Hello again Farrah. If you click on my avatar it brings up my husband's profile. Sorry it's a bit long winded as I tend to use it as an online Diary but it gives you the gist.
My husband was a lot older than yours when he had the procedure and here we are just over two years down the line with no major problems that can be attributed to the Brachytherapy (currently being checked for skin cancer but that's another story!)
As far as cycling is concerned he would have to ask his consultant for advice I think. There are a number of opinions on cycling and PC but whether there is a definitive answer I'm not sure. It's supposed to be best not to cycling or have intercourse immediately before a PSA as it can raise it and possibly give a false reading.
There are quite a few members on here now who have had the permanent seeds implanted and I am sure they will offer their advice eventually.
As you said, there could be different results for different men having the same treatment, but that applies to all treatments, not just this one.
Have you downloaded The Toolkit from publications yet? There is a leaflet there on permanent seed brachytherapy.
Anyway, if you can spare the time to read my lengthy profile on John then feel free and if you have any questions then either ask on here or personal message me.
I'm happy to help in any way I can, as are all our members.
We are all in the same boat, going in the same direction, although some of us have to paddle our canoes a little differently. The aim for all of us is to be cancer free if possible or at the very least to live our lives with the disease as best and as most fulfilling as we can.
There will be hiccups on your road, not because of the treatment choice, but because PC is what it is. Together you will get through it though. Be patient with him and he with you. There is a lot to get used to in the future, but there is a new future there for both of you.
Best Wishes
Sandra
***********
We can't control the winds - but we can adjust our sails |
User
Hello. My other half had brachy Jan 2015. I think he is a rare case as had very bad side effects. The problems did start when he had the biopsy. He was told he'd got prostatitis. He had antibiotics etc. Not a lot helped. The brachy was 6 months after the biopsy. So 18 months on he has had about 1 years worth of antibiotics and it is still causing problems. At the moment he is in the tractor a lot of the day haymaking and it is getting quite painful inside. At least once a day he'll have a wee and says its like peeing hot glass and the pain goes up inside his bottom. No one can come up with a solution. I have spoken to quite a few people that have had brachytherapy, none of them have had side effects like these. In fact 2 people we see quite regularly and they had a little discomfort for a few weeks and that was all. So I'm sure your husband will be fine. Good luck.
User
Farrah, sjtb's husband was unfortunate. I don't think there are many Brachytherapy people that had that much trouble.
It's not discomfort free in the initial stages. There is blood in the urine and semen and that can go on for weeks. It can even look quite horrendous with clots etc but it passes.
Constipation should be avoided at all costs as it is most uncomfortable.
Sometimes antibiotics are given before and/or afterwards. My John only had it in the hospital but never had any trouble with infection.
If the other half is booked in for Brachytherapy and is determined to go ahead with it then there is no point in letting him know what the possible problems are since he might not get them.
Have you stocked up on incontinence pads? He might not need them for long but is likely to find a use for them at the start.
Have you thought about protection for your mattress? Old towels under the sheet will help but you can buy one way liners like you'd put on a childs bed.
Bed protection is well worth thinking about.
If he's talking about doing nothing (and it's not surprising - the unknown can be frightening) then what does he suppose the outcome will be? PSA of 10.4 is high
Fingers crossed he will be fine.
******
Edited by member 15 Jul 2016 at 15:53
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
User
Yes I said my other half was very unfortunate. The actuall op was fine. No where near as bad as he expected. I've not heard of anyone having incontinence problems after brachy apart from I think Sandra's husband, though I don't think they were bad (I can't quite remember). My other half had no problems with leaking but by about week 4 he would need to go and quickly! But my oh had no immediate side effects. He spent a night in hospital cane home the next day and was out feeding cattle in the evening. As i said he'd had problems after the biopsy. So it was probably silly to have had brachy without sorting out the prostatitis. If you asked him though he'd say no he wouldn't do it again. He'd have stayed on active surveillance which was recommended anyway.
He says he should have had EBRT but he may have had the same problems then. We'll never know.
Edited by member 15 Jul 2016 at 20:30
| Reason: Not specified
User
Whatever radical treatment is given there is a risk of side effects. A comparatively small number are seriously affected permanently although ED and urinary incontinence seems more likely in those that have surgery.
Many who have brachytherapy do not specify whether it is low or high dose. The permanent placement of radioactive seeds is termed low dose, whereas high dose involves the insertion of radioactive rods into the prostate which are then withdrawn before the end of the operation. Either low or high dose radiotherapy can be supplemented by external beam radiation where considered appropriate as a separate part of the treatment but not at the time brachytherapy is administered.
