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Permanent seed brachytherapy or op?

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User
Posted 03 Jun 2016 at 16:40

Hi all,


 


Permanent seed brachytherapy or op?


Thanks so much for all your support already.


 


It's a Gleason 6 (3+3) - contained.


Initially we were going straight for the op but having read about permanent seed brachytherapy it seems to have less side effects for ED, retaining semen etc. My husband's initial response was just get it out, didn't want active monitoring. We sort of think if the prostate is still there even with brachytherapy it could come back or spread and how do they know it hasn't spread if his MRI is difficult to read even though I know this is based on PSA and biopsy. I'm worried he won't cope with the reality of ED and incontinence although I'll absolutely love him through it all - he is convinced he will overcome it and he's very strong willed when he has a goal. I'm worried for him as he sweeps the negative stuff under the rug somewhat. I've read on here incontinence for almost a year, erections not returning at all with the op. Our surgeon seemed very confident in his own ability to save the nerves (it's robotic surgery) and said 95% of his patients are back to normal by 12 months. It didn't seem that big a deal the way he described it! Has he given us false hope here? Is the reality much different? We are going back on Tuesday to give a decision and are now a bit torn.


This is a joint decision for us but I want to be absolutely sure I'm giving him the best advice as he doesn't read the literature properly - he just listens to me when I read it all out loud whilst checking his lottery numbers! When he found out he sat in the waiting room and read the paper - gotta love him!


I want him to make his own choice but the reality is he will listen to my (your) opinion. Advice please. In hindsight which treatment would you choose?


 


Carmel

User
Posted 03 Jun 2016 at 18:01

Hello again Carmel.

My husband had the permanent seed Brachytherapy and if you are interested you can click on my profile for info.

I would just point out that he was 72/3 when he had the procedure.

I believe there is a thought that the younger the person the less likely they are to be offered Permanent Seed Brachy, because, like all of the treatments, there are possible long term side effects, in this case bowel problems may occur further down the line. The younger you are the longer you would have to live with this side effect. That could be said about all of the treatments of course.

The older you are the more likely you are to develop these problems anyway so it was a risk worth taking for us.

At 55 has your husband actually been offered Seed Brachy?

There are a few others on here that had SB and I'm sure they will be along to advise you.

Just don't rush into anything is the only positive advise I would give.

Best Wishes in whatever route you take

We can't control the winds - but we can adjust our sails
User
Posted 03 Jun 2016 at 18:19
Hi Carmel,
I can't comment on brachytherapy, but I had RRP on the 4th May and came home the day after. I'm 67 but was dry as soon as the catheter was removed although not everyone is. Apart from continuing tenderness I've done well. Your OH is younger so will dwell on the ED issues longer, if there is nerve sparing the chances are greater. I chose the op to have a chance to get things out of the way quickly - I Don' t know yet whether it has worked, my foolow up meeting is in 3 weeks.
Good luck with whatever you choose.
User
Posted 03 Jun 2016 at 21:52

My husband was 50 at diagnosis and chose RP - it was intended to be full nerve-sparing although in the end he kept all of the nerves on one side and half the nerves on the other. You might find this helpful http://community.prostatecanceruk.org/posts/t9839-One-wife-s-story-of-ED#post119001


Brachy was his first choice but our hospital doesn't offer it to men under the age of 55 - it seems though that other hospital regions do offer it to younger men. Like everything with this disease, it is a postcode lottery.


My dad had full nerve-sparing at the age of 62 and has been impotent ever since but uses injections successfully. My father-in-law refused treatment because he didn't want ED and lived for only 4 years (we realised too late that he didn't get proper AS in line with the NICE guidance). As is often said, dead men don't get erections and your husband's big question should be which treatment will give him the best chance of full remission. Once he is clear on that, he could perhaps start to weigh up the pros and cons and decide whether he is happy with the associated risks.


 


One question you could ask the surgeon is what he means by 'back to normal'? Does he mean that 95% of his patients can get a natural erection by 12 months - if so, he may be a bit of a miracle worker as that is way above any UK reported outcomes data. Or does he mean that 95% of his patients can get an erection with the help of a pump or drugs? Important not to set your expectations too high - if it turns out to be better than expected, then fantastic all round. 

Edited by member 03 Jun 2016 at 21:56  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Posted 03 Jun 2016 at 18:01

Hello again Carmel.

My husband had the permanent seed Brachytherapy and if you are interested you can click on my profile for info.

I would just point out that he was 72/3 when he had the procedure.

I believe there is a thought that the younger the person the less likely they are to be offered Permanent Seed Brachy, because, like all of the treatments, there are possible long term side effects, in this case bowel problems may occur further down the line. The younger you are the longer you would have to live with this side effect. That could be said about all of the treatments of course.

The older you are the more likely you are to develop these problems anyway so it was a risk worth taking for us.

At 55 has your husband actually been offered Seed Brachy?

There are a few others on here that had SB and I'm sure they will be along to advise you.

Just don't rush into anything is the only positive advise I would give.

Best Wishes in whatever route you take

We can't control the winds - but we can adjust our sails
User
Posted 03 Jun 2016 at 18:19
Hi Carmel,
I can't comment on brachytherapy, but I had RRP on the 4th May and came home the day after. I'm 67 but was dry as soon as the catheter was removed although not everyone is. Apart from continuing tenderness I've done well. Your OH is younger so will dwell on the ED issues longer, if there is nerve sparing the chances are greater. I chose the op to have a chance to get things out of the way quickly - I Don' t know yet whether it has worked, my foolow up meeting is in 3 weeks.
Good luck with whatever you choose.
User
Posted 03 Jun 2016 at 18:20
Hi again,

Yes it was one of the options, they gave us four. Active Surveillance, P. Seed brach, the op & radiotherapy. I didn't know about the bowel problems so that's good to know. I think the surgeon was leaning more to active surveillance or the op, a nurse gave us the pack. I have a vague recollection that the surgeon said something about radiotherapy being used more in older men than 55 so he seemed as tho he was dismissing it but I think he can have it if he chooses.

