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Tips on how to minimise the side effects of RT please

User
Posted 11 May 2022 at 23:05

Hi  all,


My father has been diagnosed with advanced prostate cancer T4N0M0 Gleason 7, he is due his RT planning scan in a few weeks and plan to start RT mid June for 6.5 weeks. 


We are obviously concerned about the side effects and hope he can tolerate it. I have been told by one doctor to have lots of water before the RT to help reduce side effects. But how much is 'lots of water' , does it vary with individuals on how much you need to drink? 


Also is there anything he can do to help reduce the risk of side effects.


Thank you in advanced! 

User
Posted 19 May 2022 at 08:07

That's what I had to do also had 37 sessions off radiotherapy found it tolerable one year on psa now 0.01 from 24.9  generally ok had a few problems had abscess in treatment area a month ago that's about sorted and a few bowel problems that are improving over time the hormone therapy decapeptyl was ok for 12 months but had a few problems with bone ache and weight gain try to exercise more    13 months into 24 months off hormone therapy be glad to see the back off it and see how we go from there generally ok working as I did all the way through radiotherapy good luck with your treatment gaz πŸ‘

User
Posted 19 May 2022 at 11:55

A few things from my experience.


You have a tendency to become less continent during the treatment and for the month afterwards. I switched to wearing disposable pants half way through. I never did have an accident, but knowing it didn't matter if I did was good security.


Most people get a change in bowel habits. Usually, this is looser stools, wind, and mucus (mucus farts as my oncologist puts it), going more often, and also losing the ability to sense if a fart is safe or not. For the looser stools, it may be necessary to switch to a low or very low fibre diet, but don't change diet until/unless it becomes necessary. I had to stop eating fruit and veg and anything with brown flour, brown rice, or seeds. There are a few exceptions, peeled apples, pears, bananas, potatoes are low fibre and OK. This slowly improved from a month after the radiotherapy, and was just about back to normal 5 months later, except for broccoli which took a year before I could eat it again. Another effect is a false sense you need to do a #2 when there's actually nothing there to do.


In a small number of cases, the opposite happens and people get constipation, in which case you need to eat more fibre.


Pelvic floor exercises are really important, and I think I only managed to stay continent because I'd been doing them. He can start doing those now.


One other thing, at some point, you may lose the ability to do just #1's as distinct from #2's, i.e. you may find you managed to s*** yourself while standing to pee. This is another temporary effect which recovers a month or so after treatment, but if this happens, it's best to always sit down to pee until it recovers.

User
Posted 21 May 2022 at 00:22
Some really good responses above:
- most but not all men are asked to drink water and maintain a full bladder during RT - some oncos prefer the bladder to be empty
- not all hospitals require all men to have enemas or mini-enemas - some hospitals prefer the man to get his bowel empty through self-management / diet and only give enemas if the man isn't getting it right
- some men are asked to go onto a high fibre diet, others are asked to go on a low fibre diet - your hospital RT team will advise what they want Dad to do
- almost all hospitals advise patients to avoid alcohol during RT along with anything that produces gas - fizzy drinks, for example. Gas is the enemy
- skin around the midriff can get sore, similar to sunburn, particularly if Dad is fair skinned. Avoid scented showergels and stick with mild or PH zero products such as baby wash
- once RT is finished, his skin may be very sensitive to sunlight - if planning a holiday, he should wear sun cream of factor 50+ and keep his t-shirt on if possible.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Jun 2022 at 17:30
A tight feeling while urinating is a common side effect of RT. The radiation make the prostate swell up and it presses against the urethra. I was prescribed Tamsulosin for it and it completely solved the problem for me.

All the best,

Chris
User
Posted 12 May 2022 at 00:09

I have not heard "lots of water". I do know some hospitals want the bladder to have a known amount of urine in it. How full or empty bladder and bowels are can have an effect on whether the radiation aimed at the prostate will damage the bowel. You really need guidance from the hospital as to what diet they recommend. 


I don't think he will suffer too badly from the radiation. I had minimal side effects.

