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what choice to make

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User
Posted 09 Nov 2020 at 21:42

hi 64 years old and i have never been so mixed up in my life just been diagnosed. psa 17.6 T3 gleason score 4+3  luckily bone scan negative, told it might not be possible to remove the whole of the prostrate surgically so it might be a question of having surgery and then radiotherapy plus hrt or go straight for radiotherapy and hrt for 2 years just to complicate matters 2 years ago had a burst appendix leaving me with a 10 inch scar and part of my bowel removed and the waiting list for surgery is about 10 months  my heads about to explode!!!!! any advice would be welcome cheers

User
Posted 09 Nov 2020 at 23:59
I assume your urology department has said it is up to you to choose? In the circumstances you have outlined here, I think if you were my dad I would be encouraging you to go straight for HT with radiotherapy for the following reasons:

- they have already advised that the surgery might not get it all

- the wait for surgery seems excessive (presumably they are saying this is down to Covid?)

- if they are concerned about getting all the cancer out, they may also be proposing that the op will be non-nerve sparing which means that erections may only be possible with injections or a vacuum pump (have they said whether the op would be nerve sparing?).

- the appendectomy scar may mean that the surgery has to be open rather than keyhole, in which case you would be in hospital for longer and the recovery is slower (have they said that keyhole is possible?)

- if you opt for RT / HT the hormone treatment can start almost immediately so the cancer is controlled and cannot spread

- it is normal to be on HT for 3 - 6 months before the RT starts, by which time we can all hope that Covid risk is much lower

The downside is that you have already had some of your bowel removed - only an oncologist can tell you what implications that would have on your suitability for RT - have you seen an oncologist yet?

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

User
Posted 10 Nov 2020 at 03:55

I would concur with Matron.

I and three friends all had prostatectomy surgery around two years ago, and all three of them had to have adjuvant HT and RT which they could have had in the first place, and skipped the surgery. All are doing well now.

A ten-month wait for cancer surgery is a national scandal! Where do you live? My own surgeon had his clinic up to 80% capacity during the height of the last lockdown. Something must be seriously wrong at your hospital.

Blame everything on the plague.

Hope you get treated soon, and best of luck for the future.

Cheers, John.

Edited by member 10 Nov 2020 at 03:56  | Reason: Not specified

User
Posted 10 Nov 2020 at 09:06

You can be referred somewhere else for the op. I think that would normally need to be done by your GP, but you could ask your consultant. During the last COVID wave, a friend switched from The Lister, to Southampton I think it was, who could do the op within a week at that time. He had a relative working there, which didn't get him any faster access, but just the knowledge they had no queue. His aftercare is all back at his local district general hospital.

User
Posted 10 Nov 2020 at 16:41
I switched my prostatectomy from Coventry to Guildford because I had been recommended to a particularly good NHS surgeon there.

I was there for two nights and if I had lived closer I could have gone home after one night. Catheter removal and after-care was all done on the NHS in Coventry.

I did go to Guildford once again for the post-operative results consultation.

If you do decide on surgery don’t wait ten months!

Cheers, John.

User
Posted 10 Nov 2020 at 17:55
Covid delayed our op earlier on in the year. From the time all the scans etc were completed we had to wait about 8 weeks before he went in. During that time he had HT to stop it in its tracks. We did have the choice of moving further afield but we wanted to stay with our surgeon who has a high volume of ops and the majority of his work is with T3.

Those 8 weeks were agitating enough, I can't imagine waiting 10 months!

User
Posted 10 Nov 2020 at 17:59
Given a choice between surgery and RT or just RT I'd go for the RT, if your existing bowel condition permits. Why have two sets of side-effects rather than just one?

Best wishes,

Chris

User
Posted 10 Nov 2020 at 21:07

Originally Posted by: Online Community Member
Given a choice between surgery and RT or just RT I'd go for the RT, if your existing bowel condition permits. Why have two sets of side-effects rather than just one?

Best wishes,

Chris

The counter to this is that if you have your Prostate removed, it is not there for the cancer to regrow in, which can happen with RT.  My cancer regrew within the Prostate after RT and some cancer cells can be radio resistant.  With the benefit of hindsight, I wish I had had the Prostatectomy backed up by the RT.  However, had I gone this route, I would probably be wondering now whether only RT would have done the job.  It really comes down to whether you want to possibly improve your chance of a successful  outcome at the risk of having both radical treatments with potential additional side effects.

