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56 and struggling to choose a treatment

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User
Posted 04 May 2023 at 14:08

About 8 weeks ago I was diagnosed with prostate cancer after a PSA Test came back 12, I was sent for a scan and the biopsies.


Gleason 3+4 adenocarcinoma of the prostate (maximum 5-10% pattern 4, 11/19 cores involved, PSA 12 at diagnoses)


MRI scan showing PIRIDS 5 Lesion with PSA -D 0.26


They recommended treatment rather than surveillance because of the number of cores that were positive and a PSA above 10and because of my young age (56) I would just be deferring treatment to a later day


They do not think low dose rate brachytherapy is the right treatment given my PSA is above 10


Hence surgery or combined Beam Radio and Hormone


The Professor [Doctors name removed by moderator] says with nerve sparing procedure I stand a 30-50% chance of retaining erections, 1 in 5 potential for stress incontinence post op and 1 in 250-300 of severe incontinence.


I am struggling to choose as I have to work front of house on a bar I own and do not know best option under the circumstances.


I have been to the local group meeting but most are in 60s/70s and need to see how my age group have faired with either treatment.


How successful is the nerve sparing surgery? And erectile activity after it?


All advise is appreciated


 

Edited by moderator 04 May 2023 at 19:14  | Reason: Not specified

User
Posted 04 May 2023 at 20:33

Hi Paul,


I'm sorry that you find yourself here.


I am 67, so considerably older than you.  Some of my experiences may not relate to your situation.


  I was diagnosed 12 months ago.    I had a PSA of 13 (so slightly higher than yours) and, after the biopsy, I was given an initial diagnosis of T2, with a Gleason score of 3+4.  I too was refused Brachytherapy.  I was offered Surgery or Radiotherapy with Hormone Therapy.  I might have had the Radiotherapy on its own but I  was worried about the side effects of the Hormone Therapy on my mood and libido.  They did not recommend Radiotherapy on its own, so I opted for Surgery in the end.


After removal of the prostate, the histology report indicated that my Gleason score was actually 4+3, with T3a, so the cancer was more aggressive than they first thought.  So, one advantage of the surgery is that you get a more accurate diagnosis than can be achieved with just a biopsy.


On the negative side, I experienced very severe incontininece for the first few months.  (I am told that my level of incontinence is very unusual).  I am now 11 months post-surgery and my continence has improved, but that still means I'm using 2-3 pads per day. 


As far a sexual functioning is concerned, I still have zero erectile functioning, even though my surgeon advised that they had saved "most" of my nerves on both sides.  I have been prescribed Cialis (Tadalafil) and a Vacuum Pump and Alprostadil injections.  I've reduced my use of the injections recently as I find them unreliable at low doses but give painful erections at higher doses.  (There is an alternative to Alprostadil injections, called Invicorp, which I am advised has few, if any, side effects and works just as well).


I don't know in which part of the country you are, but if you opt for Radiotherapy, that will usually entail daily visits to the hospital for the duration of treatment.  That can involve a lot of travel.  Given that you are self-employed and need to be at your bar, will that cause logistical problems?   The radiotherapy's adverse effects usually develop much more slowly, so one advantage is that you would have more time to adjust to any changes.


The surgery option usually involves just one night in hospital, although you will have a catheter for about a week or so and that can make mobilising a little more difficult [and you would probably be more conspicuous to your customers :-)].  Once the catheter is removed, you will feel a lot more comfortable.  If you are incontinent (and be assured, not everyone is), the incontinence pads are fairly inconspicuous and people won't know that you're wearing them.   But they're an inconvenience (and I find them humilating).  


Good luck with whatever you decide.


Best wishes,


JedSee.


 

User
Posted 04 May 2023 at 20:37

I was 53 at diagnosis, my cancer was more aggressive than yours and surgery was ruled out.


I had 2 years of HT, HDR brachy and EBRT. Now five years down the line I have a PSA of 0.1 and everything works, though little blue tablet is of some use.


Treatment for you will be inevitable, but I'd always recommend delaying treatment if it is safe to do so; why start suffering any side effects now when you could suffer them in a few years instead. With about 50% of your prostate having cancer I doubt it is safe to wait.


