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User
Posted 26 Dec 2022 at 11:03

Hello everyone,


Firstly Merry Xmas to you all and I hope you’ve had a lovely time with family and friends.


Id like your help please. I now know I have T2 N0 but Gleason 9. The tumour is in my left node? I’ve been offered RP or HT and RT.


Some people I’ve spoken to suggest I must find the very best surgeon? Surely all consultants have the required skills and expertise?


can anyone advise and share their thoughts and experience 


Thank you in anticipation 


 


Best Wishes 


 


Geoff

User
Posted 26 Dec 2022 at 16:55
I wouldn't get too stressed about it. Anyone who operates on you will be appropriately qualified. As Lyn said, the only way to GUARANTEE that you get a specific surgeon is to go private, and that's an awful lot of money. I'd suggest getting referred to a specialist regional cancer centre (if you aren't already) where every surgeon should be doing lots of these operations.

Best wishes,

Chris
User
Posted 26 Dec 2022 at 13:53
The majority of consultant urologists publish their data on the BAUS website as they are required to do - there are a few (with big egos perhaps) who choose not to. The data you are looking for is:
- % of patients with positive margins
- % needing salvage treatment
- % on one pad or less per day at 12 months post-op
- % who can get an erection naturally or with chemical assistance at 12 months post-op

The problem with comparing data is a) some urologists cherrypick patients with low level disease, while others are prepared to operate on men where it is already known that the outcome might not be great - the data of the cherrypickers therefore looks better, and b) on the NHS, you may get a great urology consultant but there is no guarantee that s/he will actually do the operation.

It is said that you should ensure you get a surgeon who is doing at least 100 RPs a year - you perhaps don't want someone who is just learning or a very senior consultant who spends a lot of time lecturing and not so much practical these days. We paid to get the surgeon we believed gave John the best chance of success although if we had stuck with the NHS we may have had one of his underlings operating under his supervision and that might have been okay.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Dec 2022 at 21:45

Ernie I’m not 100% certain but leaning that way 


I’ve read that if I decided on RT then you can’t have RP.


Also I assume that with RP, whilst there are risks and side effects, at least it all over (🙏) after surgery 


That said I’d really appreciate your views?

User
Posted 26 Dec 2022 at 22:54

Which ever route you choose you might find that you can put the whole thing in a box for a while but every so often a blood test pops up, 3 monthly at first, then 6 monthly and eventually yearly. The old anxiety seems to affect many of us around this time.


All these treatments have consequences. It might be worth getting the prostate cancer tool kit, that might help the decision making process. It's free.


https://shop.prostatecanceruk.org/tool-kit


Check my profile if you see where I am at on this journey.


Kind Regards


Jim


 

User
Posted 26 Dec 2022 at 23:36
User
Posted 27 Dec 2022 at 01:19

Originally Posted by: Online Community Member


I’ve read that if I decided on RT then you can’t have RP.


Also I assume that with RP, whilst there are risks and side effects, at least it all over (🙏) after surgery 





Hi Geoff,


We had similar thoughts to yourself when rob was diagnosed. Although it had spread to his lymph node he still wanted the op.


Thankfully for us it felt like it was quickly all over after surgery and life began again. It didn’t go without side effects but continence has been really good….ED still a work in progress but we both handle that part pretty well. 12 months down the line and currently undetectable PSA’s, still a worrying time every 3 months though.


We did find who we thought (and still think) was the most amazing surgeon and person and feel incredibly lucky. We saw him privately initially then got referred to him on the NHS. Unfortunately with lack of knowledge it took me a long time to sort the referral so opted back to private  when the waiting time had increased. There will be lots of amazing surgeons available I’m sure.


Best of luck with your decisions and future treatment.

User
Posted 27 Dec 2022 at 06:41

Thanks Geoff, I'm still awaiting the outcome of my biopsy so not at the stage of making a choice but trying to evaluate the options. I got the 'kit' from PCUK which I find very useful but trying to evaluate the side effects.


That said I'm leaning towards RP if I need treatment but still unsure!

