There is so much variation between different people it is hard to give realistic answers.
About 50000 men per year are diagnosed in the UK, this forum has about 100 active contributors, so we are not a representative sample, and we are more likely to be biased towards bad outcomes than good.
If all the cancer is in the prostate and you have surgery (and the surgeon doesn't accidentally leave some prostate behind) it can't come back. Sadly even though the diagnosis says it is is all in the prostate T2 after surgery it is sometimes upgraded to T3 (possibly outside prostate). If it is outside of the prostate surgery probably won't get it all and then you are on the (salvage) RT route.
If you have RT it will kill it inside the prostate and further afield too (about a 10mm margin) or whole pelvis RT if they think it has spread further (unlikely if you are T2). As you still have a prostate you may develop prostate cancer again. Your life expectancy is about 20 years so I think you'll be dead of something else before it comes back for a return match.
It varies, and it depends what you call 'action'. Assuming no complications from either treatment probably as little as six weeks possibly six months. HT might make you less of a action man for a couple of years. Incontinence might ruin your social life for years.
Very high under both options, about 20,000 a year are having these procedures, most are not back to normal but not too far short of their previous life.
I'm five years post treatment, six month PSA done at GPs no contact with treatment hospital unless the PSA starts to rise.
Originally Posted by: Online Community Member- What is the likelihood of permanent incontinence if I go down the surgical route?
- A colleague I worked with 15 years ago ended up permanently incontinent after the removal of his prostrate and he was continually in and out of hospital with infections. This side effect is worrying me.
NHS definition of continent is only needing to use one pad per day. Is that a useful definition for you?
As mentioned earlier there are a lot of prostatectomies and not a lot of complaining. So I assume continence is quite good, or people don't complain.
Originally Posted by: Online Community Member- What level of weight gain is expected from the hormone treatment?
- I have a hiatus hernia and need to keep my weight below 10st 7lbs to manage this and I’m worried the weight gain might cause me problems in this area
I don't think you need worry too much about this. Not many people gain a very large amount of weight, everyone gains a bit though.
Hardly worth worrying about. You will probably tolerate HT well. If you did not continue HT it would take your chance of a cure down from 70% to about 65%. (I can't remember which scientific paper this was in, the figures I'm quoting are in the right ball park if not exactly right)
I have no medical knowledge and all the above is based on general observations from this forum over the last four years. E&OE. If you take advice from random people on the internet do so at your own risk.
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User
Originally Posted by: Online Community MemberSurgery is the preferred route in the UK as that leaves the option for RT later if the cancer returns. Performing surgery after RT is far more complicated and serious. HT is a prolonged treatment and can have quite debilitating affects.
No idea what this is trying to say, but in England, surgery accounts for 1/3rd of radical treatments, and RT accounts for 2/3rds of radical treatments. (In Wales, it's 1/4 surgery and 3/4 RT.)
User
This is a common myth which is regularly shared here. If you need salvage treatment, the outcomes tend to be poor regardless of whether it is salvage RT or salvage surgery; men who need salvage RT have less than 50% chance of achieving full remission. Choosing surgery because if it fails you can still have RT is flawed thinking - better to choose the treatment that is least likely to fail in the first case! Your urologist and oncologist should be able to give you statistics (based on international nomograms that have been adjusted to reflect UK outcomes) on the likelihood of RP or RT failing in your particular case.
Surgery is not the preferred route in the UK - it is the preferred route for men whose best option is surgery. RT is the preferred route in the UK for men whose best option is RT. For men who have the choice of either as the outcome is more or less identical younger men will often choose surgery and older men will often choose RT but in the end it is down to which side effects are most palatable to that patient.
Re liver damage, I have been a member here for 13 or 14 years and I can only think of one man who had to stop normal HT due to liver damage. Liver health is more of a concern for men with incurable cancer who move on to second or third line hormone therapies.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Good morning, I got my results last Friday 26th January, and whilst I was expecting to be diagnosed with cancer, I wasn’t expecting my Gleason score to be as high as 8. My results are summarised below:
- I’m 64 and have a PSA of 31
- My biopsy results, 12 samples on left side, all clear, 12 samples on right side, all Gleason Grade 4
- Gleason score (4+4) =8
- CT scan- organs healthy
- Gamma scan - no evidence cancer has spread out of prostrate, however consultant said there could be microscopic cells outside that are not detected
- T level T2
- CPG level 5
I have 2 treatment options, surgery to remove prostrate or hormone therapy / radiotherapy. I’ve been told both treatments have the same outcome.