With modern RT and hopefully no more than a year of HT, I don't think you would have any problems living a normal life.


The advantage of surgery is that you won't have a prostate which may develop another cancer in the next 20 years or so. You have to weigh that against the risk of unpleasant side effects for the rest of your life.

Dave

User
Posted 04 May 2023 at 20:42
I was diagnosed at 55, so a year younger than you. In my case HT/RT was highly recommended, so that's the path I went down. Six months' HT, then six and a half weeks of RT, followed by another year of HT. I found it all pretty tolerable.

Best wishes,

Chris
User
Posted 04 May 2023 at 20:42
When my PSA went over 10 my Urologist recommended Brachytherapy LDR. My local Trust didnt do Brachytherapy so my urologist found me a hospital that would do it and I travelled out of area. I am 80 so age may be a factor. Brachytherapy seems to have worked for me. John

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2


Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23  <0.01

User
Posted 04 May 2023 at 21:25
Malcolm,

The answer is largely historical. Just about all hospitals that treat PCa have been doing it for many years, so have the equipment, experience and skills to do Prostatectomy and EBRT. The da Vinci Robot is expensive and requires additional training and expertise to operate it. Having invested so much in terms of human resources and expense, this has to be justified and Robotic seems to be becoming ever more in use. (Open surgery is still favoured by some surgeons or felt to be a better option in some cases). Results have been analysed over many years.

EBRT treatment has also been available for many years with ongoing refinements making it more reliable and effective. So in many cases upgrading EBRT remains the option most hospitals offer as an alternative to surgery. These two options offer treatment for most patients.

Brachytherapy (both high and low dose) is an addition an increasing number of hospitals offer. Then there are other forms of RT that are newer but many hospitals don't have the resources to offer. Focal Therapy is presently only available at very few hospitals. Some argue that it is experimental and requires additional cost and expertise and why should they become involved in this when either Surgery or EBRT or both will do the job. Then there is said to be a reluctance on the part of surgeons who have worked hard to do an intricate and demanding operation and would not would want to change to do Focal Therapy. There are only 2 NHS hospitals, The Christie in Manchester and UCHL in London that have Proton Beam as this is an expensive facility to install and operate. So, yes, treatment can vary quite considerably between hospitals.
Barry
User
Posted 04 May 2023 at 22:47
Our teaching hospital, which is a regional centre of excellence for cancer and one of the big research centres for urological cancers, offers brachytherapy but not to men with PSA over 10 or with pre-existing urinary problems

Erectile function recovery is a bit of pot luck and it isn't the case that young men always recover better than old men. NHS data says about 90% of men can get an erection 12 months post op but many of those (about 60%) can only do so using mechanical or chemical assistance. Quite a high proportion of men can get some kind of erection at 12 months but it may not be hard enough for penetrative sex. Your surgeon seems to be giving you a realistic 'heads up' on the possible implications of surgery.

In your situation, it may be that radiotherapy is absolutely the right way to go - the op will mean at least 6 to 12 weeks off work and longer before you can lift or change barrels, etc whereas you should be able to work throughout radiotherapy.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 04 May 2023 at 23:08

Paul,


Some of your diagnosis is missing, such as staging (T2b, T3a, whatever). That's useful to know when suggesting what to think about treatments. You are not constrained to have just the treatments offered at your current hospital, you can ask to be referred to any other NHS hospital in England, although that may mean more traveling. However, hospitals don't tend to offer treatments they don't do, because they have no expert there to say you're suitable for that treatment.


Regarding focal therapy, it depends where the cancer is in your prostate. 11/19 cores if evenly distributed doesn't sound like focal disease, but the cores are probably concentrated in the lesion(s) (damaged tissue) shown up in the MRI scan, and it may be that outside of that, there wasn't any cancer found.


I'm not aware either of the proton beam systems is treating prostates, so that's probably not available in the UK. The results when it was (in different private hospitals) didn't seem to live up to expectations.


If you are interested in Brachytherapy, you do need to ask someone who does it. Consultants commenting on procedures they don't do is not always reliable advice.


