Hi everyone,
It's been a while since we were on here. A quick update, my husband had surgery in Jan, and is now on hormone treatment. His last PSA was undetectable. However, due to having a gleason of 9, and positive margins at bladder neck in surgery, the oncology team want to also give radiotherapy. Initially they were concerned about a lymph node out of the pelvic area, but this has been found to be non cancerous, thankfully.
Pete has lymphodema following surgery, although thankfully mild now. He also has incontinence and still wears pads.
He is 47.
Any way, the question is: Can any men out there who have had radiotherapy comment on side effects? We are concerned it will worsen the lymphodema and incontinence, have side effects years later too.. Please don;t get me wrong, we are very thankful that he can be offered this, with a view to eventual cure. I know so many cannot be offered the same, and honestly my heart goes out to those in that situation. But we are understandably concerned about effects on Pete's quality of life, especially as he is still relatively young, and we have a 5 year old daughter etc...
What have your experiences of adjuvant radiotherapy been?
Many thanks
'Sorrow looks back, worry looks around, but faith looks up' |
User
Hi, might be worth a read of my last post - Hubbies update.
He has come through surgery, RT and hormones. Things do seem to improve with time. Main side effect from RT has been some bowel problems and wind. I think the problems with incontinence and ED were more caused by the combination of surgery and hormones.
But he has good scores now so worth going through it. After 2 years he still wears a pad but more for being caught short rather than constant dribbling.
Everyone is different and I think that general good health and a positive attitude can really help.
Good luck in your journey
Lorraine
User
Ali, John breezed through RT with no issues at all but it was 2 years after the op so no incontinence to complicate things. Have they said how they are planning to deliver the RT? There are variations - normally 37 sessions of 2Gy but John had 20 sessions at a higher dose as part of a trial - early data suggests less side effects that way and a good option for fit guys.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Good to hear from you again Ali, and glad you are getting over the first bout of treatment, and all seems to be going well.
We only had RT so cannot comment on it additional to RP but just wanted to say hello.
ATB
Alison
User
I'm RT/HT guy so can only partly answer long term RT side effects. Due to age 3 routine bowel screening all Ok. Long term bladder frequency but it's no big deal. In 2005 I had the 20 session higher dose as I was deemed fit. It was thought it would improve survival time (10 yrs now) but it came with the caution of possibly more severe long term side effects. However as Lyn pointed out fit guys seem to be Ok so it could be worth asking about.
Ray
User
I had adjuvent RT and like Lyn's OH i had 20 doses of 3.2 gy. I also got through with very little side effects.
The main thing is to follow the advice of the radiologists. You will need to have a full bladder and empty bowel. As well as anything else this ensures the target area is consistent.
For men who still have a Prostate the full bladder 'pins' the prostate in place.
Bri
User
I had 20 daily sessions in March & April with 3 days postponed due to machines being down, don't know the technical specs and received no specific instruction re full bladder or empty bowel.
Thankfully no incontinence though considerable digestive distress. What Marvel comics didn't tell the kids is that when Bruce Banner became the Hulk following the accident in the radiation lab the Hulk exploded out of Bruce Banner's backside. KNOW where the toilets are and if you forgive my crudity, don't trust a fart.
Quite a lot of fatigue and it got progressively worse as the sessions passed and continued for about 3 weeks after but it was the sort you could push through if you had to and if you didn't have to then what's wrong with just resting up in the recliner with a libation?
A little burning on the backside which the cream easily handled.
All in all I'd say it was pretty much OK but unlike the HT I felt really good about the RT, this was me (I lay still for 10 mins whilst a superb team did what they do well) actually attacking the demon. it was a long hike from the bus bay to the radiation basement and every day I'd march it listening to "Jump that Train" as if I were going into battle.
Hope your other half has it as easy or even easier than I did.
Mike
Edited by member 28 Jul 2015 at 22:41
| Reason: Not specified
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User
Hi, might be worth a read of my last post - Hubbies update.
He has come through surgery, RT and hormones. Things do seem to improve with time. Main side effect from RT has been some bowel problems and wind. I think the problems with incontinence and ED were more caused by the combination of surgery and hormones.
But he has good scores now so worth going through it. After 2 years he still wears a pad but more for being caught short rather than constant dribbling.
Everyone is different and I think that general good health and a positive attitude can really help.
Good luck in your journey
Lorraine
User
Ali, John breezed through RT with no issues at all but it was 2 years after the op so no incontinence to complicate things. Have they said how they are planning to deliver the RT? There are variations - normally 37 sessions of 2Gy but John had 20 sessions at a higher dose as part of a trial - early data suggests less side effects that way and a good option for fit guys.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Good to hear from you again Ali, and glad you are getting over the first bout of treatment, and all seems to be going well.
We only had RT so cannot comment on it additional to RP but just wanted to say hello.
ATB
Alison
User
I'm RT/HT guy so can only partly answer long term RT side effects. Due to age 3 routine bowel screening all Ok. Long term bladder frequency but it's no big deal. In 2005 I had the 20 session higher dose as I was deemed fit. It was thought it would improve survival time (10 yrs now) but it came with the caution of possibly more severe long term side effects. However as Lyn pointed out fit guys seem to be Ok so it could be worth asking about.
Ray
User
I had adjuvent RT and like Lyn's OH i had 20 doses of 3.2 gy. I also got through with very little side effects.
The main thing is to follow the advice of the radiologists. You will need to have a full bladder and empty bowel. As well as anything else this ensures the target area is consistent.