So I’m in a dilemma, which option do I choose? I think it would have been easier if they had not given me an option, but they have and I therefore have a decision to make.
Thinking through these options, a number of questions have come to mind, actually quite a few, and these are just the start. I really appreciate your views, you have been through, or are going through the journey I’m about to start, and you have your own first hand experiences. Plus, this forum has been a Godsend to me as I started this journey and helped me through my biopsy, thank you.
Questions
- Of the two treatments, which is more likely for the cancer to return?
- Under both options, how long are you out of action?
- Under both options, what’s the likelihood of life carrying on as normal?
- What happens at the end of the treatment, are you referred back to your GP? Is there any monitoring?
- What is the likelihood of permanent incontinence if I go down the surgical route?
- A colleague I worked with 15 years ago ended up permanently incontinent after the removal of his prostrate and he was continually in and out of hospital with infections. This side effect is worrying me.
- What level of weight gain is expected from the hormone treatment?
- I have a hiatus hernia and need to keep my weight below 10st 7lbs to manage this and I’m worried the weight gain might cause me problems in this area.
- I understand the hormone therapy can damage your liver, what happens if the hormone therapy is stopped as a result of this? Is that it, game over?
As I say, these are my initial thoughts, gathered over the weekend after reading all the leaflets. I am also going to speak to the nurse allocated to me from the hospital and I’m going to contact the Prostrate Cancer UK help line, possibly McMillan too, the accountant in me likes to have everything adding up and correctly balanced.
I was hoping I would be in the watchful monitoring category, I’m not, so I have some difficult decisions to make, I need to ensure I make the right decision for me, your experiences will help guide my decision making process.
Thank you
Stephen
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What happens at the end of the treatment, are you referred back to your GP? Is there any monitoring?
That is probably your only question that can be answered definitively. Depending on which route you take you will continue to be monitored by a urologist / oncologist. There will be regular PSA checks; three monthly initially, then six monthly and then yearly. I guess at some stage you will be referred back to your GP but after two years I haven't got there yet. All my PSA's are done at the GP surgery.
User
I am not sure if reading about my journey would be useful to you, anyway here it is: I think we have been very luck but.....several buts......! I had my prostatectomy at the age of 71. My PSA has remained stable and after 12 years, my consultant tells me that I may consider myself 'cured' but we still keep our fingers crossed! That is the good news! My surgery was very complex and lasted over 5 hours. My recovery was tough because I had to keep the catheter in for over 5 weeks. I was totally incontinent for the first 3/4 weeks but began to improve and I am now 99.9% continent and leak urine when sexually excited and at orgasms - not very romantic - but it is possible to deal with that. My erectile function was not good (age related) before the surgery, while my surgery was allegedly nerve sparing, my erections post-surgery were useless. I think there is some good research evidence that for most men post surgery erections are generally inferior to those before the surgery. So what is the quality of our life, particularly sex life? We were determined to re-establish our intimate life and worked quite hard and pleased that, in spite of our ages, we were able re-established our sex life with some interesting and exciting unintended benefits. I have been observing various threads in this and other forums and in my experience: (1) post surgery erectile function is likely to be inferior to that before the surgery, (2) both consultants and their patients tend to be over optimistic about nerve sparing surgery, (3) the various scans can't accurately predict the extent and the location of the cancer, (4) post-surgery pathology, more often than not, show a higher Gleason score and invasion of the area surrounding the removed prostate, (5) many men will need some form of support to maintain both the strength and the longevity of their erections, but there is a lot of help and options to handle ED, (6) unless you are lucky incontinence may be at least a short term problem, (7) recovery of sex life is a couples' issue; men alone can't do it. Without doubt it is possible to re-establish your sex life if you work as a team with good communication, adaptability, imagination and a sense of humour and see it as a restarting your sex life almost as 'new partners', and (8) Obtain as much advice as you can and find a consultant who has bags of experience. Finally, did we make the right choice? Yes, hindsight is a wonderful skill! However the quality of targeted RA/HT options has made a quantum leap since my surgery which, in someway, make it more difficult to choose an option. I wish you luck and hope you can make a decision with confidence.
Edited by member 29 Jan 2024 at 21:36
| Reason: Typo
'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate |
User
Well you were quick to jump on my comments which where based on the case notes provided by the OP and I stand by them, that given what was posted, the preferred route in the UK would be for surgery.