I was 56 at diagnosis, and 57 when treated. I initially went in naively saying I wanted it out. However, in my case, they thought there wouldn't be any nerve sparing which concerned me, and they thought I had a significant chance of needing radiotherapy afterwards. (30% of prostatectomy patients need radiotherapy afterwards, but my chance was much higher than 30%.) So they recommended radiotherapy only (plus hormone therapy), without adding in the side effects of prostatectomy too. That was done 3½ years ago (same treatment as Barry), and I now almost wouldn't know anything had been done, and everything still works just like it did before (except dry orgasms, which I actually find quite convenient). There are no guarantees of course. I do have some minor painless rectal bleeding, but no incontinence and it has no impact on my quality of life, so I don't care about that.


In terms of how disabling the treatment was, I wasn't working anyway, but I cycled every day all the way through my external beam radiotherapy (which probably helped me avoid any fatigue and stay healthy on hormone therapy). The HDR Brachytherapy was 3 days after the external beam radiotherapy finished, and I would have taken perhaps 5 days off work for that (2 for brachy and 3 days afterwards just to be safe), but I was back doing a long cycle ride 5 days after the brachytherapy. In retrospect, I wouldn't change anything.

User
Posted 06 May 2023 at 12:33

Hi Paul 


A traumatic time indeed.


I went the surgical route: Retzius sparing robotic assisted radical prostatectomy + neurosafe (Da Vinci Xi) at London Guys cancer centre in the trusty hands of the Prof Whocannotbenamedhere. Never looked back and fantastic outcome. My cancer was more extensive than first shown on 3T mri but caught just in time while localised. 


find a high volume surgeon with good stats is a good place to start. Check their data as high volume normally equates to >100 procedures a year. Think my prof was doing several times that so it gave me extra reassurance to have a experienced  pair of hand in such a critical area.

User
Posted 26 Jun 2023 at 17:45

Hi Paul,


if you go down the HT/RT route you have to consider the side-effects of the HT, which in my case and others I know in my Maggies Group are far, far worse than those from the RT. My RT finished early May and so far any minor side effects I DID have have now gone. However the side effects from the HT can severely affect your QOL…not everyone gets any/all of the side effects but they are NOT nice. And, youve got 2-3 years of it!


I can’t advise you on which route to take but if I was given the option, I would have chosen surgery even though I am a lot older than you.


Have you had the chance to talk to others who had surgery in your support group? They will be able to give you first hand experience.


You’ll certainly feel a lot better when youve made the decision.


all the best,


Derek

User
Posted 27 Jun 2023 at 09:01

Hi PauL,


Sorry to hear about your diagnosis. As the Surgeon said to me when he saw me before the Op, ‘Ah, bummer’....I think because I am a young looking 52 yr old (apparently).


So I had Gleason 8 after biopsy with Seminal vesicles cancerous as well. After a PETSCAN one lymph node lit up. But not sure what it was at that time. 


after consultation with a surgeon and an oncologist, and their internal meetings everyone including oncologist said surgery best option.


Main reasons being: 


i am young, have an aggressive cancer (upgraded to 9 after surgery), and whilst only 50% of negative margins due to positioning of the tumour further treatment via HT and RT is easier after RARP. Apparently less easy the other way around. The lymph node was a side issue as it turned out as removed it in surgery and was negative.


am 3 weeks today post op. Occasional dribble incontinence, and going to start ED pills tomorrow.


i wanted the cancer out, rather than spend the rest of my life with PSA levels and reoccurrence plaguing me. Don’t get me wrong I may still end up with further treatment (and probably will TBH), but the ‘mother ship’ as the surgeon called it is gone.


psychologically for me that was important.


i will deal with the side effects.


 

User
Posted 27 Jun 2023 at 09:03

Sorry pressed the wrong button......so advice is take your time to think about treatment. Nerve sparing helpsregarding ED (I had one removed but one apparently intact) and if you go down surgery see if you can somehow get hold of the best surgeon possible. Mine was amazing. Good luck. 

User
Posted 27 Jun 2023 at 10:11

I was 56 when I had surgery 2 years ago.  All my numbers and blurb are in my profile.  I took advice from a robotic surgery guy, an open surgery guy and a radiotherapy guy. Robotic guy said it was up to me, open guy recommended himself and radio guy said "go for surgery and keep me in reserve if you need salvage".


