I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Which treatment to choose?

Email this conversation Print this conversation
User
Posted 05 Nov 2020 at 13:23

Hi, my husband is currently tortured trying to choose which treatment to take .....


His Gleason score is 7 (3+4), his PSA 3.31 and he is 58yrs old. He has 2 cancer areas on the left hand side of his prostate and it is localised. Urology have said that given his age and low score, they can get him cancer free and want to take action rather than just monitor it - they have suggested surgery as opposed to radiotherapy.


Obviously he is very, very concerned about the risk of damage to his erectile function and waterworks.  He would have surgery at Stepping Hill in Stockport using the Da Vinci robotic laparascopy.


Does anyone have any experience of surgery there?  All he hears are bad news stories, nothing positive! :-(

User
Posted 05 Nov 2020 at 16:16

Hi,


It's a tough decision and even when you've taken it you can wonder if it was right.   It's very rare for anyone to say they took the wrong treatment.


Anything with a 4 in it is probably worth treatment.  If it becomes inoperable you will say you took the wrong treatment.


As far as hearing bad things.   You could look up the surgeon in the https://www.baus.org.uk/   to see what his record it like.   Number of operations, what type etc.   In general it's considered better if they do a lot of operations which you might say is at least 1 a week for several years, although some would prefer more.  They all have to start somewhere though.


You might let us know more about the bad things you've heard.   My immediate thought is some people like complaining and you might be better ignoring them.   That said there are risks to potency and continence and even the best surgeon might not get it right every time.   The nerves for erection are very delicate a bit like undoing a spiders web on a ball.  They can do it but sometimes they deliberately cut them if there's a risk of them being effected.   He cut mine on one side and told me he would.  Although I think he damaged the other side as well as it isn't as good as he said.  For me getting rid of the cancer was an Everest next to a few hills.  The real choices are few.


All the best, Peter


 

User
Posted 05 Nov 2020 at 16:23

I don't know that hospital, but he can ask to be referred to any hospital in England - he doesn't have to use one he's not happy with. You are quite near the Christie in Manchester, one of the main England cancer centres. I don't know what their reputation for prostatectomy is, but it's probably good, and you might be able to get Retzius sparing done there on the NHS, which improves outcomes for both continence and erectile function.


Have they said if you are likely to get nerve sparing? It sounds like it should be possible on at least one side, and they might be able to do even better than that.

User
Posted 05 Nov 2020 at 17:07

Originally Posted by: Online Community Member
you might be able to get Retzius sparing done there on the NHS, which improves outcomes for both continence and erectile function.


No, it seems to improve outcomes for continence but there is no data yet that says it improves outcomes for erectile function ... ask Bollinge! 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 05 Nov 2020 at 18:43
I think realistically you and hubby need to know that there is no way to avoid erectile dysfunction with any treatment for prostate cancer. That’s the truth of it I’m afraid. Only the very very lucky few are ok soon after treatment. Surgery , even with nerve sparing , can take well over a year to get back to normal , and even then you may need drugs and a pump. And by god you need to put a load of effort in to keep him healthy and hopeful. And then there is loss of length and zero ejaculation which can be hard to come to terms with. If you take the RT route then ED may take longer to emerge but is mostly then permanent. If you need HT then he’s unlikely to even want sex at all.
I don’t know anyone on here that’s tried harder than me to regain function after nerve sparing surgery but it still took 2 1/2 yrs to be totally spontaneous, and even then I need daily Tadalafil and usually a cock ring.
Good luck ok
User
Posted 05 Nov 2020 at 23:17

Linz


Bear in mind I used a surgeon with a very good reputation who specialises in nerve sparing prostectomys. 


Erections are slightly less frequent and probably about 90% of what they were. I also still tend to use (not always) 50mg of viagra for events. Previously hadn't even needed to consider that. But we were able to resume penetrative sex at 4 weeks and haven't really looked back. I think in part there is some reassurance with the viagra (for me) but to be honest it doesn't detract from anything. 


Orgasms are dry (which I knew was an outcome) which is slightly odd but the experience/feeling is just the same. There is no wet patch LOL


At the same time as the weeks go by everything seems to be getting more and more back to normal. Spontaneous erections etc so I really don't have any concerns


I think a huge amount depends on your attitude (both you and your husbands) to the situation. Things will not be quite as good as they were but if you can communicate, if you can improvise a bit if its not going quite as planned and if you can retain an intimate relationship then its perfectly possible to be happy and fullfilled. 