As for the success rates of SRT post prostatectomy, they are published as "The 5-year clinical progression-free survival rate and distant metastasis rate after SRT were 86.6% and 88.6%, respectively."
User
I'm going to stop researching. All I ever seem to find is bad stuff. 😕
Edited by member 30 Jan 2024 at 12:32
| Reason: Not specified
User
Don't even look carry on with life or it's too depressing we can't change anything so I had my treatment and cracked on with things so far so good 👍
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Hi Stephen.
I'm a very similar age to you. Last February, I had RARP. My PSA was only 6.6, but 20/24 cores positive, bilateral disease, Gleason 8 (4+4) The tumour had just breached the capsule T3a. Subsequently up graded to Gleason 9 (4+5). Since then I've had 3 PSA tests, all undetectable. Had another one today, may get the results tomorrow.
As you've been told, it would seem both treatments have similar outcomes. However, as we're all different, recovery to both treatments, seem to vary a lot. There will be side effects with both treatments.
Personally, 12 months on, incontinence is no longer a problem, ED is, but Invicorp jabs have helped.
RT/HT v surgery is a very common question, and there is no definitive answer.
This link may help you make your decision.
https://www.prostatecancerfree.org/compare-prostate-cancer-treatments/?gad_source=1&gclid=CjwKCAiAtt2tBhBDEiwALZuhAAovzrfm6v5LWCQ-AimYZxSOJWjIYTRHcAAgz5pmTZiI3sb5kxXuYRoCK88QAvD_BwE
As we're in a similar position, you can always PM me if you'd prefer.
The nurses on this site are super, as are the MacMillan's. It's a wise decision to use their expertise. They don't clock watch like most GPs do.
There is a similar thread, started today.
https://community.prostatecanceruk.org/posts/t30209-Robotic-prostectomy-Vs-Radiation
Very best of luck mate.
Adrian
Edited by member 29 Jan 2024 at 12:59
| Reason: Typo
User
It will be very difficult for anyone to be definitive with any answers to your very valid questions as everyone reacts differently and we can only tell you how WE reacted.
Surgery is the preferred route in the UK as that leaves the option for RT later if the cancer returns. Performing surgery after RT is far more complicated and serious. HT is a prolonged treatment and can have quite debilitating affects.
With surgery, you can expect 2-3 days before you are walking around comfortably, a week before the catheter is removed and gradually improving incontinence in most cases over 3-9 months. By incontinence I mean dribbles rather than full flow as long as you keep up with the exercises. ED is likely based on your numbers but there are injections that regain enough of an erection for intercourse and it does not stop orgasms, even with a floppy willy.
You will be on 3 monthly PSA blood tests for at least a year which will then revert to 6 monthly if you numbers stay low.
Hope that helps but keep asking questions
Steve
User
Hi Stephen,
Coming from the other camp(HT/RT, not through choice) I am one of the unlucky ones on HT in that I’ve had just about every side effect going, with the exception of fatigue….no idea why. Others however seem to get off lightly and there doesn’t seem to be any rhyme or reason why. I think by far the worst side-effect from HT is joint ache, and you have to work very hard to stop/overcome this. The others(for me …insomnia, zero libido, hot flushes, brain fog, clumsiness, partial ED) can be managed and are more of a nuisance, but the joint problems can be quite debilitating. Having said that, I have pretty much carried on as normal throughout HT/RT which is something that you can’t do if you have surgery. You will be out of action for a while, but that seems to vary from person to person. I think some people choose HT/RT because of this. I also know that some people make theirs choice with their sex life as a priority.
What scares me the most though is that if I have a recurrence it may well be HT for life, whereas if you have surgery the chances are you can then have SRT.
It’s not an easy decision to make I know, my advice would be to find a local support group such as Maggies and go along and talk to other men who’ve had the treatments. I know many men who’ve made their final choice after joining our Group and hearing about how others have done during their treatments.
All the best with your decision.
Derek
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There are potential side effects with all of the treatments, my husband and I made the decision based on all the info we had on the potential side effects; our own personal circumstances and concerns and what we felt would affect us most. He is 62 and his cancer was in both sides of prostate but we are told contained, Gleason (3+4). We made the decision for RARP (which was done on 10/1/24) so we don’t know full histology yet.
These were our reasons for this choice:
1. Removing the cancer source so no possible cancer in the future developing in the prostate
2. If there were already any Mets undetected before RARP, better possibility of success with salvage RT
3. Incontinence problems, weighed up from all of the experiences from others on here, chance of gaining if not full control, 99%….he felt he could cope with that!