Barry |
User
It depends what he means by 'doing nothing'. Active surveillance could be described as doing nothing but in actual fact, if done properly comprises of regular PSA monitoring with regular DREs and at least annual MRI scans so there is a good chance of picking up any escalation before it is too late. True 'doing nothing' is rather different and rather appealing - your husband may get a bit of a reality check if he knew that my father in law decided to do nothing and lived for only 4 years. I do feel for you because my husband bitterly regretted his treatment choice for a long time; often to be heard saying that he would rather have lived a short time without the side effects (he had the op followed by RT / HT when the cancer came back a couple of years later). Now he feels a bit different about it but it has been a long dark tunnel to get here.
What I think men don't always factor in when debating the risk of side effects from the various treatments is that 'doing nothing' - letting the cancer take its course - is likely to produce most of the same side effects and worse. A man with advanced PCa is not likely to be having erections, will become too ill and weak to have any intimate relationship, will often have either incontinence or frequency and multiple night visits, will need a catheter as the cancer enlarges the prostate and blocks the urethra, lives with constant pain, or may lose the use of his legs or other side effects as it spreads to the organs, bones, lungs or wherever. Treatment side effects start to look like a minor risk in comparison.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
I had HDR Brachytherapy, and was experiencing similar problems plus blood in my urine.
My urologist put me on Dutasteride, and within 2 weeks I was well on the mend. After 4 weeks no symptoms at all. I took Dutasteride for around 3 months in total.
(That isn't a diagnosis, or advice about what to do, just a comment from someone who had a similar experience. I hope he finds his solution!)
Pierre
|
User
Hello, my problems only started about 16 months after Brachytherapy. My urologist wasn't certain it was related to the Brachytherapy, or subsequent radiotherapy. He prescribed the Dutasteride on the basis that it could be BPH . Slightly ironic after all the cancer treatment.
Pierre
|
Show Most Thanked Posts
User
Hello Farrah and welcome, although I know you have been a member since May but this is your first post?
Sorry can't offer advice since my husband's Brachy was permanent seed but I'm sure somebody will be along to offer assistance.
All the best
Sandra
*******
We can't control the winds - but we can adjust our sails |
User
Hi Sandra, yes I was on having a look back then but only posted today after speaking to one of the online nurses
It is permanent seeds he is getting, I must have used the wrong description.
So any advice/info Ssndra would be great ππΌ
User
Hello again Farrah. If you click on my avatar it brings up my husband's profile. Sorry it's a bit long winded as I tend to use it as an online Diary but it gives you the gist.
My husband was a lot older than yours when he had the procedure and here we are just over two years down the line with no major problems that can be attributed to the Brachytherapy (currently being checked for skin cancer but that's another story!)
As far as cycling is concerned he would have to ask his consultant for advice I think. There are a number of opinions on cycling and PC but whether there is a definitive answer I'm not sure. It's supposed to be best not to cycling or have intercourse immediately before a PSA as it can raise it and possibly give a false reading.
There are quite a few members on here now who have had the permanent seeds implanted and I am sure they will offer their advice eventually.
As you said, there could be different results for different men having the same treatment, but that applies to all treatments, not just this one.
Have you downloaded The Toolkit from publications yet? There is a leaflet there on permanent seed brachytherapy.
Anyway, if you can spare the time to read my lengthy profile on John then feel free and if you have any questions then either ask on here or personal message me.
I'm happy to help in any way I can, as are all our members.
We are all in the same boat, going in the same direction, although some of us have to paddle our canoes a little differently. The aim for all of us is to be cancer free if possible or at the very least to live our lives with the disease as best and as most fulfilling as we can.
There will be hiccups on your road, not because of the treatment choice, but because PC is what it is. Together you will get through it though. Be patient with him and he with you. There is a lot to get used to in the future, but there is a new future there for both of you.
Best Wishes
Sandra
***********
We can't control the winds - but we can adjust our sails |
User
Thank you Sandra, the nurse I spoke with today is sending some literature for him.
I will have a read at your husbands experiences and thanks for your help so far π
User
Hello. My other half had brachy Jan 2015. I think he is a rare case as had very bad side effects. The problems did start when he had the biopsy. He was told he'd got prostatitis. He had antibiotics etc. Not a lot helped. The brachy was 6 months after the biopsy. So 18 months on he has had about 1 years worth of antibiotics and it is still causing problems. At the moment he is in the tractor a lot of the day haymaking and it is getting quite painful inside. At least once a day he'll have a wee and says its like peeing hot glass and the pain goes up inside his bottom. No one can come up with a solution. I have spoken to quite a few people that have had brachytherapy, none of them have had side effects like these. In fact 2 people we see quite regularly and they had a little discomfort for a few weeks and that was all. So I'm sure your husband will be fine. Good luck.
User
Gosh that sounds awful, i don't think I will mention this to him π³
I suppose it's an unknow quantity and he won't know till he gets the treatment but I can see that he is stressing out about it leading up to the op.
He's not good at coping when he has a cold (man flu) never mind something like this, I'm dreading it to be honest.
He is now swithering about it and even talking about doing nothing and taking a chance it won't get worse....π±
Do you think your husband would get it done again considering what he's been through ?