Barry
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User
Posted 09 Nov 2020 at 23:59
I assume your urology department has said it is up to you to choose? In the circumstances you have outlined here, I think if you were my dad I would be encouraging you to go straight for HT with radiotherapy for the following reasons:

- they have already advised that the surgery might not get it all

- the wait for surgery seems excessive (presumably they are saying this is down to Covid?)

- if they are concerned about getting all the cancer out, they may also be proposing that the op will be non-nerve sparing which means that erections may only be possible with injections or a vacuum pump (have they said whether the op would be nerve sparing?).

- the appendectomy scar may mean that the surgery has to be open rather than keyhole, in which case you would be in hospital for longer and the recovery is slower (have they said that keyhole is possible?)

- if you opt for RT / HT the hormone treatment can start almost immediately so the cancer is controlled and cannot spread

- it is normal to be on HT for 3 - 6 months before the RT starts, by which time we can all hope that Covid risk is much lower

The downside is that you have already had some of your bowel removed - only an oncologist can tell you what implications that would have on your suitability for RT - have you seen an oncologist yet?

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

User
Posted 10 Nov 2020 at 03:55

I would concur with Matron.

I and three friends all had prostatectomy surgery around two years ago, and all three of them had to have adjuvant HT and RT which they could have had in the first place, and skipped the surgery. All are doing well now.

A ten-month wait for cancer surgery is a national scandal! Where do you live? My own surgeon had his clinic up to 80% capacity during the height of the last lockdown. Something must be seriously wrong at your hospital.

Blame everything on the plague.

Hope you get treated soon, and best of luck for the future.

Cheers, John.

Edited by member 10 Nov 2020 at 03:56  | Reason: Not specified

User
Posted 10 Nov 2020 at 08:38

 liverpool  you might have heard of the problems associated with the new hospital supposed to be completed 2017 i think. old hospiital falling apart and then you have covid will be seeing the oncologist on friday hopefully things will be a bit clearer then i think the op will be nerve sparing on one side at least cheers

User
Posted 10 Nov 2020 at 09:06

You can be referred somewhere else for the op. I think that would normally need to be done by your GP, but you could ask your consultant. During the last COVID wave, a friend switched from The Lister, to Southampton I think it was, who could do the op within a week at that time. He had a relative working there, which didn't get him any faster access, but just the knowledge they had no queue. His aftercare is all back at his local district general hospital.

User
Posted 10 Nov 2020 at 16:41
I switched my prostatectomy from Coventry to Guildford because I had been recommended to a particularly good NHS surgeon there.

I was there for two nights and if I had lived closer I could have gone home after one night. Catheter removal and after-care was all done on the NHS in Coventry.

I did go to Guildford once again for the post-operative results consultation.

If you do decide on surgery don’t wait ten months!

Cheers, John.

User
Posted 10 Nov 2020 at 17:55
Covid delayed our op earlier on in the year. From the time all the scans etc were completed we had to wait about 8 weeks before he went in. During that time he had HT to stop it in its tracks. We did have the choice of moving further afield but we wanted to stay with our surgeon who has a high volume of ops and the majority of his work is with T3.

Those 8 weeks were agitating enough, I can't imagine waiting 10 months!

User
Posted 10 Nov 2020 at 17:59
Given a choice between surgery and RT or just RT I'd go for the RT, if your existing bowel condition permits. Why have two sets of side-effects rather than just one?

Best wishes,

Chris

User
Posted 10 Nov 2020 at 21:07

Originally Posted by: Online Community Member
Given a choice between surgery and RT or just RT I'd go for the RT, if your existing bowel condition permits. Why have two sets of side-effects rather than just one?

Best wishes,

Chris

The counter to this is that if you have your Prostate removed, it is not there for the cancer to regrow in, which can happen with RT.  My cancer regrew within the Prostate after RT and some cancer cells can be radio resistant.  With the benefit of hindsight, I wish I had had the Prostatectomy backed up by the RT.  However, had I gone this route, I would probably be wondering now whether only RT would have done the job.  It really comes down to whether you want to possibly improve your chance of a successful  outcome at the risk of having both radical treatments with potential additional side effects.

Barry
 
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