I had a friend who had the same operation with the same surgeon 6 months before me. He had a similar outcome to the above and it was hugely reassuring to know that there was a good chance of a pretty decent recovery. And I've seen reports from people that have used this site that have been similar. 


Hope that helps. Ask away if you need more

User
Posted 06 Nov 2020 at 18:01

Hi linz


I live in East Manchester, my local hospital is Tameside but they share their urology department with stepping hill. So your husband and I have probably met the same medics. If you read my profile you will see that I had brachy and RT along with HT. All my treatment was at the Christie. As Chris said you have to accept that whatever treatment you have things won't be the same again. For me the problem is the HT and complete lack of libido, it's taking a while to recover, but at least no incontinence.


Don't dismiss RT I think it is a lot less invasive than surgery. 

Dave

User
Posted 07 Nov 2020 at 04:09
Hi
We had a similar set of questions to you. We had excellent medical advice from the Epsom Hospital (which is affiliated to the Marsden). This community has an excellent toolkit that independently outlines all the options.

I was 60 in good health, grade T2. I spoke to many friends, I was surprised how many had prostate cancer but didn’t talk about it. I got great face to face feedback. I was torn between surgery and hormone and radio therapy. I finally opted for surgery.

I was operated on at the Marsden by one of UKs leading surgeons on the NHS (we spent time researching who would do the surgery and this man stood out based on numbers of successful ops).

That was 2 years 3 months ago, I have now had 6 undetectable PSA results.
No incontinence at all and I run half marathons now. Took time and patience but whilst I am not the same I can now have enjoyable sex. My penis is quite a bit shorter (no longer a show stopper in the change rooms) but so what, and my erection is about 80% now.

Recovery from surgery relies on good prep before surgery pelvic floor and core plus weight reduction (I lost 6kg). Post surgery follow instructions, patience over the first 6 weeks is key, continue with pelvic floor exercises when the doctors say so. Then wait for the ED to recover. It takes time and it’s very frustrating. I used ciallis and regular masterbation. You have to work on it to retrain the nerves. It took me 18 months before any true stirrings. Your man could feel very embarrassed and let down during this period, I did. But for me it did come back - it does for many men. I can not reinforce how important the process of surgeon selection is. It does comes down to the experience of the surgeon and what they find when they get in. BTW all the scars resulting from surgery are hardly visible.

My histology upgraded my cancer to T3B, G of 3+4+5. I was told it was particularly nasty and I was advised about 40% nerves spared - but in my mind now I am cancer free, relaxed and hardly think about it. I am now on yearly testing.

Was surgery MY best solution? I think so because some of my friends are still in treatment with lesser staging grade to me. But it’s a very personal choice.
I am conscious many men on here are in a bad way so I don’t want to give an impression it’s all easy - it isn’t. My key decision concerning surgery - who do I choose to do the op, don’t be afraid of second and third opinions and travelling to find the right surgeon. Someone in this forum once said not all plumbers are the same - same with urologists, even with the best of intentions.
User
Posted 07 Nov 2020 at 06:45
My own surgeon, who I think has done more than 4000 prostatectomies across the world by now, (and who I know is not Matron’s flavour of the month) told me he would not recommend a friend or family member to go to any surgeon who does less than 100 prostatectomies per year.

If you watch the videos of the surgery (and I’m so sad that I have...) it’s incredibly complex to not only remove the cancer, but also to retain urinary and erectile functions if possible. If you get the wrong surgeon on a bad day you might be wandering round in nappies with a truncated limp dick for the rest of your life, but you could be cancer-free.

You can check on a surgeon’s outcomes on the British Association of Urinary Surgeons’ website. There is also the Daily Mail’s “The Best Prostate Surgeons in Britain” as reviewed by their peers, please Google them as I am too tired to post hyper-links now but, they are easily found.

You can choose any surgeon in the country for what is, if robotic prostate surgery, and if all goes well, usually just an overnight hospital stay in hospital. Make sure you choose the right surgeon for you.