Dave

User
Posted 12 May 2022 at 00:23

Hospitals generally let the patient know how much water to drink. Suggest your Dad asks at planning meeting if this is not mentioned.


Some men find they are too loose while others like me were constipated during RT. Suggest Dad also asks about this at planning meeting so diet can be adjusted accordingly. Dad may be a little sore so also ask about ointment to apply gently and sparingly to nether region. Dad should avoid the sun as much as possible but exercise to keep fit even though he may feel premature fatigue. make a note of location of toilets as greatly increased urgency and frequency often experienced. Most men tolerate RT well. It's rather like having a longer x-ray directed from a number of angles. Report the unlikely event of nausea to radiologist. Try not to miss a session or fraction as these are called. An absorbent pad or two and a spare pair of pants might prove useful!.

Edited by member 19 May 2022 at 23:20  | Reason: Not specified

Barry
User
Posted 12 May 2022 at 10:57

Kelso , not all hospitals have the same protocol, my hospital is empty bowel and urine in the bladder. My routine was a mini enema three hours before the appointment. On arrival at the RT department I asked if they were running to time, if they were I would empty my bladder and drink three plastic cups of water as advised by the staff, I drank the water around twenty minutes before my appointment. Some nurses have told me to drink the water in a slow controlled manner not to drink it all at once.


The main objective is to have the organs in the position for each session.


The "plenty of water" probably comes about from how water passes through the body. I now  have a permanent catheter so tend to notice how much and when urine is produced. Imagine the body is a sponge, if you pour water into a dry sponge it gets soaked up, if you pour water into a wet sponge it comes out. I have numerous medical occasions where I need or needed to be well hydrated, I find my body reacts like the sponge, if I am hydrated urine is quickly produced, if dehydrated it takes longer to produce urine. Of course we are all different.


Unfortunately I am in the five percent that has an adverse reaction to salvage RT, in hindsight that could have been down to lack of fluid in the bladder.


Hope all goes well.


Thanks Chris


 


 


 

Edited by member 12 May 2022 at 11:00  | Reason: Not specified

User
Posted 12 May 2022 at 20:37
All good info , I will mention again most important you know where toilets are even when travelling from the hospital ,carry a pee bottle in car ? , get a toilet card , wear boxer shorts and joggers speed sometimes needed . As mentioned my hospital Southampton general had empty bowel , full bladder situation needed before the machine does it’s work , six and half weeks would be 33 fractions ? Let me assure you that will go quick . I had 20 , and side effects kick in starting the third week , treatment quite tolerable but it’s was the final week had big trouble peeing and in fact the following week I had to go to A/E to have a catheter fitted which I had for 3wks had it was fine . Best of luck
User
Posted 12 May 2022 at 21:45

Not everyone, can take Tamulosin though - I found it gave me the symptoms of a bad cold permanently. I found low dose Tadalafil worked well instead & assisted with ED problems too.



For RT, two things are needed - the bladder with about the same amount in it, & very little or no Flatulence - that is why they say you should be on a non "Windy" diet. Avoid Onions etc. The whole idea, is so the Prostate is in a predicted place within your body. Important that you don't move & before all this, get your weight down - the more fat & blubber you have, the more difficult for the "Target" to stay in the same place.
They should do an xray scan at each treatment, BEFORE the actual radio therapy is done. You will know this, as the machine circles round you WITHOUT it's deep hum, they can then move what your laying on to correct any errors.
the second time, the machine circles you (With the deep hum), is the actual Radiation being applied.
This is how they operated in Addenbrooks, Cambridge, & it worked for me anyway. I did have a small amount of Proctitus later, but this was treated OK. None of it is very pleasant, but it is far preferable to an early death. I would not be writing this now, if I had not had it done.



I know after each session, I was very pleased to get to the Loo !! as soon as possible.
But I will say, they were great in Cambridge & folks came from miles away for their treatment.