Robotic surgery it was (incremental nerve-sparing). T3a, negative margins, extra-prostatic extrension 2 mm, clear seminal vesicles, extra-prostatic perineural invasion present.


Two years on my PSA is still <0.01 ng/mL. Incontinence was an issue for 5-6 weeks post-op and now I'd say I'm 99% continent (fatigue, alcohol and caffeine can lead to some alarming moments).  ED almost total - a lot of effort can achieve a very short-lived, half-hearted "semi".


Work insisted I took 12 weeks off from what is a sedentary job. Apart from the ED and rare minor (literally drips) leak I'm now in good physical shape. Walked 190 odd miles coast to coast last year to raise money for PCUK with no problems.


Hope it goes well for you whichever course you choose.


Upkeep


 

Edited by member 27 Jun 2023 at 10:12  | Reason: I'm rotten at typing

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User
Posted 04 May 2023 at 19:30

Hi Paul,


I'm not qualified to advise but sounds like your Dr is a surgeon who perhaps isn't putting forward a full range of oncology treatments.   It might be preferable to ask to speak to an oncologist.   It could be they don't perform or offer brachytherapy.  Sometimes you have to push to be able to see others.   Although as you say it might not be a good idea.


I think I've been taken over by an oncologist I watch on YouTube because I used to think surgery was generally better and they used to say Robotic treatment is better than the older manual controlled keyhole surgery.   Yet there are voices that say outcomes aren't that much better with robots. The oncologist on YouTube claims improvements in RadioTherapy make it much more precise and it can radiate places that surgery doesn't get to and avoid places old systems used to occasionally damage.


I also think secondary effects are less with Radiotherapy although there is a risk that the effects only appear longer term and as you're quite young that might mean in your normal lifespan.


Also you might not want to use hormones although it's probably only for a few months so even if you don't like them it shouldn't be so bad.


About incontinence, it tends to get better until it's gone and some people do Kegel exercises which help, even before the op.  You can work wearing pads which you'll probably need for at least 2 months although I wore them as a precaution for longer.  It largely depends on the skill of your surgeon although it can be just bad luck.


On ED that similarly is based on skill and luck.  I think very few get as strong an erection after the op although there are things to help, like drugs and pumps.  It's better to start early they say but not to overdo anything while it's healing. 


Anyway that's a starter and there will likely be other replies.


You might also change your username as people tend not to use their real names.


Regards Peter

Edited by member 04 May 2023 at 19:40  | Reason: Add about incontinence and ED.

User
Posted 04 May 2023 at 20:16

Thanks Peter,


The Oncologist didn't think brachytherapy would be strong enough to treat me as the PSA was quite high and the other results. 


I enquired about high intensity ultrasound and cryotherapy but the oncologist said Christie's do not offer these, nor do the NHS Trust as do not think that there is enough evidence that they actually work.


So I was down to 2 treatment methods, 12 month hormone therapy and a month of beam radiotherapy,  or Surgery. 

User
Posted 04 May 2023 at 20:22
Why do different trusts offer different treatments ? I would think it would be the same throughout the nhs ?
User
Posted 04 May 2023 at 20:33

Hi Paul,


I'm sorry that you find yourself here.


I am 67, so considerably older than you.  Some of my experiences may not relate to your situation.


  I was diagnosed 12 months ago.    I had a PSA of 13 (so slightly higher than yours) and, after the biopsy, I was given an initial diagnosis of T2, with a Gleason score of 3+4.  I too was refused Brachytherapy.  I was offered Surgery or Radiotherapy with Hormone Therapy.  I might have had the Radiotherapy on its own but I  was worried about the side effects of the Hormone Therapy on my mood and libido.  They did not recommend Radiotherapy on its own, so I opted for Surgery in the end.


After removal of the prostate, the histology report indicated that my Gleason score was actually 4+3, with T3a, so the cancer was more aggressive than they first thought.  So, one advantage of the surgery is that you get a more accurate diagnosis than can be achieved with just a biopsy.


On the negative side, I experienced very severe incontininece for the first few months.  (I am told that my level of incontinence is very unusual).  I am now 11 months post-surgery and my continence has improved, but that still means I'm using 2-3 pads per day. 