Bearing in mind, he has a low PSA score and Gleason 3+4=7, I would just say that my mate is G3+4=7 and has been happily on active surveillance for five years, with regular monitoring. I have no idea of the clinical diagnosis in your case, but you might do well to seek a second opinion from one of the afore Googled (have I coined a new phrase?) specialists and an oncologist as well.

My advice to you is to avoid all treatment as long as possible until your medical team advise it’s not wise to do so.

Best of luck.

Cheers, John
Show Most Thanked Posts
User
Posted 05 Nov 2020 at 16:16

Hi,


It's a tough decision and even when you've taken it you can wonder if it was right.   It's very rare for anyone to say they took the wrong treatment.


Anything with a 4 in it is probably worth treatment.  If it becomes inoperable you will say you took the wrong treatment.


As far as hearing bad things.   You could look up the surgeon in the https://www.baus.org.uk/   to see what his record it like.   Number of operations, what type etc.   In general it's considered better if they do a lot of operations which you might say is at least 1 a week for several years, although some would prefer more.  They all have to start somewhere though.


You might let us know more about the bad things you've heard.   My immediate thought is some people like complaining and you might be better ignoring them.   That said there are risks to potency and continence and even the best surgeon might not get it right every time.   The nerves for erection are very delicate a bit like undoing a spiders web on a ball.  They can do it but sometimes they deliberately cut them if there's a risk of them being effected.   He cut mine on one side and told me he would.  Although I think he damaged the other side as well as it isn't as good as he said.  For me getting rid of the cancer was an Everest next to a few hills.  The real choices are few.


All the best, Peter


 

User
Posted 05 Nov 2020 at 16:23

I don't know that hospital, but he can ask to be referred to any hospital in England - he doesn't have to use one he's not happy with. You are quite near the Christie in Manchester, one of the main England cancer centres. I don't know what their reputation for prostatectomy is, but it's probably good, and you might be able to get Retzius sparing done there on the NHS, which improves outcomes for both continence and erectile function.


Have they said if you are likely to get nerve sparing? It sounds like it should be possible on at least one side, and they might be able to do even better than that.

User
Posted 05 Nov 2020 at 16:33

Hi LinzG,


I can't help on the procedure they are offering you but was there a reason he was not offered Brachytherapy.


I  had Psa of 2.19 and Gleason 3+4=7 with five out of 20 samples positive.I was offered Robotic removal by the first specialist i spoke to at the Lister hospital in Stevenage Hertfordshire and i think he expected me to take that option but i ask for a second opinion from another specialist in Brachytherapy that was at the hospital that day.


He could see no reason why i could not have Brachytherapy but would need to have it at his hospital Mount Vernon near London.I decided that the Brachytherapy was better for me and had possibly less side affects.


By the way i was 70 at the time of my operation and 4 years on my Psa is down to 0.18 with yearly checkups in December.


If you click on my Avatar you can see my progress so far.This may not be the best for your Husband and needs to be checked with the specialists.


Good luck John.

Edited by member 05 Nov 2020 at 16:34  | Reason: Not specified

User
Posted 05 Nov 2020 at 17:07

Originally Posted by: Online Community Member
you might be able to get Retzius sparing done there on the NHS, which improves outcomes for both continence and erectile function.


No, it seems to improve outcomes for continence but there is no data yet that says it improves outcomes for erectile function ... ask Bollinge! 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 05 Nov 2020 at 17:41

Hi John, and thank you,


Yes he has been offered radiotherapy and brachytherapy but both the Oncologist and Urology Surgeon said that given his age, surgery would be better to increase the chance of no recurrence or a secondary developing later.


He is desperate for any options that provide less chance of erectile dysfunction and urinary incontinence. The surgeon did say the cancer is located in a place where nerve sparing 'should' be possible, and of course he can't give any guarantees, but where Nick's (hubby) head is at the moment, he needs to hear better than 'should'!


Linz

User
Posted 05 Nov 2020 at 18:42

Hi Linz


If you click on my profile you can see my story.


Same age as your husband, same Gleason score, my PSA was very slightly higher.


I had an open Prostectomy back in March this year. Everything virtually back to normal. I wasn't given guarantees- nobody can but my surgeon was virtually 100% confident on incontinence and about 80% on erectile function.


