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"Late" RT side effects - or not?

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User
Posted 07 Sep 2023 at 10:33

Morning all.  Looking for your thoughts.

I completed prostate radiotherapy in mid-April.  Had the usual short-term side effects that more or less cleared up after 2 weeks.  But in the 2nd week of June, I got some new symptoms that have been with me since - the main ones being the frequent sensation in the bowel that I should strain to pass something & intermittent, but predictable, lower abdominal discomfort.

Got an enquiry message to my oncologist at the end of July & got a message back from him saying my current symptoms are not related to the prostate cancer.  

Visited my GP 10 days ago.  Resulting blood tests have come back clear, but the medication prescribed for IBS (which I have had in the past) is having little effect & it doesn't feel like IBS.

My question is this.  Do you think my oncologist could be wrong (the process of contacting him was a bit like Chinese whispers)?  It feels like there is something in the bowel that has altered the normal passing of gas & stool.  My worry is - if it is not PC-related or IBS, could it be something more sinister?

I will go back to my GP when IBS fybogel runs out in about 10 days.

Many thanks.

Billy

Edited by member 07 Sep 2023 at 15:40  | Reason: Added "RT" to title

User
Posted 07 Sep 2023 at 12:04

They used to say late-onset side effects were those which started 6 months after treatment and persisted. About 5 years ago, that was changed to 3 months.

It probably took my bowel about 9 months to get back to almost normal, except for broccoli which took a year before I could eat again. There was still slightly more mucus for well past a year, and that actually made having a #2 easier than even before treatment (although the "mucus farts" as my oncologist called them had mostly finished by 6 months).

A common issue during and for a while after RT is Tenesmus - a sense you need to do a #2 when actually there's nothing there. Another issue is having no sense if what's waiting to come out is a solid, liquid, or gas, which makes farting very unsafe, caused by damage to nerves in the rectum. These effects usually recover but can take longer than you've had since RT.

Another likely cause is radiation proctitis - a radiation burn to the rectum.

I think it's rather arrogant for your oncologist to dismiss this as prostate cancer related, or more specifically prostate cancer treatment related. That seems most likely in the circumstances, but you can't rule out some other problem and should ask to be checked. You could ask the CNSs to refer you to colorectal to check it's not something more sinister.

User
Posted 26 Oct 2023 at 19:07

Billy, pelvic radiation disease is probably wider spread than we think. I had severe radiation damage to my bladder, urology blamed radiology and radiology blamed urology. I eventually went out of area to get a second opinion. My bowels were iffy for a while but settled down.

I got some advice from the Pelvic radiation disease association.

https://www.prda.org.uk/

Hope you get some answers.

Thanks Chris 

User
Posted 27 Oct 2023 at 14:44

Billy, I completed 37 fractions of RT about ten months ago. Before that I had six cycles of chemo for my locally advanced PC. Initially, I had a bloody discharge, then lots of mucus, and then very loose bowel movements not to mention monumental and often wet farts. It took quite some time but for about the last six weeks all of these symptoms have stopped and I consider that I am in a more or less normal state. I have never suffered from IBS so my circumstances are not quite the same as yours. I hope you get everything sorted. Best wishes.

User
Posted 07 Sep 2023 at 12:02
Could be after effects from your RT, personally I would want to see the oncologist face to face and have him tell me it was unrelated to the treatment! You may have to persevere with the GP and convince them to at least consider it.
User
Posted 26 Oct 2023 at 23:18
Hi Billy, i've had late onset rectal (bleeding) issues which started several months after RT completed... Ive since had 2 sigmoidoscopys and, finally, a colonoscopy arising from my first 2 yearly bowel cancer test - which not surprisingly detected blood in the sample given. I have been diagnosed with radiation proctopathy. It does sound like, if your symptoms persist, a colonoscopy is probably the way forward, sigmoids are a halfway house and my 2nd one really should have been a colonoscopy looking back.... while they are in there they may as well go the whole hog! All the info relating to my treatment to date is in my profile. My CNS has been very helpful in getting me referred for proper investigation.

Hope you get some answers eventually!

Rgds,

Nick

User
Posted 27 Oct 2023 at 10:50

Thanks Nick & all the best to you!

I had 6 months on bicalutamide and then 5 fractions of radiotherapy (with a rectal spacer).  For anyone about to go through same, I should say that, so far, my side effects have been few and entirely liveable-with.  The "worst" was getting up for a pee every half hour throughout the second week after radiotherapy.  Today, 6 months on, I have the symptoms I described earlier as well as breast enlargement and slightly altered sexual function.

I suppose it's still early days, but the whole process to date has been much better than I feared.

For the record, at diagnosis my PSA was 10, Gleason 7 (3+4) and although I was never given a T number, I think it must have been 2c.  In June, PSA was 0.1; earlier this month it was 0.2.

Edited by member 27 Oct 2023 at 14:12  | Reason: Changed "stage" to "T number"

User
Posted 27 Oct 2023 at 15:23

Thank you Hieronymus!  Glad to hear you're more or less back to normal.  I have got off lightly in so many ways & now that my oncologist has agreed that my symptoms could be radiation side-effects, I'm inclined to draw a line under the matter.

All the best.