Edited by member 27 Dec 2022 at 06:43  | Reason: Not specified

User
Posted 27 Dec 2022 at 09:53

Hi Geoff - I was operated on at the Marsden hospital London. Many of the uk’s high volume surgeon’s work at the Marsden. Marsden RP surgeons are alleged leaders in their field. Unfortunately this site doesn’t like publishing the surgeons names but he’s listed in the Daily Mail article quoted above. My surgery was very successful and now 4.5 years since surgery every psa has been ‘undetectable’ and no significant side effects - I have an active sex life, bonus. I did a lot of research on who was going operate on me. All the best with your decision!! Cheers

Edited by member 27 Dec 2022 at 10:00  | Reason: Fixed grammar error

User
Posted 28 Dec 2022 at 13:49

My penny's worth for what it is worth


 


I opted for surgery because I wanted a quick treatment that would, in my eyes, get rid of the problem once and for all. Now, my cancer was still confined within the prostate so that made it somewhat easier to choose the surgery option. That said, based on my research (It has been reported in the US that removing the "mother ship", even if you need RT to deal with the spread of prostate cancer cells to other areas, improves the overall outcome over a period of 10 years) I think I would have still opted for surgery and then RT to deal with any cells that had spread.


 


Re cost, because I was concerned that my surgery might be delayed ( It took place a few days before Christmas 2021) I did look into going private (with the same consultant and actually in the same hospital: Addenbrookes) but was told that I would not get the treatment any earlier. I saved over £20K by not doing so, though, as a consequence, was  not able to sleep at the hospital the night before and was not able to have a nice hospital cooked English  breakfast.


 


Ivan

Show Most Thanked Posts
User
Posted 26 Dec 2022 at 13:53
The majority of consultant urologists publish their data on the BAUS website as they are required to do - there are a few (with big egos perhaps) who choose not to. The data you are looking for is:
- % of patients with positive margins
- % needing salvage treatment
- % on one pad or less per day at 12 months post-op
- % who can get an erection naturally or with chemical assistance at 12 months post-op

The problem with comparing data is a) some urologists cherrypick patients with low level disease, while others are prepared to operate on men where it is already known that the outcome might not be great - the data of the cherrypickers therefore looks better, and b) on the NHS, you may get a great urology consultant but there is no guarantee that s/he will actually do the operation.

It is said that you should ensure you get a surgeon who is doing at least 100 RPs a year - you perhaps don't want someone who is just learning or a very senior consultant who spends a lot of time lecturing and not so much practical these days. We paid to get the surgeon we believed gave John the best chance of success although if we had stuck with the NHS we may have had one of his underlings operating under his supervision and that might have been okay.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Dec 2022 at 16:55
I wouldn't get too stressed about it. Anyone who operates on you will be appropriately qualified. As Lyn said, the only way to GUARANTEE that you get a specific surgeon is to go private, and that's an awful lot of money. I'd suggest getting referred to a specialist regional cancer centre (if you aren't already) where every surgeon should be doing lots of these operations.

Best wishes,

Chris
User
Posted 26 Dec 2022 at 19:47
Geoff, your question about surgeons does it mean you’ve decided to go the RP route rather than HT/RT. Can I ask what decided you to go with RP?
Thanks. Ernie
User
Posted 26 Dec 2022 at 21:45

Ernie I’m not 100% certain but leaning that way 


I’ve read that if I decided on RT then you can’t have RP.


Also I assume that with RP, whilst there are risks and side effects, at least it all over (🙏) after surgery 


That said I’d really appreciate your views?

User
Posted 26 Dec 2022 at 22:54

Which ever route you choose you might find that you can put the whole thing in a box for a while but every so often a blood test pops up, 3 monthly at first, then 6 monthly and eventually yearly. The old anxiety seems to affect many of us around this time.


All these treatments have consequences. It might be worth getting the prostate cancer tool kit, that might help the decision making process. It's free.


https://shop.prostatecanceruk.org/tool-kit


Check my profile if you see where I am at on this journey.


Kind Regards


Jim


 

User
Posted 26 Dec 2022 at 23:36
User
Posted 27 Dec 2022 at 01:19

Originally Posted by: Online Community Member


I’ve read that if I decided on RT then you can’t have RP.