Ask away if you want to know more

User
Posted 05 Nov 2020 at 18:43
I think realistically you and hubby need to know that there is no way to avoid erectile dysfunction with any treatment for prostate cancer. That’s the truth of it I’m afraid. Only the very very lucky few are ok soon after treatment. Surgery , even with nerve sparing , can take well over a year to get back to normal , and even then you may need drugs and a pump. And by god you need to put a load of effort in to keep him healthy and hopeful. And then there is loss of length and zero ejaculation which can be hard to come to terms with. If you take the RT route then ED may take longer to emerge but is mostly then permanent. If you need HT then he’s unlikely to even want sex at all.
I don’t know anyone on here that’s tried harder than me to regain function after nerve sparing surgery but it still took 2 1/2 yrs to be totally spontaneous, and even then I need daily Tadalafil and usually a cock ring.
Good luck ok
User
Posted 05 Nov 2020 at 19:39

Thanks so much Mike, that's fantastic to hear, what an amazing outcome.  Can we ask what 'virtually back to normal' means?  Obviously 7 months is still fairly early days ......


Linz

User
Posted 05 Nov 2020 at 23:17

Linz


Bear in mind I used a surgeon with a very good reputation who specialises in nerve sparing prostectomys. 


Erections are slightly less frequent and probably about 90% of what they were. I also still tend to use (not always) 50mg of viagra for events. Previously hadn't even needed to consider that. But we were able to resume penetrative sex at 4 weeks and haven't really looked back. I think in part there is some reassurance with the viagra (for me) but to be honest it doesn't detract from anything. 


Orgasms are dry (which I knew was an outcome) which is slightly odd but the experience/feeling is just the same. There is no wet patch LOL


At the same time as the weeks go by everything seems to be getting more and more back to normal. Spontaneous erections etc so I really don't have any concerns


I think a huge amount depends on your attitude (both you and your husbands) to the situation. Things will not be quite as good as they were but if you can communicate, if you can improvise a bit if its not going quite as planned and if you can retain an intimate relationship then its perfectly possible to be happy and fullfilled. 


I had a friend who had the same operation with the same surgeon 6 months before me. He had a similar outcome to the above and it was hugely reassuring to know that there was a good chance of a pretty decent recovery. And I've seen reports from people that have used this site that have been similar. 


Hope that helps. Ask away if you need more

User
Posted 06 Nov 2020 at 13:54

Thank you SO much for your transparency and info Mike.  Can I ask who your surgeon is please? And which hospital he is at? Also, did you consider Focal Therapy at all?

User
Posted 06 Nov 2020 at 14:23

Linz


Don't think you are allowed to post names on here but will message you


Someone posted this a little while ago https://www.dailymail.co.uk/health/article-5808997/Meet-best-urologists-Britain.html


I looked at all options for treatment including Focal Therapy


Every situation is different and we all have treatment preferences so really important you make your mind up when you are as well informed as you can be


Feel free to keep asking the questions

User
Posted 06 Nov 2020 at 15:11

Thanks Mike, I'm not able to send a Private Message cos I've not been a member of the Blog for long enough, but our location is Cheshire :-)

User
Posted 06 Nov 2020 at 17:50

Linz


I am similar.See profile G7 3+4 PSA 5.9 OP May 2019 aged 60. Active, fit, healthy, sexually active, no urinary issues. I have no experience of Stockport. I was given the 3 choices of AS, RT or Surgery with 50% nerve sparing.


You have been given a recommendation just like me for removal. Bear in mind that this is from a group of experts rather than just the Consultant that you see.


You said that your OH only hears bad news stories......... the only way forward is to be positive. It will always be a tough decision but at 3+4 I chose surgery (similar age).


The journey since then has been difficult I have to admit especially mentally, but you need to look forward. Negativity will beat positivity in most people.


ED. 50% Nerve sparing, Somaerect Pump, Tadalafil 5mg daily, Viagra 50mg for event all since Nov 2019. Yes Improvement but definitely no spontaneous erection. Penetration twice in that time. Your sex life will change and you will need to adapt. We book appointments with each other !!. It requires effort. My orgasms are stronger than before albeit dry. 1st time was surreal but he will get used to it.


