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Your experience of Radiotherapy?

User
Posted 04 Apr 2023 at 17:22

Hi all

Since my diagnosis, 2 weeks ago, I have been leaning towards a RP as my choice of treatment but I think my other health conditions may exclude me from surgery as I may not be fit enough. I have inflammatory arthritis and an 8cm hiatus hernia (stomach travels up through diaphragm and into chest area). 
These conditions have unfortunately affected my fitness levels over the past few years as they have impacted on my physical activity. 

I discovered yesterday that my local hospital has opened a cancer care centre and now have two brand new Linac machines to administer RT treatment. 
Are Linac machines state of the art and do they offer more benefits than the older external beam machines?

If you have had RT how were you with the side effects?

I understand bowel problems are the main side effect, something I am a little concerned about as I already have some form of inflammatory bowel issues that are as yet undiagnosed. (I had a calprotectin test with a result of 547 last year, still waiting for a gastroenterology appointment).

I have a friend that underwent RT at our hospital, using the old external beam machines and though he did have bowel issues he said he actually wasn’t as bad as he first feared. 
We do have a family history of colorectal cancer so this is another concern that I hope to discuss with the consultant. 
I feel really trapped as my medical conditions are looming as a risk whichever way I choose. đŸĨ´

Any experience you can share would be very gratefully received. 
Thank you and take care

Greg. 

User
Posted 04 Apr 2023 at 18:53
Hi Greg, My RT starts tomorrow at Western General in Edinburgh so will share my experiences with you. Having 20 sessions. A friend of mine at the Maggies Support Group I go to had his last (of 20) session today. He has kept in touch and apart from some Cystitis has had no real issues and said the staff were amazing. Like me, you may find the decision on what treatment options are available to you restricted or taken away from you by the experts, depending on the circumstances.
User
Posted 04 Apr 2023 at 18:54
Bowel issues were for me the longest-lasting side-effect of RT. RT side effects typically peak about 10-14 days after treatment ends. Typically radiation irritates the lining of the bowel and increases mucus production (the substance which keeps the bowel slippery and ensures that things keep moving).

I had six and a half weeks of RT (sessions Mon-Fri); 32 sessions in total. For the first month everything was fine in the bowel department, but effects are cumulative and I started to pass transparent green mucus when I was expecting to break wind. This continued on and off, together with very loose bowel movements, for perhaps 2-3 months after RT and then gradually tailed off, but it was probably a year before things stabilised. It was annoying, but not particularly troublesome - if I was going out for the day I took an Imodium tablet and I was fine (and always had a spare pair of undies in my bag, although thankfully I never needed them.

The other side-effect I had was radiation proctitis - a burning sensation inside the back passage. This would last for 2-3 days, then die away, and the interval between attacks became longer and longer. Probably took 18 months to entirely stop.

All in all, I'd class RT side-effects as "mildly inconvenient", but certainly not something which affected my quality of life.

Hope that's of some help to you,

Chris

User
Posted 04 Apr 2023 at 20:38
I had 37 session of RT to prostate, obviously, and lesser strength to pelvic area. As mentioned bowel movements mess you up for a while with one generally having to go when you have to go, not much ability to hold on, for me anyway and, as Cgris says, immodium now&then really helped with the confidence. I did ' soil myself' I think 3-4 times when unexpectedly&suddenly caught short which is a bit degrading tho was on my own having a walk&thankfully the motions were just soft not liquid! I had,so I thought, cleared bowel before went out. As long as I was fairly near toilet things fine. Was tired but clearly HT contributed to that. Did take a while to get back to normal bowel before wise but I did & can't complain.

Peter

User
Posted 04 Apr 2023 at 21:57
Hi Greg - have a read thru my profile when you have time to spare; I'm now circa 18 months post-RT (and into my last circa 7/8 months on HT...)....although most of the side effects have been as expected I'm still having some bowel related issues, although they are not causing me a massive amount of grief, just annoying ! :). Cheers, Nick
User
Posted 05 Apr 2023 at 20:30

Hi Greg,

I can only describe my personal experience, so you'll have to try to assess what statistical relevance it has in relation to your own circumstances and concerns.