Edited by member 12 May 2022 at 21:51  | Reason: Not specified

User
Posted 19 May 2022 at 10:08

Hi Kelso, just back from treatment all went ok πŸ‘


They did say I need to drink an extra cup of water as I was a bit low... There is no hiding place πŸ˜‚


What I forgot to mention earlier that throughout the day you also need to drink 2 to 2.5 litres of water/ squash as well as what the require for the treatment. The reason is to lift the bladder away from the prostate out of harms way. The machines are very accurate and you may be given 3 tattoos (tiny dots) and even gold seed implants which you get to keepπŸ˜‚


It all helps with the alignment.


I am also on hormone therapy for next 2 years (started in Jan) and the main side effects for me is hot flushes... which are entirely manageable and always gets comments from the ladies. HT can give you weariness a bit and I think RT might in the latter stages. I am trying to watch my weight and tbh the whole thing is a balancing act!


Once you get into a routine and take control of your body, it will be ok.


So hand yourself over to the team and God and try to do all that they ask.


It really helps to have a positive mindset and also use mechanisms like the forum to keep you on the right side of things.


 


With every blessing 


Ian

User
Posted 29 Jun 2022 at 11:48

Kelso, I already had a stricture from surgery, before salvage RT. I had a suprapubic catheter fitted before SRT in case the stricture closed up. I don't know what percentage of Guys get  strictures with primary RT but it is a known side effect. 


If he ever gets to the point where he fails to pass urine get medical help straight away. Retention is unpleasant and potentially harmful. Speak to his medical team and see what the emergency route would be. My consultant had a note put into my notes that gave me open access to our urology ward. 


A catheter is an option if he really needs it.


Thanks Chris 


 


 

User
Posted 29 Jun 2022 at 12:48

Kelso, I just finished my 37 fractions yesterday and rang the bell! The last couple of weeks though things got really tight and a bit painful. I was prescribed Tamsulosin which has gone some way to ease things but it is still tough and I am hoping and praying each day will get a little easier. I was tested twice for infection along the way but both times were negative.


It seems it to be a common occurrence but I don't like being a statistic, I just want it to ease up!


I do hope your dad can get some resolution, as time goes by it also affects your sleeping.


Wishing him every blessing.


Snowwy

User
Posted 29 Jun 2022 at 19:40

Originally Posted by: Online Community Member
I don't know what percentage of Guys get strictures with primary RT but it is a known side effect.


About 8% get a stricture, but it's usually a late onset side effect (typically 6 months or more later), not during the treatment.


Flow issue during treatment is much more likely to be caused by swelling. Tamsulosin (or another Alpha-blocker) would be good to try, or failing that, a catheter.

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User
Posted 12 May 2022 at 00:09

I have not heard "lots of water". I do know some hospitals want the bladder to have a known amount of urine in it. How full or empty bladder and bowels are can have an effect on whether the radiation aimed at the prostate will damage the bowel. You really need guidance from the hospital as to what diet they recommend. 


I don't think he will suffer too badly from the radiation. I had minimal side effects.

Dave

User
Posted 12 May 2022 at 00:23

Hospitals generally let the patient know how much water to drink. Suggest your Dad asks at planning meeting if this is not mentioned.


Some men find they are too loose while others like me were constipated during RT. Suggest Dad also asks about this at planning meeting so diet can be adjusted accordingly. Dad may be a little sore so also ask about ointment to apply gently and sparingly to nether region. Dad should avoid the sun as much as possible but exercise to keep fit even though he may feel premature fatigue. make a note of location of toilets as greatly increased urgency and frequency often experienced. Most men tolerate RT well. It's rather like having a longer x-ray directed from a number of angles. Report the unlikely event of nausea to radiologist. Try not to miss a session or fraction as these are called. An absorbent pad or two and a spare pair of pants might prove useful!.

Edited by member 19 May 2022 at 23:20  | Reason: Not specified

Barry
User
Posted 12 May 2022 at 10:57

Kelso , not all hospitals have the same protocol, my hospital is empty bowel and urine in the bladder. My routine was a mini enema three hours before the appointment. On arrival at the RT department I asked if they were running to time, if they were I would empty my bladder and drink three plastic cups of water as advised by the staff, I drank the water around twenty minutes before my appointment. Some nurses have told me to drink the water in a slow controlled manner not to drink it all at once.