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User
Posted 07 Sep 2023 at 12:02
Could be after effects from your RT, personally I would want to see the oncologist face to face and have him tell me it was unrelated to the treatment! You may have to persevere with the GP and convince them to at least consider it.
User
Posted 07 Sep 2023 at 12:04

They used to say late-onset side effects were those which started 6 months after treatment and persisted. About 5 years ago, that was changed to 3 months.

It probably took my bowel about 9 months to get back to almost normal, except for broccoli which took a year before I could eat again. There was still slightly more mucus for well past a year, and that actually made having a #2 easier than even before treatment (although the "mucus farts" as my oncologist called them had mostly finished by 6 months).

A common issue during and for a while after RT is Tenesmus - a sense you need to do a #2 when actually there's nothing there. Another issue is having no sense if what's waiting to come out is a solid, liquid, or gas, which makes farting very unsafe, caused by damage to nerves in the rectum. These effects usually recover but can take longer than you've had since RT.

Another likely cause is radiation proctitis - a radiation burn to the rectum.

I think it's rather arrogant for your oncologist to dismiss this as prostate cancer related, or more specifically prostate cancer treatment related. That seems most likely in the circumstances, but you can't rule out some other problem and should ask to be checked. You could ask the CNSs to refer you to colorectal to check it's not something more sinister.

User
Posted 07 Sep 2023 at 13:40

Thank you francij1.  I'm due to have my 2nd follow-up with my oncologist in a month's time - by phone.  I'll see if I can switch it to face to face.  And I will go back to the GP before that if the "IBS" doesn't clear up.  I'm convinced it's not IBS!

Billy

User
Posted 07 Sep 2023 at 13:59

Thank you Andy62.  The tenesmus you describe sounds bang-on to me.  Almost all the time, I feel like I need to go for a #2, but when I strain, nothing happens.  And the other issue is familiar too - not knowing what may be there waiting to come out!

The message from the oncologist did surprise me, but to be fair to him, as I said, the process of contacting him was like a mini game of Chinese whispers.

My GP did talk about a colonoscopy if the "IBS" didn't go away, so we'll see where that leads.

I have been blessed so far with a relatively early diagnosis & the process of getting to where I am today has been very tolerable.  If my latest symptoms are radiotherapy-related, that's fine - they have little impact on quality of life.  It'd just be nice to know, one way or the other!

Billy

 

Edited by member 07 Sep 2023 at 14:58  | Reason: Not specified

User
Posted 26 Oct 2023 at 18:44

An update.  Haven't been back to my GP (after the "IBS" medication made no difference).  But had an appointment with my oncologist a couple of weeks ago & he said my bowel issues could be a result of the radiotherapy.  He was silent on the abdominal discomfort - but this and the tenesmus have eased a little lately.

User
Posted 26 Oct 2023 at 19:07

Billy, pelvic radiation disease is probably wider spread than we think. I had severe radiation damage to my bladder, urology blamed radiology and radiology blamed urology. I eventually went out of area to get a second opinion. My bowels were iffy for a while but settled down.

I got some advice from the Pelvic radiation disease association.

https://www.prda.org.uk/

Hope you get some answers.

Thanks Chris 

User
Posted 26 Oct 2023 at 22:05

Thank you Chris.

User
Posted 26 Oct 2023 at 23:18
Hi Billy, i've had late onset rectal (bleeding) issues which started several months after RT completed... Ive since had 2 sigmoidoscopys and, finally, a colonoscopy arising from my first 2 yearly bowel cancer test - which not surprisingly detected blood in the sample given. I have been diagnosed with radiation proctopathy. It does sound like, if your symptoms persist, a colonoscopy is probably the way forward, sigmoids are a halfway house and my 2nd one really should have been a colonoscopy looking back.... while they are in there they may as well go the whole hog! All the info relating to my treatment to date is in my profile. My CNS has been very helpful in getting me referred for proper investigation.

Hope you get some answers eventually!

Rgds,

Nick

User
Posted 27 Oct 2023 at 10:50

Thanks Nick & all the best to you!

I had 6 months on bicalutamide and then 5 fractions of radiotherapy (with a rectal spacer).  For anyone about to go through same, I should say that, so far, my side effects have been few and entirely liveable-with.  The "worst" was getting up for a pee every half hour throughout the second week after radiotherapy.  Today, 6 months on, I have the symptoms I described earlier as well as breast enlargement and slightly altered sexual function.

I suppose it's still early days, but the whole process to date has been much better than I feared.

For the record, at diagnosis my PSA was 10, Gleason 7 (3+4) and although I was never given a T number, I think it must have been 2c.  In June, PSA was 0.1; earlier this month it was 0.2.

Edited by member 27 Oct 2023 at 14:12  | Reason: Changed "stage" to "T number"

User
Posted 27 Oct 2023 at 14:44

Billy, I completed 37 fractions of RT about ten months ago. Before that I had six cycles of chemo for my locally advanced PC. Initially, I had a bloody discharge, then lots of mucus, and then very loose bowel movements not to mention monumental and often wet farts. It took quite some time but for about the last six weeks all of these symptoms have stopped and I consider that I am in a more or less normal state. I have never suffered from IBS so my circumstances are not quite the same as yours. I hope you get everything sorted. Best wishes.

User
Posted 27 Oct 2023 at 15:23

Thank you Hieronymus!  Glad to hear you're more or less back to normal.  I have got off lightly in so many ways & now that my oncologist has agreed that my symptoms could be radiation side-effects, I'm inclined to draw a line under the matter.

All the best.

 
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