Also I assume that with RP, whilst there are risks and side effects, at least it all over (🙏) after surgery 





Hi Geoff,


We had similar thoughts to yourself when rob was diagnosed. Although it had spread to his lymph node he still wanted the op.


Thankfully for us it felt like it was quickly all over after surgery and life began again. It didn’t go without side effects but continence has been really good….ED still a work in progress but we both handle that part pretty well. 12 months down the line and currently undetectable PSA’s, still a worrying time every 3 months though.


We did find who we thought (and still think) was the most amazing surgeon and person and feel incredibly lucky. We saw him privately initially then got referred to him on the NHS. Unfortunately with lack of knowledge it took me a long time to sort the referral so opted back to private  when the waiting time had increased. There will be lots of amazing surgeons available I’m sure.


Best of luck with your decisions and future treatment.

User
Posted 27 Dec 2022 at 06:41

Thanks Geoff, I'm still awaiting the outcome of my biopsy so not at the stage of making a choice but trying to evaluate the options. I got the 'kit' from PCUK which I find very useful but trying to evaluate the side effects.


That said I'm leaning towards RP if I need treatment but still unsure!

Edited by member 27 Dec 2022 at 06:43  | Reason: Not specified

User
Posted 27 Dec 2022 at 08:21

I’m seeing my consultant surgeon on the 5th Jan and also plan to see the oncologist before I make any decision 

User
Posted 27 Dec 2022 at 08:22

Could you let me know which surgeon you used?

User
Posted 27 Dec 2022 at 08:23

Could you let me know which surgeon you used?

User
Posted 27 Dec 2022 at 09:23

Geoff,


 


Site rules prohibit naming medical staff. 


Best wishes,


Chris


 

User
Posted 27 Dec 2022 at 09:47
User
Posted 27 Dec 2022 at 09:53
A good "trick" is to see them privately and ask to go on their NHS list.
That's what I did. Didn't stop me nearly croaking from complications though, but at least I had the man himself to explain what had gone wrong afterwards!
User
Posted 27 Dec 2022 at 09:53

Hi Geoff - I was operated on at the Marsden hospital London. Many of the uk’s high volume surgeon’s work at the Marsden. Marsden RP surgeons are alleged leaders in their field. Unfortunately this site doesn’t like publishing the surgeons names but he’s listed in the Daily Mail article quoted above. My surgery was very successful and now 4.5 years since surgery every psa has been ‘undetectable’ and no significant side effects - I have an active sex life, bonus. I did a lot of research on who was going operate on me. All the best with your decision!! Cheers

Edited by member 27 Dec 2022 at 10:00  | Reason: Fixed grammar error

User
Posted 27 Dec 2022 at 10:24

Thank you so much 

User
Posted 27 Dec 2022 at 10:39

Go private, you are doing the right thing.


I have private health care and I was told from the outset by the health care professionals that NHS treatment will be fast tracked and the after care will be better. So stick with the NHS. In my postcode it has been neither. 


 


 

User
Posted 28 Dec 2022 at 13:49

My penny's worth for what it is worth


 


I opted for surgery because I wanted a quick treatment that would, in my eyes, get rid of the problem once and for all. Now, my cancer was still confined within the prostate so that made it somewhat easier to choose the surgery option. That said, based on my research (It has been reported in the US that removing the "mother ship", even if you need RT to deal with the spread of prostate cancer cells to other areas, improves the overall outcome over a period of 10 years) I think I would have still opted for surgery and then RT to deal with any cells that had spread.


 


Re cost, because I was concerned that my surgery might be delayed ( It took place a few days before Christmas 2021) I did look into going private (with the same consultant and actually in the same hospital: Addenbrookes) but was told that I would not get the treatment any earlier. I saved over £20K by not doing so, though, as a consequence, was  not able to sleep at the hospital the night before and was not able to have a nice hospital cooked English  breakfast.


 


Ivan

User
Posted 28 Dec 2022 at 14:34
When you go privately they like you to stay as many nights as possible because that is where the hospital makes its profits (especially the NHS ones).
When I had my hip done privately they said I needed to stay 3 nights at 1000 a night. My surgeons patients on the NHS were often day cases! Explain!
 
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