The main objective is to have the organs in the position for each session.


The "plenty of water" probably comes about from how water passes through the body. I now  have a permanent catheter so tend to notice how much and when urine is produced. Imagine the body is a sponge, if you pour water into a dry sponge it gets soaked up, if you pour water into a wet sponge it comes out. I have numerous medical occasions where I need or needed to be well hydrated, I find my body reacts like the sponge, if I am hydrated urine is quickly produced, if dehydrated it takes longer to produce urine. Of course we are all different.


Unfortunately I am in the five percent that has an adverse reaction to salvage RT, in hindsight that could have been down to lack of fluid in the bladder.


Hope all goes well.


Thanks Chris


 


 


 

Edited by member 12 May 2022 at 11:00  | Reason: Not specified

User
Posted 12 May 2022 at 20:37
All good info , I will mention again most important you know where toilets are even when travelling from the hospital ,carry a pee bottle in car ? , get a toilet card , wear boxer shorts and joggers speed sometimes needed . As mentioned my hospital Southampton general had empty bowel , full bladder situation needed before the machine does it’s work , six and half weeks would be 33 fractions ? Let me assure you that will go quick . I had 20 , and side effects kick in starting the third week , treatment quite tolerable but it’s was the final week had big trouble peeing and in fact the following week I had to go to A/E to have a catheter fitted which I had for 3wks had it was fine . Best of luck
User
Posted 12 May 2022 at 21:16

Originally Posted by: Online Community Member
the final week had big trouble peeing and in fact the following week I had to go to A/E to have a catheter fitted which I had for 3wks had it was fine .


Did they try prescribing Tamsulosin? That fixed all my "flow" issues. It's the one permanent side-effect of RT that I have. One Tamsulosin tablet each morning, though, and everything's fine. If I forget to take the tablet by the evening I can really notice the difference.


Cheers,


Chris


 

User
Posted 12 May 2022 at 21:45

Not everyone, can take Tamulosin though - I found it gave me the symptoms of a bad cold permanently. I found low dose Tadalafil worked well instead & assisted with ED problems too.



For RT, two things are needed - the bladder with about the same amount in it, & very little or no Flatulence - that is why they say you should be on a non "Windy" diet. Avoid Onions etc. The whole idea, is so the Prostate is in a predicted place within your body. Important that you don't move & before all this, get your weight down - the more fat & blubber you have, the more difficult for the "Target" to stay in the same place.
They should do an xray scan at each treatment, BEFORE the actual radio therapy is done. You will know this, as the machine circles round you WITHOUT it's deep hum, they can then move what your laying on to correct any errors.
the second time, the machine circles you (With the deep hum), is the actual Radiation being applied.
This is how they operated in Addenbrooks, Cambridge, & it worked for me anyway. I did have a small amount of Proctitus later, but this was treated OK. None of it is very pleasant, but it is far preferable to an early death. I would not be writing this now, if I had not had it done.



I know after each session, I was very pleased to get to the Loo !! as soon as possible.
But I will say, they were great in Cambridge & folks came from miles away for their treatment.

Edited by member 12 May 2022 at 21:51  | Reason: Not specified

User
Posted 12 May 2022 at 23:30

I had already been on Tamsulosin foy many years before my RT and for the time of my RT it didn't help. The reactions and response of men to drugs and treatment can differ so much. Prepare for worse response but be happy because these are generally not so severe or diverse

Edited by member 19 May 2022 at 23:21  | Reason: spelling

Barry
User
Posted 19 May 2022 at 07:31

I am currently going through RT, today will be day 11 of 37!


I leave in 5 mins...


My instructions are empty bowel and bladder ( you get mini enema for bowel) them drink 300 mls water at least half our before treatment time. Apparently it takes about half hour to get down.


Then treatment is quite short and you are free to go... literally!


 


Hope that helps?


