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Radiotherapy what is it like?

User
Posted 23 Feb 2017 at 19:28
Hello my Dad has a diagnosis of PC T3BN0M0 and is three weeks into hormone therapy. He is waiting to see his consultant to find out when radiotherapy is likely to start. I'm just wondering if anyone would be happy to share their experiences of radiotherapy so I can help Dad understand what to expect. I appreciate everyone's situation is different but I'd be interested to know what exactly happens when you go and what you have to do to prepare. Many thanks x
User
Posted 23 Feb 2017 at 20:18

He will attend a planning appointment before it all starts, where they will scan him and also give him some tiny tattoos like biro spots above his hips or similar. The oncologist then writes a computer programme for the scanning machine based on those scans of where his prostate, bladder, bowel, etc all sit. The RT waves are planned so that they penetrate to exactly the right depth to hit the right bits and - as much as possible - miss the other bits.

John made all his appointments for 8.30am and went on his way to work. He was usually out and on his way to work well before 9am except on Wednesdays when they did an extra scan and he would see the onco for a catch up. Some men never see the onco while they are having RT though.

Most men have to drink a set amount of water 45 mins before the appointment and then not have a wee until after the zapping so that their bladder is full (this lifts the bladder up out of the way of the radiowaves). The team will advise how empty they want his bowel to be; some men are asked to give themselves an enema each day before the appointment but not everyone. John didn't have to do that and I think it depends partly on where your internal organs sit naturally and partly on how effective you are at emptying your bowel naturally :-/ At the appointed time, he will go into the RT suite and lie on a bed - the medics scan his pelvic area, line him up with the machine and then they leave the room and operate the machine from behind a screen. It takes about 5 - 10 minutes.

You will hear different advice about what dad should or should not eat while he is having RT but it is really important to follow the advice of his medical team rather than what others have been told. Some men are told to have a high fibre diet to keep the bowel moving but others are told to have a low fibre diet instead to minimise the chance of gas. Almost everyone is told that alcohol, caffeine and fizzy drinks are an absolute no-no.

Edited by member 23 Feb 2017 at 20:31  | Reason: Not specified

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

User
Posted 24 Feb 2017 at 17:37

Oooh, I forgot about the skin soreness. It is rather like sunburn so apparently, fair skinned men are more likely to be affected than those with dark skin. John has very dark skin so didn't have any problems but you are advised not to go out sunbathing for a while after the treatment finishes (so we squeezed an overseas holiday in beforehand rather than wait until after)

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

User
Posted 24 Feb 2017 at 19:14

That's great PenP but since there are some things that he may not want to talk about in front of his daughter, you might want to offer to go out of the room for the last five minutes of the appointment.

Also be aware that some oncos will start RT 8 weeks after the HT began but many prefer to wait 3 or even 6 months as research indicates that it makes the RT more effective.

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

User
Posted 09 Mar 2017 at 22:55

Recent research has suggested that the longer he is on hormones before the RT the better, so 6 months HT is becoming more and more common.

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

User
Posted 10 Mar 2017 at 07:26

All the advice you have been given is absolutly spot on, LynEyre's advice is so close to what I have just experienced myself she could have been with me.
I have just finished 36 sessions of RT, over here in Spain but it is exactly the same, I too timed my water intake to coincide withg the treatment time, as I found it increasing difficult to hold the water in as the treatment progressed.
Other than that and a lot of flatulance especially during the night, I had virtually no after effects although my bowel movements have gotten looser as the treatment went on and I was told these after effects could last for a few weeks on completion of the treatment. I did occasionally feel very tired some afternoons but not sure if this was down to side effects of the treatment or the fact I had a 70 miles round trip each day, which i drove myself although I had many offers to drive me, but always felt well enough to be able to drive myself.
The only other thing I was given was some Vitanatur Symbiotics G, which I believe are good bacteria replacement drinks, i take one sachet each morning in a little water before eating or drinking anything else. I wasnt given or offered hormones so cannot comment on them.
My treatment was completly painless and only took a few minutes each day.
Good luck to your Dad

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User
Posted 23 Feb 2017 at 20:18

He will attend a planning appointment before it all starts, where they will scan him and also give him some tiny tattoos like biro spots above his hips or similar. The oncologist then writes a computer programme for the scanning machine based on those scans of where his prostate, bladder, bowel, etc all sit. The RT waves are planned so that they penetrate to exactly the right depth to hit the right bits and - as much as possible - miss the other bits.

John made all his appointments for 8.30am and went on his way to work. He was usually out and on his way to work well before 9am except on Wednesdays when they did an extra scan and he would see the onco for a catch up. Some men never see the onco while they are having RT though.

Most men have to drink a set amount of water 45 mins before the appointment and then not have a wee until after the zapping so that their bladder is full (this lifts the bladder up out of the way of the radiowaves). The team will advise how empty they want his bowel to be; some men are asked to give themselves an enema each day before the appointment but not everyone. John didn't have to do that and I think it depends partly on where your internal organs sit naturally and partly on how effective you are at emptying your bowel naturally :-/ At the appointed time, he will go into the RT suite and lie on a bed - the medics scan his pelvic area, line him up with the machine and then they leave the room and operate the machine from behind a screen. It takes about 5 - 10 minutes.

