope that at some point he'll be feeling better, bowel symptoms will go, continence will carry on improving, the old man will stand to attention and the kids will be out. All at the same time.

User
Posted 09 Apr 2017 at 13:12
Originally Posted by: Online Community Member
Big boys, well sixty something guys with bits missing also sometimes have involuntary erections or swelling when passing motions, in my experience normally when passing hard motions and at least twenty miles away from the OH.

Thanks Chris

Funny, gave me a chuckle x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Apr 2017 at 13:13

There is always hope L1969 ;-)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Apr 2017 at 14:48

Love your optimism Louise! make sure the asprins are handy in case of a sudden headache!

E

User
Posted 09 Apr 2017 at 20:58

We, all seem to react differently to the RT I was very loose early mornings with lots of wind, in fact some times it woke me at around 3.30 am and I was on the loo for the rest of the night, at least my bowels were empty in time for the RT, but the diet was the big problem for me.
Drinking lots of water seemed to affect the wind along with the diet.
Wish my ED was a problem but unfortunatly this is the area that I have not had any sort of recovery over. But thought i would not bother with this until I felt all was making a full recovery.
Since the end of my RT as the effet wear off i am starting to have issue with needing to go to the toilet to urinate urgently. Thankfully i have managed to control the urge but sometimes only just. I am still doing my daily excersices as recommended by my Radiologists
We each seem to react differently so good luck to you

User
Posted 10 Apr 2017 at 07:12
Louise

You are well​ in front of me with your RT treatment, do you know how soon your next PSA test will be.

Thanks Chris

User
Posted 11 Apr 2017 at 21:48
Eleanor- yup, if you don't laugh you just cry. And everyone loses the will to live if you cry all the time :)

Happy- yup, this timing sounds similar- 3.30 onwards. He's gassy, but not loose- just urgency. I really think the improvements in continence are because he's been forced not to work as hard.

Chris- we did our last test the day we started treatment, then one half way through. We left today with a form for the next test, which we have to do a week before the next appointment. We don't have this yet, it will turn up in the post. How is yours going?

User
Posted 12 Apr 2017 at 07:48
Louise

If I had seen your post last night I would have said " not very well". Monday evening the RT machine broke down and I had to walk down to the other side of the Hospitial in the cold with a bursting bladder, when I got there I had to release some urine and start again, that was only a minor issue and machine breakdowns happen.

When I got home Monday night and again all day yesterday I have been struggling to pass urine, the end of the penis was very painful passing the small amount of urine and the SPC port was quite sore and slightly bleeding. I was convinced the urethra had closed up as predicted but was surprised how quickly it had happened. Radiologist is going to get appointment with a doctor or lead nurse.

Fast forward into the night and I got up a couple of times, passed urine okay, flow okay, well my normal, no pain.

This morning passing urine okay SPC seems to have settled down.

The only thing I have done differently is cut down my water intake and I took a solifenacin last thing last night. We will see what today brings.

As regards the PSA test my last one was a month ago and I have not been told when my next one is going to be. I did ask if I was having one at the start but was told the one a month ago was good enough.

Thanks Chris

User
Posted 13 Apr 2017 at 22:26
The good thing about radiotherapy is that you're there on a daily basis. They can monitor quite closely. I'd have thought it's unlikely to be due to the radiotherapy this early on?

OH has slept for two days. Barely moved out of his chair. If you knew him, you'd know how bloody unusual this is. Feeling a bit better this evening I think.

Fingers crossed for you. Stay in touch.

L xx

User
Posted 13 Apr 2017 at 23:07
Louise

Instead of getting me an appointment with a Urology consultant I was admitted to a day unit and seen by a doctor who had to keep ringing a uro/onco consultant. Not very impressed and came away no wiser than I was a few days ago.

I have now got a five day break before the next session, we will see how the uretheral retention goes.

Probably too early but not feeling any effects on the tiredness front.

Take care.

Thanks Chris

User
Posted 18 Apr 2017 at 23:38
How's it going chris?
User
Posted 19 Apr 2017 at 13:05
Louise

Getting into the routine of the treatment now, sorted the timing of mini enema, bowel action, bladder empty, and water intake. With the Easter holiday I had a five day break from the RT and the flow seemed to recover slightly, we went away for a few days and I was quite lazy using the super pubic Catheter and bag more than normal. A few hours after yesterday's treatment I was back to slow to zero flow and a swollen penis. A quick fiddle around with a Catheter this morning brought out a bit of debris and initially a better flow, but capacity is very poor.

Got my first Rad review Thursday.

Thanks Chris

 
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