Ian

User
Posted 19 May 2022 at 08:07

That's what I had to do also had 37 sessions off radiotherapy found it tolerable one year on psa now 0.01 from 24.9  generally ok had a few problems had abscess in treatment area a month ago that's about sorted and a few bowel problems that are improving over time the hormone therapy decapeptyl was ok for 12 months but had a few problems with bone ache and weight gain try to exercise more    13 months into 24 months off hormone therapy be glad to see the back off it and see how we go from there generally ok working as I did all the way through radiotherapy good luck with your treatment gaz πŸ‘

User
Posted 19 May 2022 at 09:19

Thanks Ian! How are you finding the treatment so far in terms of side effects? 


Good luck for the rest of the treatment! 

User
Posted 19 May 2022 at 10:08

Hi Kelso, just back from treatment all went ok πŸ‘


They did say I need to drink an extra cup of water as I was a bit low... There is no hiding place πŸ˜‚


What I forgot to mention earlier that throughout the day you also need to drink 2 to 2.5 litres of water/ squash as well as what the require for the treatment. The reason is to lift the bladder away from the prostate out of harms way. The machines are very accurate and you may be given 3 tattoos (tiny dots) and even gold seed implants which you get to keepπŸ˜‚


It all helps with the alignment.


I am also on hormone therapy for next 2 years (started in Jan) and the main side effects for me is hot flushes... which are entirely manageable and always gets comments from the ladies. HT can give you weariness a bit and I think RT might in the latter stages. I am trying to watch my weight and tbh the whole thing is a balancing act!


Once you get into a routine and take control of your body, it will be ok.


So hand yourself over to the team and God and try to do all that they ask.


It really helps to have a positive mindset and also use mechanisms like the forum to keep you on the right side of things.


 


With every blessing 


Ian

User
Posted 19 May 2022 at 11:55

A few things from my experience.


You have a tendency to become less continent during the treatment and for the month afterwards. I switched to wearing disposable pants half way through. I never did have an accident, but knowing it didn't matter if I did was good security.


Most people get a change in bowel habits. Usually, this is looser stools, wind, and mucus (mucus farts as my oncologist puts it), going more often, and also losing the ability to sense if a fart is safe or not. For the looser stools, it may be necessary to switch to a low or very low fibre diet, but don't change diet until/unless it becomes necessary. I had to stop eating fruit and veg and anything with brown flour, brown rice, or seeds. There are a few exceptions, peeled apples, pears, bananas, potatoes are low fibre and OK. This slowly improved from a month after the radiotherapy, and was just about back to normal 5 months later, except for broccoli which took a year before I could eat it again. Another effect is a false sense you need to do a #2 when there's actually nothing there to do.


In a small number of cases, the opposite happens and people get constipation, in which case you need to eat more fibre.


Pelvic floor exercises are really important, and I think I only managed to stay continent because I'd been doing them. He can start doing those now.


One other thing, at some point, you may lose the ability to do just #1's as distinct from #2's, i.e. you may find you managed to s*** yourself while standing to pee. This is another temporary effect which recovers a month or so after treatment, but if this happens, it's best to always sit down to pee until it recovers.

User
Posted 19 May 2022 at 20:02

Thanks  Ian, sounds like your on similar treatment to my father with RT and 2 year HT. Hopefully will get more info on Monday when he has his planning session. But this forum has been so helpful to hear people's experiences. All the best with the treatment Ian!  

User
Posted 19 May 2022 at 20:05

Thanks Andy this is really useful, especially pelvic floor exercises- haven't come across that yet.

User
Posted 19 May 2022 at 20:08
Thank you everyone for replying, really appreciate it. This community has been amazing and would be great to connect to anyone local to us and having treatment at Charing Cross Hospital in London.
User
Posted 20 May 2022 at 20:11
As someone else due shortly to start radiotherapy (salvage in my case) thanks for all the inside information on the experience and dealing with it.