You will hear different advice about what dad should or should not eat while he is having RT but it is really important to follow the advice of his medical team rather than what others have been told. Some men are told to have a high fibre diet to keep the bowel moving but others are told to have a low fibre diet instead to minimise the chance of gas. Almost everyone is told that alcohol, caffeine and fizzy drinks are an absolute no-no.

Edited by member 23 Feb 2017 at 20:31  | Reason: Not specified

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

User
Posted 23 Feb 2017 at 20:38
Hi Lyn thank you that's really informative and useful information, very much appreciated and I'll read it to Dad when I see him tomorrow. It's really good to hear of other people's experiences and amazing to consider people are having it done on their way to work! Thanks again x
User
Posted 24 Feb 2017 at 17:13

Just some small additional information. I and a number of others who have had EBRT have found the need to pee more frequently and urgently and I planned my journey to take this into account (Fortunately, In my case, I didn't have to drink water before the RT and retain it which would have put an even greater strain on my need to use the toilet. This frequency was experienced in my case to a lesssening extend after RT ended and only got back to pretreatment frequency about 8 weeks after treatment finished.

Personally I found HT more debilitating and other than the aforementioned problem, RT did not add significantly to side effects. In common with some other men I did experience some soreness for which a mild ointment was prescribed. Care should be taken not to use certain soaps especially scented ones nor rub affected areas but rather dab I was told. Dad may well lose some hair in the pelvic area but this should regrow in time.

The radiation is absolutely painless, a bit like having a prolonged X-ray with the linac moving through preset angles to deliver the radiation dose with a rather whirring like noise.

Most men cope with RT very well and Dad would be very unlucky if he was one of the very few who are so affected that the sessions (called Fractions), had to be discontinued.

Barry
User
Posted 24 Feb 2017 at 17:37

Oooh, I forgot about the skin soreness. It is rather like sunburn so apparently, fair skinned men are more likely to be affected than those with dark skin. John has very dark skin so didn't have any problems but you are advised not to go out sunbathing for a while after the treatment finishes (so we squeezed an overseas holiday in beforehand rather than wait until after)

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

User
Posted 24 Feb 2017 at 18:34
Thanks Barry, much appreciated. It is good to have the full picture of what it 'might' be like for Dad and interesting to hear about things that can be prescribed like the ointment you mention to lesson symptoms. Dad has agreed to let me attend his next appointment with the consultant which I'm really pleased about. Best wishes to you.
User
Posted 24 Feb 2017 at 18:42
From somebody who has had salvage radiotherapy, I can tell you that Lyn's advice is absolutely spot on
User
Posted 24 Feb 2017 at 19:14

That's great PenP but since there are some things that he may not want to talk about in front of his daughter, you might want to offer to go out of the room for the last five minutes of the appointment.

Also be aware that some oncos will start RT 8 weeks after the HT began but many prefer to wait 3 or even 6 months as research indicates that it makes the RT more effective.

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

User
Posted 09 Mar 2017 at 19:53
Hello everyone and thank you for your replies on this thread, invaluable advice and support as always and greatly appreciated. I'm just wondering, with the radiotherapy I assumed it would start for Dad pretty much exactly three months after beginning hormone treatment. But yesterday we were told that it might be four months (I think the department is really busy). The consultant said this wasn't a problem and I'm guessing the longer we wait the better shrinkage of the cancer? I think in our minds we were just gearing up for radiotherapy in May but we may have to wait longer amd I'd appreciate anyone's thoughts on this. Thank you so much and best wishes to everyone as always.
User
Posted 09 Mar 2017 at 22:55

Recent research has suggested that the longer he is on hormones before the RT the better, so 6 months HT is becoming more and more common.

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

User
Posted 10 Mar 2017 at 07:26

All the advice you have been given is absolutly spot on, LynEyre's advice is so close to what I have just experienced myself she could have been with me.
I have just finished 36 sessions of RT, over here in Spain but it is exactly the same, I too timed my water intake to coincide withg the treatment time, as I found it increasing difficult to hold the water in as the treatment progressed.
Other than that and a lot of flatulance especially during the night, I had virtually no after effects although my bowel movements have gotten looser as the treatment went on and I was told these after effects could last for a few weeks on completion of the treatment. I did occasionally feel very tired some afternoons but not sure if this was down to side effects of the treatment or the fact I had a 70 miles round trip each day, which i drove myself although I had many offers to drive me, but always felt well enough to be able to drive myself.
The only other thing I was given was some Vitanatur Symbiotics G, which I believe are good bacteria replacement drinks, i take one sachet each morning in a little water before eating or drinking anything else. I wasnt given or offered hormones so cannot comment on them.
My treatment was completly painless and only took a few minutes each day.
Good luck to your Dad

 
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