For men who still have a Prostate the full bladder 'pins' the prostate in place.
Bri
User
I had 33 sessions. Looking ahead it seemed daunting but looking back, it passed very quickly.
I think any tiredness that I had was more to do with the 50 mile round drive rather than being caused by the treatment. The appointments were scattered around the whole day, presumably to ensure fairness but on occasion I did find a late 7 pm followed the next day for a 7 am arrival* a bit tiring. On a couple of times when that happened, I stayed in a local Travelodge but that was more out of convenience than necessity.
One side effect that I did have and caused me a bit of a scare was significant bleeding half way through the treatment.
But this is so rare that it's only worth mentioning in passing in the extremely unlikely event that someone else encounters the same.
My bleeding was almost certainly caused by haemorrhoids that I was previously unaware of and that were instigated by the sharp 'increase in traffic' caused by the bowel emptying regime.
The camaraderie in the waiting room among the 'prostate men' was a plus factor.
Dave
*Nothing out of the ordinary when I was working but I've been retired a good while now !http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif
Edited by member 12 Jul 2015 at 12:27
| Reason: Not specified
Not "Why Me?" but "Why Not Me"? |
User
I had 37 sessions of radiotherapy with very little side effects. I had slight soreness at the rear but solved that with aqueous cream. I had what is called "late effects" - a discharge from my rear at times which could be embarrassing. Some tiredness but that was probably due to travelling as Dave has said, I had a 7am start every day, but meeting the same people most days we shared our experiences and generally had a laugh together. 99% were positive every day
Arthur
User
Originally Posted by: Online Community MemberI had adjuvent RT and like Lyn's OH i had 20 doses of 3.2 gy. I also got through with very little side effects.
The main thing is to follow the advice of the radiologists. You will need to have a full bladder and empty bowel. As well as anything else this ensures the target area is consistent.
For men who still have a Prostate the full bladder 'pins' the prostate in place.
Bri
John was told not to have a full bladder for RT because they included the bottom of his bladder in the target area for zapping. A full bladder lifts it out of area. Each man's RT map is designed individually and so the 'full bladder, empty bowel, drink 1.5l' varies according to where they think the spread might be. Like John, this lady's husband had PCa in his bladder so they might want to target it.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Originally Posted by: Online Community MemberOriginally Posted by: Online Community MemberI had adjuvent RT and like Lyn's OH i had 20 doses of 3.2 gy. I also got through with very little side effects.
The main thing is to follow the advice of the radiologists. You will need to have a full bladder and empty bowel. As well as anything else this ensures the target area is consistent.
For men who still have a Prostate the full bladder 'pins' the prostate in place.
Bri
John was told not to have a full bladder for RT because they included the bottom of his bladder in the target area for zapping. A full bladder lifts it out of area. Each man's RT map is designed individually and so the 'full bladder, empty bowel, drink 1.5l' varies according to where they think the spread might be. Like John, this lady's husband had PCa in his bladder so they might want to target it.
As I said they need to listen to what they are advised. The point about the full bladder was mainly for men who still have a Prostate. The full bladder will pin the prostate in place to help with accurate zapping of the cancer as the prostate can move position to some degree
Bri.
Edited by member 12 Jul 2015 at 14:04
| Reason: Not specified
User
Thanks everyone, for your help.
We see the radiographer at the end of the month, so some of your posts have helped us come up with questions we need to ask.
Thanks again
'Sorrow looks back, worry looks around, but faith looks up' |
User
If I was giving any tips, my advice would be;
1. A lightweight dressing gown is much more convenient than those hospital gowns we were given for transit between changing room and RT suite.
2 Check out the location of ALL the toilets
3 I found that prostate group at my hospital gathered around the water fountain and often having got into conversation, I'd lose count of the number of cups of water I was supposed to drink ("Was that my second or third cup) I got around that by filling a normal plastic bottle with the right total amount of water that was required to be drunk.
4. Wet toilet tissue came in handy.
Dave
Not "Why Me?" but "Why Not Me"? |
User
Danny, age 75, is on Day 10 of 19 treatments. Apart from suddenly 'hitting a brick wall' where he has to go to bed for a couple of hours, he seems ok. Parking at our hospital is a nightmare so I always go with him so I can find a space while he goes in. We found comments from others on here really helpful - they filled in the bits that the medical chaps left out. He does still have his prostate and has to drink the three glasses of water before treatment. What he finds more tricky is achieving the empty bowel to order! All the best.
User
I had 20 daily sessions in March & April with 3 days postponed due to machines being down, don't know the technical specs and received no specific instruction re full bladder or empty bowel.
Thankfully no incontinence though considerable digestive distress. What Marvel comics didn't tell the kids is that when Bruce Banner became the Hulk following the accident in the radiation lab the Hulk exploded out of Bruce Banner's backside. KNOW where the toilets are and if you forgive my crudity, don't trust a fart.
Quite a lot of fatigue and it got progressively worse as the sessions passed and continued for about 3 weeks after but it was the sort you could push through if you had to and if you didn't have to then what's wrong with just resting up in the recliner with a libation?
A little burning on the backside which the cream easily handled.
All in all I'd say it was pretty much OK but unlike the HT I felt really good about the RT, this was me (I lay still for 10 mins whilst a superb team did what they do well) actually attacking the demon. it was a long hike from the bus bay to the radiation basement and every day I'd march it listening to "Jump that Train" as if I were going into battle.
Hope your other half has it as easy or even easier than I did.
Mike
Edited by member 28 Jul 2015 at 22:41
| Reason: Not specified