The whole thing started last October with referral to Oncology for biochemical recurrence, i.e. increasing PSA 5+ years after removal of my prostate. However the oncologist was worried about a bowel symptom, which ended up with getting a polyp excised and then waiting for the wound to heal. I finally seem to be back on the pathway to RT with an appointment this week to sign the forms, another 3-month injection of hormone, and promise of initial pre-RT scan in the next 2-3 weeks. We will see!
User
Posted 21 May 2022 at 00:22
Some really good responses above:
- most but not all men are asked to drink water and maintain a full bladder during RT - some oncos prefer the bladder to be empty
- not all hospitals require all men to have enemas or mini-enemas - some hospitals prefer the man to get his bowel empty through self-management / diet and only give enemas if the man isn't getting it right
- some men are asked to go onto a high fibre diet, others are asked to go on a low fibre diet - your hospital RT team will advise what they want Dad to do
- almost all hospitals advise patients to avoid alcohol during RT along with anything that produces gas - fizzy drinks, for example. Gas is the enemy
- skin around the midriff can get sore, similar to sunburn, particularly if Dad is fair skinned. Avoid scented showergels and stick with mild or PH zero products such as baby wash
- once RT is finished, his skin may be very sensitive to sunlight - if planning a holiday, he should wear sun cream of factor 50+ and keep his t-shirt on if possible.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 May 2022 at 23:45

Thank you LynEyre, this is really useful. My father has his appointment tomorrow so hopefully will find out the details. 

User
Posted 29 Jun 2022 at 11:28
Dear all,

so my dad started his RT treatment and is on day 12. Everything was going ok but now he has a really weak stream and he describes the sensation as ' tight/pressure' with some pain, it can take up to 3 minutes to empty his bladder and frequency of going toilet has increased.

I know some of these side effects can be common, but my concern is this 'tight' sensation he feels and whether he is getting urethral stricture. From what I read this isn't such a common side effect and the treatment can be quite invasive.

Wondered to check if anyone experienced this, if it went away with time or required treatment and is there anything he can do to avoid/improve this problem.

Thank you so much in advanced!
User
Posted 29 Jun 2022 at 11:42
Has he cut all caffeine and acidic drink out of his diet? Is he drinking plenty of eater and cranberry juice?

Speak to the RT team when he attends for his zapping today. They can erhaps give him a quick ultrasound to see if there is some inflammation causing retention
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Jun 2022 at 11:48

Kelso, I already had a stricture from surgery, before salvage RT. I had a suprapubic catheter fitted before SRT in case the stricture closed up. I don't know what percentage of Guys get  strictures with primary RT but it is a known side effect. 


If he ever gets to the point where he fails to pass urine get medical help straight away. Retention is unpleasant and potentially harmful. Speak to his medical team and see what the emergency route would be. My consultant had a note put into my notes that gave me open access to our urology ward. 


A catheter is an option if he really needs it.


Thanks Chris 


 


 

User
Posted 29 Jun 2022 at 11:54

Thank you LynEyre and Chris for the advice, will take them on board! 😊

User
Posted 29 Jun 2022 at 12:48

Kelso, I just finished my 37 fractions yesterday and rang the bell! The last couple of weeks though things got really tight and a bit painful. I was prescribed Tamsulosin which has gone some way to ease things but it is still tough and I am hoping and praying each day will get a little easier. I was tested twice for infection along the way but both times were negative.


It seems it to be a common occurrence but I don't like being a statistic, I just want it to ease up!


I do hope your dad can get some resolution, as time goes by it also affects your sleeping.


Wishing him every blessing.


Snowwy

User
Posted 29 Jun 2022 at 17:30
A tight feeling while urinating is a common side effect of RT. The radiation make the prostate swell up and it presses against the urethra. I was prescribed Tamsulosin for it and it completely solved the problem for me.

All the best,

Chris
User
Posted 29 Jun 2022 at 19:40

Originally Posted by: Online Community Member
I don't know what percentage of Guys get strictures with primary RT but it is a known side effect.


About 8% get a stricture, but it's usually a late onset side effect (typically 6 months or more later), not during the treatment.


Flow issue during treatment is much more likely to be caused by swelling. Tamsulosin (or another Alpha-blocker) would be good to try, or failing that, a catheter.

User
Posted 29 Jun 2022 at 22:39
Thank you all for taking the time to reply. I feel reassured that it is fairly common (panic over), will monitor him and liaise with the RT team at the hospital. Should avoid reading too much online!! So grateful for this community for giving advice and sharing personal experiences :)
 
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