As far a sexual functioning is concerned, I still have zero erectile functioning, even though my surgeon advised that they had saved "most" of my nerves on both sides.  I have been prescribed Cialis (Tadalafil) and a Vacuum Pump and Alprostadil injections.  I've reduced my use of the injections recently as I find them unreliable at low doses but give painful erections at higher doses.  (There is an alternative to Alprostadil injections, called Invicorp, which I am advised has few, if any, side effects and works just as well).


I don't know in which part of the country you are, but if you opt for Radiotherapy, that will usually entail daily visits to the hospital for the duration of treatment.  That can involve a lot of travel.  Given that you are self-employed and need to be at your bar, will that cause logistical problems?   The radiotherapy's adverse effects usually develop much more slowly, so one advantage is that you would have more time to adjust to any changes.


The surgery option usually involves just one night in hospital, although you will have a catheter for about a week or so and that can make mobilising a little more difficult [and you would probably be more conspicuous to your customers :-)].  Once the catheter is removed, you will feel a lot more comfortable.  If you are incontinent (and be assured, not everyone is), the incontinence pads are fairly inconspicuous and people won't know that you're wearing them.   But they're an inconvenience (and I find them humilating).  


Good luck with whatever you decide.


Best wishes,


JedSee.


 

User
Posted 04 May 2023 at 20:37

I was 53 at diagnosis, my cancer was more aggressive than yours and surgery was ruled out.


I had 2 years of HT, HDR brachy and EBRT. Now five years down the line I have a PSA of 0.1 and everything works, though little blue tablet is of some use.


Treatment for you will be inevitable, but I'd always recommend delaying treatment if it is safe to do so; why start suffering any side effects now when you could suffer them in a few years instead. With about 50% of your prostate having cancer I doubt it is safe to wait.


With modern RT and hopefully no more than a year of HT, I don't think you would have any problems living a normal life.


The advantage of surgery is that you won't have a prostate which may develop another cancer in the next 20 years or so. You have to weigh that against the risk of unpleasant side effects for the rest of your life.

Dave

User
Posted 04 May 2023 at 20:42
I was diagnosed at 55, so a year younger than you. In my case HT/RT was highly recommended, so that's the path I went down. Six months' HT, then six and a half weeks of RT, followed by another year of HT. I found it all pretty tolerable.

Best wishes,

Chris
User
Posted 04 May 2023 at 20:42
When my PSA went over 10 my Urologist recommended Brachytherapy LDR. My local Trust didnt do Brachytherapy so my urologist found me a hospital that would do it and I travelled out of area. I am 80 so age may be a factor. Brachytherapy seems to have worked for me. John

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2


Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23  <0.01

User
Posted 04 May 2023 at 21:25
Malcolm,

The answer is largely historical. Just about all hospitals that treat PCa have been doing it for many years, so have the equipment, experience and skills to do Prostatectomy and EBRT. The da Vinci Robot is expensive and requires additional training and expertise to operate it. Having invested so much in terms of human resources and expense, this has to be justified and Robotic seems to be becoming ever more in use. (Open surgery is still favoured by some surgeons or felt to be a better option in some cases). Results have been analysed over many years.

EBRT treatment has also been available for many years with ongoing refinements making it more reliable and effective. So in many cases upgrading EBRT remains the option most hospitals offer as an alternative to surgery. These two options offer treatment for most patients.

Brachytherapy (both high and low dose) is an addition an increasing number of hospitals offer. Then there are other forms of RT that are newer but many hospitals don't have the resources to offer. Focal Therapy is presently only available at very few hospitals. Some argue that it is experimental and requires additional cost and expertise and why should they become involved in this when either Surgery or EBRT or both will do the job. Then there is said to be a reluctance on the part of surgeons who have worked hard to do an intricate and demanding operation and would not would want to change to do Focal Therapy. There are only 2 NHS hospitals, The Christie in Manchester and UCHL in London that have Proton Beam as this is an expensive facility to install and operate. So, yes, treatment can vary quite considerably between hospitals.
Barry
User
Posted 04 May 2023 at 22:47
Our teaching hospital, which is a regional centre of excellence for cancer and one of the big research centres for urological cancers, offers brachytherapy but not to men with PSA over 10 or with pre-existing urinary problems

Erectile function recovery is a bit of pot luck and it isn't the case that young men always recover better than old men. NHS data says about 90% of men can get an erection 12 months post op but many of those (about 60%) can only do so using mechanical or chemical assistance. Quite a high proportion of men can get some kind of erection at 12 months but it may not be hard enough for penetrative sex. Your surgeon seems to be giving you a realistic 'heads up' on the possible implications of surgery.