Incontinence. Difficult for me to be constructive as I drink too much. It will be a new plumbing system so what everyone says re Pelvic Floor Exercises - pay attention


Wishing you all be best

User
Posted 06 Nov 2020 at 18:01

Hi linz


I live in East Manchester, my local hospital is Tameside but they share their urology department with stepping hill. So your husband and I have probably met the same medics. If you read my profile you will see that I had brachy and RT along with HT. All my treatment was at the Christie. As Chris said you have to accept that whatever treatment you have things won't be the same again. For me the problem is the HT and complete lack of libido, it's taking a while to recover, but at least no incontinence.


Don't dismiss RT I think it is a lot less invasive than surgery. 

Dave

User
Posted 07 Nov 2020 at 04:09
Hi
We had a similar set of questions to you. We had excellent medical advice from the Epsom Hospital (which is affiliated to the Marsden). This community has an excellent toolkit that independently outlines all the options.

I was 60 in good health, grade T2. I spoke to many friends, I was surprised how many had prostate cancer but didn’t talk about it. I got great face to face feedback. I was torn between surgery and hormone and radio therapy. I finally opted for surgery.

I was operated on at the Marsden by one of UKs leading surgeons on the NHS (we spent time researching who would do the surgery and this man stood out based on numbers of successful ops).

That was 2 years 3 months ago, I have now had 6 undetectable PSA results.
No incontinence at all and I run half marathons now. Took time and patience but whilst I am not the same I can now have enjoyable sex. My penis is quite a bit shorter (no longer a show stopper in the change rooms) but so what, and my erection is about 80% now.

Recovery from surgery relies on good prep before surgery pelvic floor and core plus weight reduction (I lost 6kg). Post surgery follow instructions, patience over the first 6 weeks is key, continue with pelvic floor exercises when the doctors say so. Then wait for the ED to recover. It takes time and it’s very frustrating. I used ciallis and regular masterbation. You have to work on it to retrain the nerves. It took me 18 months before any true stirrings. Your man could feel very embarrassed and let down during this period, I did. But for me it did come back - it does for many men. I can not reinforce how important the process of surgeon selection is. It does comes down to the experience of the surgeon and what they find when they get in. BTW all the scars resulting from surgery are hardly visible.

My histology upgraded my cancer to T3B, G of 3+4+5. I was told it was particularly nasty and I was advised about 40% nerves spared - but in my mind now I am cancer free, relaxed and hardly think about it. I am now on yearly testing.

Was surgery MY best solution? I think so because some of my friends are still in treatment with lesser staging grade to me. But it’s a very personal choice.
I am conscious many men on here are in a bad way so I don’t want to give an impression it’s all easy - it isn’t. My key decision concerning surgery - who do I choose to do the op, don’t be afraid of second and third opinions and travelling to find the right surgeon. Someone in this forum once said not all plumbers are the same - same with urologists, even with the best of intentions.
User
Posted 07 Nov 2020 at 06:45
My own surgeon, who I think has done more than 4000 prostatectomies across the world by now, (and who I know is not Matron’s flavour of the month) told me he would not recommend a friend or family member to go to any surgeon who does less than 100 prostatectomies per year.

If you watch the videos of the surgery (and I’m so sad that I have...) it’s incredibly complex to not only remove the cancer, but also to retain urinary and erectile functions if possible. If you get the wrong surgeon on a bad day you might be wandering round in nappies with a truncated limp dick for the rest of your life, but you could be cancer-free.

You can check on a surgeon’s outcomes on the British Association of Urinary Surgeons’ website. There is also the Daily Mail’s “The Best Prostate Surgeons in Britain” as reviewed by their peers, please Google them as I am too tired to post hyper-links now but, they are easily found.

You can choose any surgeon in the country for what is, if robotic prostate surgery, and if all goes well, usually just an overnight hospital stay in hospital. Make sure you choose the right surgeon for you.

Bearing in mind, he has a low PSA score and Gleason 3+4=7, I would just say that my mate is G3+4=7 and has been happily on active surveillance for five years, with regular monitoring. I have no idea of the clinical diagnosis in your case, but you might do well to seek a second opinion from one of the afore Googled (have I coined a new phrase?) specialists and an oncologist as well.

My advice to you is to avoid all treatment as long as possible until your medical team advise it’s not wise to do so.

Best of luck.

Cheers, John
 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2025 Prostate Cancer UK