Thanks again for your help. x
User
Posted 03 Jun 2016 at 18:23
Oh that's really good to know. Thank you. Good luck st your follow up.
User
Posted 03 Jun 2016 at 19:54

My husband had Active surveillance for just on a year before he had to make a decision and his Gleason was 3+4 so not quite as good as your husband's.

Mine was adamant he would NOT have the op and was quite happy with the AS. It's not as if you are abandoned. You are in fact well looked after with regular blood tests, MRI and check ups, plus we also had, at that time a nurse specialist at the end of the phone.

Once we had decided on the Brachy however, we lost the nurse specialist - they just lost interest !!

Not everyone can cope with the knowledge that they have a cancer growing inside them though. At 3+3 it would give you breathing space to make an informed decision but like any of the treatments the choice has to be yours

We can't control the winds - but we can adjust our sails
User
Posted 03 Jun 2016 at 21:52

My husband was 50 at diagnosis and chose RP - it was intended to be full nerve-sparing although in the end he kept all of the nerves on one side and half the nerves on the other. You might find this helpful http://community.prostatecanceruk.org/posts/t9839-One-wife-s-story-of-ED#post119001


Brachy was his first choice but our hospital doesn't offer it to men under the age of 55 - it seems though that other hospital regions do offer it to younger men. Like everything with this disease, it is a postcode lottery.


My dad had full nerve-sparing at the age of 62 and has been impotent ever since but uses injections successfully. My father-in-law refused treatment because he didn't want ED and lived for only 4 years (we realised too late that he didn't get proper AS in line with the NICE guidance). As is often said, dead men don't get erections and your husband's big question should be which treatment will give him the best chance of full remission. Once he is clear on that, he could perhaps start to weigh up the pros and cons and decide whether he is happy with the associated risks.


 


One question you could ask the surgeon is what he means by 'back to normal'? Does he mean that 95% of his patients can get a natural erection by 12 months - if so, he may be a bit of a miracle worker as that is way above any UK reported outcomes data. Or does he mean that 95% of his patients can get an erection with the help of a pump or drugs? Important not to set your expectations too high - if it turns out to be better than expected, then fantastic all round. 

Edited by member 03 Jun 2016 at 21:56  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 04 Jun 2016 at 00:33
Lynn, thank you. x
User
Posted 04 Jun 2016 at 06:02
Hi Dave...

Adding to the mix...64 rs old I was Gleason 3+3 and had options of AS, RP or HT/RT. My prostate was too big for most other available treatments (oncologists advice).

I took 3 months to choose and as my PSA was then rising and I am not the sort to do AS I chose RP to "get rid of it".

I had open surgery in March.. my consultant surgeon prefers it as he says he gets better nerve sparing results than robotic.

Post ops were Gleason 3+4 all contained, no cancer evident at margins. Both sides nerves spared.

Bladder control and continence after catheter removal pretty good with only minimal leakage when active (hill walking etc!) and very soon after I was dry throughout night and day.. although I do have small leaks very occassionly so still wearing small pad for confidence..

10 weeks on and ED beginning to be overcome with help of viagra.

Blood test due soon and will then have 1st PSA reading post op. (keep your fingers crossed for me!)

As others have said choice is very personal... but I dont think I would choose HT/RT given the choice again.

I should add that I was in the fortunate position of being private patient through work provided insurance and so had choice of hospital and consultants. Whether that has a bearing on results.. who knows?

Good luck in making your choice.

KRO...
User
Posted 04 Jun 2016 at 11:14
Hi Carmel

Have you considered other treatments such as HIFU. The reason I say this is that not all hospitals mention treatments that are not carried out at their particular hospital. But whatever treatment you choose I wish you well.

Roy
User
Posted 04 Jun 2016 at 22:26
Hi. I just thought I'd say my other half had brachytherapy aged 57. Though he wasn't really offered prostate removal. It wasn't discussed. He had a few problems after treatment from the radiation. Psa is now 0.6 you can click on my profile for more info. The decision is the hardest part. All thr best.
User
Posted 04 Jun 2016 at 22:39
Hi Roy,

We are looking into HIFU. It seems a sensible option at this stage. Thanks for advice.

Carmel
User
Posted 14 Jul 2016 at 08:39
Hi Dave
I was 55 when diagnosed.Gleason 3+3 and contained.Reccomended to have treatment as cancer in both sides.
The advice from people on here was invaluable.

I looked at all the options but must admit immediately ruled out surgery.
Was more worried about the side effects than the operation.
So concentrated on external beam and brachytherapy

One consultant said he would opt for the external beam because he wouldn't fancy the seeds of brachytherapy being left inside permanently
The other consultant (female)said if was her partner would advise brachytherapy
Now I must admit even before discussing brachytherapy this was the treatment i was leaning towards

Was told by consultant I was an ideal candidate for brachytherapy even though my prostate was enlarged.
So on 20th January had seeds inserted.Have had no regrets

Been very lucky had very few side effects up to yet.Accepted could be trouble further down the line but this is the same for any of the treatments
So in a long winded way I am trying to say choose the treatment you think would suit you.Dont look back and wish you had chosen a different path
You can only make the decision which is best for you at the time.Just like every other decision in life
Let's be honest none of us would choose to be on here having this horrible disease
Good luck and hope everything goes well

Garry
 
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