In your situation, it may be that radiotherapy is absolutely the right way to go - the op will mean at least 6 to 12 weeks off work and longer before you can lift or change barrels, etc whereas you should be able to work throughout radiotherapy.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 04 May 2023 at 23:08

Paul,


Some of your diagnosis is missing, such as staging (T2b, T3a, whatever). That's useful to know when suggesting what to think about treatments. You are not constrained to have just the treatments offered at your current hospital, you can ask to be referred to any other NHS hospital in England, although that may mean more traveling. However, hospitals don't tend to offer treatments they don't do, because they have no expert there to say you're suitable for that treatment.


Regarding focal therapy, it depends where the cancer is in your prostate. 11/19 cores if evenly distributed doesn't sound like focal disease, but the cores are probably concentrated in the lesion(s) (damaged tissue) shown up in the MRI scan, and it may be that outside of that, there wasn't any cancer found.


I'm not aware either of the proton beam systems is treating prostates, so that's probably not available in the UK. The results when it was (in different private hospitals) didn't seem to live up to expectations.


If you are interested in Brachytherapy, you do need to ask someone who does it. Consultants commenting on procedures they don't do is not always reliable advice.


I was 56 at diagnosis, and 57 when treated. I initially went in naively saying I wanted it out. However, in my case, they thought there wouldn't be any nerve sparing which concerned me, and they thought I had a significant chance of needing radiotherapy afterwards. (30% of prostatectomy patients need radiotherapy afterwards, but my chance was much higher than 30%.) So they recommended radiotherapy only (plus hormone therapy), without adding in the side effects of prostatectomy too. That was done 3½ years ago (same treatment as Barry), and I now almost wouldn't know anything had been done, and everything still works just like it did before (except dry orgasms, which I actually find quite convenient). There are no guarantees of course. I do have some minor painless rectal bleeding, but no incontinence and it has no impact on my quality of life, so I don't care about that.


In terms of how disabling the treatment was, I wasn't working anyway, but I cycled every day all the way through my external beam radiotherapy (which probably helped me avoid any fatigue and stay healthy on hormone therapy). The HDR Brachytherapy was 3 days after the external beam radiotherapy finished, and I would have taken perhaps 5 days off work for that (2 for brachy and 3 days afterwards just to be safe), but I was back doing a long cycle ride 5 days after the brachytherapy. In retrospect, I wouldn't change anything.

User
Posted 05 May 2023 at 13:26
User
Posted 06 May 2023 at 12:33

Hi Paul 


A traumatic time indeed.


I went the surgical route: Retzius sparing robotic assisted radical prostatectomy + neurosafe (Da Vinci Xi) at London Guys cancer centre in the trusty hands of the Prof Whocannotbenamedhere. Never looked back and fantastic outcome. My cancer was more extensive than first shown on 3T mri but caught just in time while localised. 


find a high volume surgeon with good stats is a good place to start. Check their data as high volume normally equates to >100 procedures a year. Think my prof was doing several times that so it gave me extra reassurance to have a experienced  pair of hand in such a critical area.

User
Posted 26 Jun 2023 at 13:43

Hi Malcolm4,


I went for another meeting with the Surgeon and got a different guy who was very abrupt etc it felt like he thought we were wasting his time and when I wanted reassurance to opt for the surgery he put me back to undecided.


But back to what you said about consistency around the NHS, what this surgeon told myself regarding erectile dysfunction after surgery and what my friend who lives in Wales was told, are total opposites.

User
Posted 26 Jun 2023 at 13:55

Hi Dave64diag2018,


I was told about the risk of developing another cancer in 10-15yrs time if I opted for external beam radio, he said that people in their 60s/70s do not really give that much thought because of their age but when you are younger it is something you have to take into consideration.