4. ED - again, having read as much as we could from others experience on here, this won’t be the end of our sex lives/intimacy….there are so many ways people on here have kept their sex lives going and they have inspired us! When the time comes we will be positive, and not give up!
5. We appreciate that all of the above may be well be worse than we expect (but could be better!)….but, my husband will be alive and we can continue and be grateful for the life/time we have together!
I guess you have to go into your decision making taking your own personal circumstances into consideration.
Good luck!
Debbie
Edited by member 29 Jan 2024 at 12:53
| Reason: Sp
User
Stephen, sorry to hear of your diagnosis but you do have good treatment options.
Like some others mentioned above, prostate surgery / removal was not an option for me, I had radiotherapy and am on lifelong hormone therapy (Zoladex and enzalutamide). I've been somewhat lucky in terms of side-effects, I haven't had fatigue / brain fog / insomnia / joint aches etc. However, my libido has disappeared and I do get hot flushes.
In terms of weight on HT, my issue is maintaining weight as the combination I'm on can cause loss due to muscle wastage, so I wouldn't worry too much about gaining weight. Eat healthily and exercise and you'll be fine.
At 64 you're around 5 years older than me but I wouldn't expect that to make much difference to how you'd tolerate HT. In many ways, it's so much easier not to have the choice of treatments.
Best of luck to you!
Craig
P.S. riding my bike was, and is, amazing mental therapy.
User
Hi Stephen I did have a choice but didn't want the incontinence issues or catheter so went down the radiotherapy and hormone therapy route my Gleason 9 had 37 session's off radiotherapy and hormone therapy for 18 months 4 year's on my psa remains at 0.01 really happy with my choice good luck whatever you decide gaz 👍
Edited by member 29 Jan 2024 at 16:35
| Reason: Not specified
User
What happens at the end of the treatment, are you referred back to your GP? Is there any monitoring?
That is probably your only question that can be answered definitively. Depending on which route you take you will continue to be monitored by a urologist / oncologist. There will be regular PSA checks; three monthly initially, then six monthly and then yearly. I guess at some stage you will be referred back to your GP but after two years I haven't got there yet. All my PSA's are done at the GP surgery.
User
There is so much variation between different people it is hard to give realistic answers.
About 50000 men per year are diagnosed in the UK, this forum has about 100 active contributors, so we are not a representative sample, and we are more likely to be biased towards bad outcomes than good.
If all the cancer is in the prostate and you have surgery (and the surgeon doesn't accidentally leave some prostate behind) it can't come back. Sadly even though the diagnosis says it is is all in the prostate T2 after surgery it is sometimes upgraded to T3 (possibly outside prostate). If it is outside of the prostate surgery probably won't get it all and then you are on the (salvage) RT route.
If you have RT it will kill it inside the prostate and further afield too (about a 10mm margin) or whole pelvis RT if they think it has spread further (unlikely if you are T2). As you still have a prostate you may develop prostate cancer again. Your life expectancy is about 20 years so I think you'll be dead of something else before it comes back for a return match.
It varies, and it depends what you call 'action'. Assuming no complications from either treatment probably as little as six weeks possibly six months. HT might make you less of a action man for a couple of years. Incontinence might ruin your social life for years.
Very high under both options, about 20,000 a year are having these procedures, most are not back to normal but not too far short of their previous life.
I'm five years post treatment, six month PSA done at GPs no contact with treatment hospital unless the PSA starts to rise.
Originally Posted by: Online Community Member- What is the likelihood of permanent incontinence if I go down the surgical route?
- A colleague I worked with 15 years ago ended up permanently incontinent after the removal of his prostrate and he was continually in and out of hospital with infections. This side effect is worrying me.
NHS definition of continent is only needing to use one pad per day. Is that a useful definition for you?
As mentioned earlier there are a lot of prostatectomies and not a lot of complaining. So I assume continence is quite good, or people don't complain.
Originally Posted by: Online Community Member- What level of weight gain is expected from the hormone treatment?
- I have a hiatus hernia and need to keep my weight below 10st 7lbs to manage this and I’m worried the weight gain might cause me problems in this area
I don't think you need worry too much about this. Not many people gain a very large amount of weight, everyone gains a bit though.