User
Farrah, sjtb's husband was unfortunate. I don't think there are many Brachytherapy people that had that much trouble.
It's not discomfort free in the initial stages. There is blood in the urine and semen and that can go on for weeks. It can even look quite horrendous with clots etc but it passes.
Constipation should be avoided at all costs as it is most uncomfortable.
Sometimes antibiotics are given before and/or afterwards. My John only had it in the hospital but never had any trouble with infection.
If the other half is booked in for Brachytherapy and is determined to go ahead with it then there is no point in letting him know what the possible problems are since he might not get them.
Have you stocked up on incontinence pads? He might not need them for long but is likely to find a use for them at the start.
Have you thought about protection for your mattress? Old towels under the sheet will help but you can buy one way liners like you'd put on a childs bed.
Bed protection is well worth thinking about.
If he's talking about doing nothing (and it's not surprising - the unknown can be frightening) then what does he suppose the outcome will be? PSA of 10.4 is high
Fingers crossed he will be fine.
******
Edited by member 15 Jul 2016 at 15:53
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
User
Hi Sandra
We will just have to cross each bridge as it comes I suppose π£
Thanks for the useful tips I will get prepared ππΌ
User
Yes I said my other half was very unfortunate. The actuall op was fine. No where near as bad as he expected. I've not heard of anyone having incontinence problems after brachy apart from I think Sandra's husband, though I don't think they were bad (I can't quite remember). My other half had no problems with leaking but by about week 4 he would need to go and quickly! But my oh had no immediate side effects. He spent a night in hospital cane home the next day and was out feeding cattle in the evening. As i said he'd had problems after the biopsy. So it was probably silly to have had brachy without sorting out the prostatitis. If you asked him though he'd say no he wouldn't do it again. He'd have stayed on active surveillance which was recommended anyway.
He says he should have had EBRT but he may have had the same problems then. We'll never know.
Edited by member 15 Jul 2016 at 20:30
| Reason: Not specified
User
Whatever radical treatment is given there is a risk of side effects. A comparatively small number are seriously affected permanently although ED and urinary incontinence seems more likely in those that have surgery.
Many who have brachytherapy do not specify whether it is low or high dose. The permanent placement of radioactive seeds is termed low dose, whereas high dose involves the insertion of radioactive rods into the prostate which are then withdrawn before the end of the operation. Either low or high dose radiotherapy can be supplemented by external beam radiation where considered appropriate as a separate part of the treatment but not at the time brachytherapy is administered.
Barry |
User
John's problems were not permanent and he was fine after a couple of weeks so we were lucky there too
I think, looking back, it was more of a confidence problem than anything else, you know, that fear that you really must be near a toilet or you're bound to have an accident.
We can't control the winds - but we can adjust our sails |
User
It depends what he means by 'doing nothing'. Active surveillance could be described as doing nothing but in actual fact, if done properly comprises of regular PSA monitoring with regular DREs and at least annual MRI scans so there is a good chance of picking up any escalation before it is too late. True 'doing nothing' is rather different and rather appealing - your husband may get a bit of a reality check if he knew that my father in law decided to do nothing and lived for only 4 years. I do feel for you because my husband bitterly regretted his treatment choice for a long time; often to be heard saying that he would rather have lived a short time without the side effects (he had the op followed by RT / HT when the cancer came back a couple of years later). Now he feels a bit different about it but it has been a long dark tunnel to get here.
What I think men don't always factor in when debating the risk of side effects from the various treatments is that 'doing nothing' - letting the cancer take its course - is likely to produce most of the same side effects and worse. A man with advanced PCa is not likely to be having erections, will become too ill and weak to have any intimate relationship, will often have either incontinence or frequency and multiple night visits, will need a catheter as the cancer enlarges the prostate and blocks the urethra, lives with constant pain, or may lose the use of his legs or other side effects as it spreads to the organs, bones, lungs or wherever. Treatment side effects start to look like a minor risk in comparison.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Hi
Thanks for the advice .... Yes, he has been doing AS for 4 years now however as his PSA is st 10.4 doc suggesting we take action ...
Last night he was more positive and says he's going through with it ππΌ
User
I had HDR Brachytherapy, and was experiencing similar problems plus blood in my urine.
My urologist put me on Dutasteride, and within 2 weeks I was well on the mend. After 4 weeks no symptoms at all. I took Dutasteride for around 3 months in total.
(That isn't a diagnosis, or advice about what to do, just a comment from someone who had a similar experience. I hope he finds his solution!)
Pierre
|
User
Hello. Pierre. I've not heard of anyone else suffering burning so long after brachy. Was yours a long time after? I know it's quite common when the seeds are at their strongest. Thanks.
User
Hello, my problems only started about 16 months after Brachytherapy. My urologist wasn't certain it was related to the Brachytherapy, or subsequent radiotherapy. He prescribed the Dutasteride on the basis that it could be BPH . Slightly ironic after all the cancer treatment.
Pierre
|