I have spoken to 2 guys at the local Prostate Cancer Support Group that have had major issues with other organs due to them basically being fried during the treatment and that is something that is putting me off going down that procedure at the moment, as 1 of them is having to have injections down his shift into his bladder to try and erase one of the issues. 

User
Posted 26 Jun 2023 at 14:01

Hi Oldbarry,


Now that is interesting as I am under Christies in Manchester and the Focal Therapy has not been mentioned but I will be asking about it now, maybe it is not viable in my diagnoses.

User
Posted 26 Jun 2023 at 14:26

Hi Oldbarry,


Having just looked into Focal Therapy, I did ask the Oncologist about HIFU and Cryotherapy, and he replied that there is not enough evidence that these work so Christies do not offer them and have not even done trials on them as if they thought they did work they would have done so.


And the Oncologist I seen said that he was the head of clinical trials at Christies.


There are plenty of private hospitals offering these at quite a cost.


 


 

User
Posted 26 Jun 2023 at 17:45

Hi Paul,


if you go down the HT/RT route you have to consider the side-effects of the HT, which in my case and others I know in my Maggies Group are far, far worse than those from the RT. My RT finished early May and so far any minor side effects I DID have have now gone. However the side effects from the HT can severely affect your QOL…not everyone gets any/all of the side effects but they are NOT nice. And, youve got 2-3 years of it!


I can’t advise you on which route to take but if I was given the option, I would have chosen surgery even though I am a lot older than you.


Have you had the chance to talk to others who had surgery in your support group? They will be able to give you first hand experience.


You’ll certainly feel a lot better when youve made the decision.


all the best,


Derek

User
Posted 27 Jun 2023 at 09:01

Hi PauL,


Sorry to hear about your diagnosis. As the Surgeon said to me when he saw me before the Op, ‘Ah, bummer’....I think because I am a young looking 52 yr old (apparently).


So I had Gleason 8 after biopsy with Seminal vesicles cancerous as well. After a PETSCAN one lymph node lit up. But not sure what it was at that time. 


after consultation with a surgeon and an oncologist, and their internal meetings everyone including oncologist said surgery best option.


Main reasons being: 


i am young, have an aggressive cancer (upgraded to 9 after surgery), and whilst only 50% of negative margins due to positioning of the tumour further treatment via HT and RT is easier after RARP. Apparently less easy the other way around. The lymph node was a side issue as it turned out as removed it in surgery and was negative.


am 3 weeks today post op. Occasional dribble incontinence, and going to start ED pills tomorrow.


i wanted the cancer out, rather than spend the rest of my life with PSA levels and reoccurrence plaguing me. Don’t get me wrong I may still end up with further treatment (and probably will TBH), but the ‘mother ship’ as the surgeon called it is gone.


psychologically for me that was important.


i will deal with the side effects.


 

User
Posted 27 Jun 2023 at 09:03

Sorry pressed the wrong button......so advice is take your time to think about treatment. Nerve sparing helpsregarding ED (I had one removed but one apparently intact) and if you go down surgery see if you can somehow get hold of the best surgeon possible. Mine was amazing. Good luck. 

User
Posted 27 Jun 2023 at 10:11

I was 56 when I had surgery 2 years ago.  All my numbers and blurb are in my profile.  I took advice from a robotic surgery guy, an open surgery guy and a radiotherapy guy. Robotic guy said it was up to me, open guy recommended himself and radio guy said "go for surgery and keep me in reserve if you need salvage".


Robotic surgery it was (incremental nerve-sparing). T3a, negative margins, extra-prostatic extrension 2 mm, clear seminal vesicles, extra-prostatic perineural invasion present.


Two years on my PSA is still <0.01 ng/mL. Incontinence was an issue for 5-6 weeks post-op and now I'd say I'm 99% continent (fatigue, alcohol and caffeine can lead to some alarming moments).  ED almost total - a lot of effort can achieve a very short-lived, half-hearted "semi".


Work insisted I took 12 weeks off from what is a sedentary job. Apart from the ED and rare minor (literally drips) leak I'm now in good physical shape. Walked 190 odd miles coast to coast last year to raise money for PCUK with no problems.


Hope it goes well for you whichever course you choose.


Upkeep


 

Edited by member 27 Jun 2023 at 10:12  | Reason: I'm rotten at typing

 
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