Hardly worth worrying about. You will probably tolerate HT well. If you did not continue HT it would take your chance of a cure down from 70% to about 65%. (I can't remember which scientific paper this was in, the figures I'm quoting are in the right ball park if not exactly right)
I have no medical knowledge and all the above is based on general observations from this forum over the last four years. E&OE. If you take advice from random people on the internet do so at your own risk.
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User
I am not sure if reading about my journey would be useful to you, anyway here it is: I think we have been very luck but.....several buts......! I had my prostatectomy at the age of 71. My PSA has remained stable and after 12 years, my consultant tells me that I may consider myself 'cured' but we still keep our fingers crossed! That is the good news! My surgery was very complex and lasted over 5 hours. My recovery was tough because I had to keep the catheter in for over 5 weeks. I was totally incontinent for the first 3/4 weeks but began to improve and I am now 99.9% continent and leak urine when sexually excited and at orgasms - not very romantic - but it is possible to deal with that. My erectile function was not good (age related) before the surgery, while my surgery was allegedly nerve sparing, my erections post-surgery were useless. I think there is some good research evidence that for most men post surgery erections are generally inferior to those before the surgery. So what is the quality of our life, particularly sex life? We were determined to re-establish our intimate life and worked quite hard and pleased that, in spite of our ages, we were able re-established our sex life with some interesting and exciting unintended benefits. I have been observing various threads in this and other forums and in my experience: (1) post surgery erectile function is likely to be inferior to that before the surgery, (2) both consultants and their patients tend to be over optimistic about nerve sparing surgery, (3) the various scans can't accurately predict the extent and the location of the cancer, (4) post-surgery pathology, more often than not, show a higher Gleason score and invasion of the area surrounding the removed prostate, (5) many men will need some form of support to maintain both the strength and the longevity of their erections, but there is a lot of help and options to handle ED, (6) unless you are lucky incontinence may be at least a short term problem, (7) recovery of sex life is a couples' issue; men alone can't do it. Without doubt it is possible to re-establish your sex life if you work as a team with good communication, adaptability, imagination and a sense of humour and see it as a restarting your sex life almost as 'new partners', and (8) Obtain as much advice as you can and find a consultant who has bags of experience. Finally, did we make the right choice? Yes, hindsight is a wonderful skill! However the quality of targeted RA/HT options has made a quantum leap since my surgery which, in someway, make it more difficult to choose an option. I wish you luck and hope you can make a decision with confidence.
Edited by member 29 Jan 2024 at 21:36
| Reason: Typo
'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate |
User
Originally Posted by: Online Community MemberSurgery is the preferred route in the UK as that leaves the option for RT later if the cancer returns. Performing surgery after RT is far more complicated and serious. HT is a prolonged treatment and can have quite debilitating affects.
No idea what this is trying to say, but in England, surgery accounts for 1/3rd of radical treatments, and RT accounts for 2/3rds of radical treatments. (In Wales, it's 1/4 surgery and 3/4 RT.)
User
This is a common myth which is regularly shared here. If you need salvage treatment, the outcomes tend to be poor regardless of whether it is salvage RT or salvage surgery; men who need salvage RT have less than 50% chance of achieving full remission. Choosing surgery because if it fails you can still have RT is flawed thinking - better to choose the treatment that is least likely to fail in the first case! Your urologist and oncologist should be able to give you statistics (based on international nomograms that have been adjusted to reflect UK outcomes) on the likelihood of RP or RT failing in your particular case.
Surgery is not the preferred route in the UK - it is the preferred route for men whose best option is surgery. RT is the preferred route in the UK for men whose best option is RT. For men who have the choice of either as the outcome is more or less identical younger men will often choose surgery and older men will often choose RT but in the end it is down to which side effects are most palatable to that patient.
Re liver damage, I have been a member here for 13 or 14 years and I can only think of one man who had to stop normal HT due to liver damage. Liver health is more of a concern for men with incurable cancer who move on to second or third line hormone therapies.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Well you were quick to jump on my comments which where based on the case notes provided by the OP and I stand by them, that given what was posted, the preferred route in the UK would be for surgery.
As for the success rates of SRT post prostatectomy, they are published as "The 5-year clinical progression-free survival rate and distant metastasis rate after SRT were 86.6% and 88.6%, respectively."
User
I'm going to stop researching. All I ever seem to find is bad stuff. 😕
Edited by member 30 Jan 2024 at 12:32
| Reason: Not specified
User
Don't even look carry on with life or it's too depressing we can't change anything so I had my treatment and cracked on with things so far so good 👍