I was heading for the normal 20 sessions of EBRT when it became apparent that, after 3 attempts, the radio team could not get a sufficiently clear shot at my prostate , due to the configuration of my internal plumbing. Basically there was a loop of bowel in the firing line, and the onco's view  was that the risks of collateral damage outweighed the benefits.

There was a bit of faffing around while I went back to square one in analysing my options, but to cut a long story short I had a second opinion and got access to a Top Gun MRLInac machine. This offered the opportunity of more accurate targeting, with real time location monitoring, and it was a 5 day rather than a 20 day blast. 

The treatment itself was easy, and in the week after it finished I just had 2 days when I needed to be not far from a loo. Since then, and a year on, I have had no bowel problems at all.

Maybe I was just lucky; but given that bowel damage was certainly on the cards at one stage, I have been well pleased with the outcome. Of course, it may still be early days....

Best of luck with whatever course you embark on.

 

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User
Posted 04 Apr 2023 at 18:53
Hi Greg, My RT starts tomorrow at Western General in Edinburgh so will share my experiences with you. Having 20 sessions. A friend of mine at the Maggies Support Group I go to had his last (of 20) session today. He has kept in touch and apart from some Cystitis has had no real issues and said the staff were amazing. Like me, you may find the decision on what treatment options are available to you restricted or taken away from you by the experts, depending on the circumstances.
User
Posted 04 Apr 2023 at 18:54
Bowel issues were for me the longest-lasting side-effect of RT. RT side effects typically peak about 10-14 days after treatment ends. Typically radiation irritates the lining of the bowel and increases mucus production (the substance which keeps the bowel slippery and ensures that things keep moving).

I had six and a half weeks of RT (sessions Mon-Fri); 32 sessions in total. For the first month everything was fine in the bowel department, but effects are cumulative and I started to pass transparent green mucus when I was expecting to break wind. This continued on and off, together with very loose bowel movements, for perhaps 2-3 months after RT and then gradually tailed off, but it was probably a year before things stabilised. It was annoying, but not particularly troublesome - if I was going out for the day I took an Imodium tablet and I was fine (and always had a spare pair of undies in my bag, although thankfully I never needed them.

The other side-effect I had was radiation proctitis - a burning sensation inside the back passage. This would last for 2-3 days, then die away, and the interval between attacks became longer and longer. Probably took 18 months to entirely stop.

All in all, I'd class RT side-effects as "mildly inconvenient", but certainly not something which affected my quality of life.

Hope that's of some help to you,

Chris

User
Posted 04 Apr 2023 at 19:03

Hi Derek

Thank you, I look forward to hearing your experiences and best of luck for tomorrow and next 19 too :)

Yes I think my treatment may be decided by other factors like my existing conditions. 
Thanks again and take care

Greg. 

User
Posted 04 Apr 2023 at 19:07

Thank you Chris

Thats very informative and given me more to think about and ask in my next appointment. 
I was wondering if Loperamide would be allowed to counter the bowel symptoms as I was advised to take that as required after my colonoscopy. The colonoscopy didn’t find any major issues other than normal amount of diverticulitis so the cause of the massive calprotectin test I had is still unknown. 
I would just love to get one thing sorted once and for all, then move on to the next medical condition … trying to cope with them all at once is like being a one armed juggler on a unicycle :)

Thanks again and take care 

Greg. 

User
Posted 04 Apr 2023 at 20:38
I had 37 session of RT to prostate, obviously, and lesser strength to pelvic area. As mentioned bowel movements mess you up for a while with one generally having to go when you have to go, not much ability to hold on, for me anyway and, as Cgris says, immodium now&then really helped with the confidence. I did ' soil myself' I think 3-4 times when unexpectedly&suddenly caught short which is a bit degrading tho was on my own having a walk&thankfully the motions were just soft not liquid! I had,so I thought, cleared bowel before went out. As long as I was fairly near toilet things fine. Was tired but clearly HT contributed to that. Did take a while to get back to normal bowel before wise but I did & can't complain.

Peter

User
Posted 04 Apr 2023 at 21:03

Thank you Peter

That is my worry about RT. 
Even just the practical issues of getting to treatment when suffering from very upset stomach. 
I suffer from changeable bowels already and it brings quite a bit of anxiety so not sure how I’d cope if it was worsened with RT. 

But if it has to be then it has to be of course. 
Just so many worries going round my head. ☚ī¸

Glad you got through it

Thank you 

Greg. 

User
Posted 04 Apr 2023 at 21:57
Hi Greg - have a read thru my profile when you have time to spare; I'm now circa 18 months post-RT (and into my last circa 7/8 months on HT...)....although most of the side effects have been as expected I'm still having some bowel related issues, although they are not causing me a massive amount of grief, just annoying ! :). Cheers, Nick
User
Posted 04 Apr 2023 at 22:00

Hi Nick

Thank you, I’ll read it now :)

Thank you

Greg. 

User
Posted 04 Apr 2023 at 22:18

Thanks Nick

I’ll read up about proctitis and mention it to the urology consultant as I do have some gastro issues already. I’m actually hoping that my prostate cancer diagnosis will hurry up my gastro investigations as I’ve been waiting for a gastroenterology appointment for nearly 12 months now. 

Take care

Greg. 

User
Posted 05 Apr 2023 at 18:43
Greg yes I should have added that I was fortunate enough not to have any bowel/bladder/health issues prior to PCa treatment and fortunate that where I was treated, Clatterbridge Wirral, was only 10mins away.

Peter

User
Posted 05 Apr 2023 at 19:15

I know it well Peter. 
I lived in Ben Nevis Rd, Tranmere, for a large part of my childhood. 
My mother was treated for breast cancer at Clatterbridge some 40 years ago or so. She worked there for years too. Always was a nice hospital, hope it still is. 😊👍

Spoke with my GP today and he’s chasing my gastroenterology appointment up in case it interferes with cancer treatment. I’m having some terrible stomach and abdominal pains and I had that huge calprotectin test result so he really wants to get to the bottom of what’s going on. Could be pancreas could be gall bladder…could be anything, but hopefully it’s reasonably easy to fix. He said tell urology about it too as they may be able to chase it from inside the hospital system. Fingers crossed 🤞 

cheers

Greg. 

Edited by member 05 Apr 2023 at 19:16  | Reason: Typo

User
Posted 05 Apr 2023 at 20:30

Hi Greg,

I can only describe my personal experience, so you'll have to try to assess what statistical relevance it has in relation to your own circumstances and concerns.

I was heading for the normal 20 sessions of EBRT when it became apparent that, after 3 attempts, the radio team could not get a sufficiently clear shot at my prostate , due to the configuration of my internal plumbing. Basically there was a loop of bowel in the firing line, and the onco's view  was that the risks of collateral damage outweighed the benefits.

There was a bit of faffing around while I went back to square one in analysing my options, but to cut a long story short I had a second opinion and got access to a Top Gun MRLInac machine. This offered the opportunity of more accurate targeting, with real time location monitoring, and it was a 5 day rather than a 20 day blast. 

The treatment itself was easy, and in the week after it finished I just had 2 days when I needed to be not far from a loo. Since then, and a year on, I have had no bowel problems at all.

Maybe I was just lucky; but given that bowel damage was certainly on the cards at one stage, I have been well pleased with the outcome. Of course, it may still be early days....

Best of luck with whatever course you embark on.

 

User
Posted 05 Apr 2023 at 20:40

Hi Olefogey 

Thank you, that’s really interesting. 
My wife was told by a friend of a neighbour that the 2 new TrueBeam linacs in the new cancer centre at our hospital are capable of offering the 5 day course. They were all set on surgery but once they had an hour long chat with the radiologist they decided that they wanted to go the RT route instead. 

I found 5 day thing so hard to believe but you’ve just confirmed that it’s true. That’s really interesting and something near the top of my list of questions for tomorrow’s appointment. 

The new cancer centre is apparently a £35 million investment so I’m really hoping that they do have the latest Linacs. 
Unless of course … I end up going the RP route…I used to be so indecisive but now I’m not so sure…. :)

Thank you and take care

Greg. 

 
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