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User

Posted 20 Dec 2022 at 19:54

Hi all

i have been told today I have a Gleason 3 + 3 and have localised prostate cancer ,my recent psa 5.5. 7 cores taken from either side ,left side all positive right side benign. Seeking advice on what is the best options either radiotherapy ,HT or full prostectomy ,any advice on HIFU and whether this is done on the nhs it seems an expensive treatment, I am seeing another specialist at cancer hospital next week . Which is the best option that spares the nerves . Any advice please , wish everyone well ,been very informative reading what is on the forum.

nick

User

Posted 21 Dec 2022 at 02:05

There isn't enough information here. You would need to ask the surgeon whether nerve sparing on the left side would be possible- with 7 out of 7 positive, it may be too near the edge. Nerve sparing on the right side should be feasible.

Worth asking about HIFU but again, with 7/7 positive you may have too much cancer. HIFU has less risk of side effects but also a higher risk of recurrence / needing further treatment.

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

User

Posted 21 Dec 2022 at 06:02

Both a prostatectomy and radiotherapy (usually combined with HT) are highly effective treatments, so it's basically a matter of deciding which set of side effects you find less objectionable.

Best wishes,

Chris

User

Posted 21 Dec 2022 at 10:04

Yes, it's if you want a shorter, but more unpleasant option (The removal) or the much longer term HT & RT option, - either way you will have side effects, but there will be no side effects if you are pushing up daisies - that is the real choice.

User

Posted 21 Dec 2022 at 12:24

Hi all

thanks for those replies, I have no knowledge of how big the cores are ,only just trying to learn this terminology ,have read that someone has had 20 cores taken, they said it was low grade and downgraded from a 3 + 4 to 3 +3 again all double Dutch to me re Gleason and it was not in any lymph glands at minute and localised. will look into the side effects of each treatment and prognosis for the appointment next week and I agree the alternative is not a good one re pushing up daisies ,thank you for been blunt.

best wishes

nick

User

Posted 21 Dec 2022 at 18:31

Originally Posted by: Online Community Member

Hi all

best wishes

nick

There are no easy answers, Nick - but at least, the treatment is a lot better now, than it was in the past.
My father did not fancy the treatment in the 1980s, & died aged 71
I'm now 74 & had RT & HT, the worst time of the HT was during the lock-downs, so my life was rather on hold, anyway 😆 My latest PSA was 0.37 & there was no Oncologyst concern with that.
About the only thing I'm left with, is the Bum is a bit sensitive & traps wind too much! Otherwise, not too bad.
Recent blood & pee tests, were OK & all I have is some blood pressure a bit high (Treated)
Have a great Xmas.

User

Posted 21 Dec 2022 at 20:47

Nick, welcome to the site although I am sure you don't wish to be here.

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

Go to the above link and either order or download the tool kit. It should give you lots of answers. You can call the number at the top of the page and speak with a specialist nurse , it is sometimes easier to have a real conversation than to and fro with posts. We have some very informed members on here than will help answer any questions. The more info you can give the forum should result in better help for you.

https://shop.prostatecanceruk.org/prostate-cancer-guide-for-men-who've-just-been-diagnosed

The above link may be a good one to download.

Remember there are no daft questions.

Thanks Chris

Edited by member 21 Dec 2022 at 20:52 | Reason: Added link

User

Posted 21 Dec 2022 at 22:10

Hi Bob it sounds as if the RT and HT has worked for you which is good pleased the psa down to a good level and blood and urine tests ok. I’m sorry about your dad that was very young, obviously treatments have progressed. I am going to ask if there is a nerve sparing specialist and there seems to be a speciality for this in the midlands, best not to disregard the local area specialists in West Yorkshire at this time I suppose hope they are experienced practitioners . I’m surprised there is no prostate nerve reconstruction clinics in the uk ,this seems to exist in the US where they can recreate the nerve but can only do this the same day the prostatectomy is done. Thanks for the advice.

you have a good Christmas also take care

User

Posted 21 Dec 2022 at 22:20

Hi Chris

thanks for getting in touch we are part of the club so to speak got to try and take some positives . I am quite impressed by the knowledge people have on here it’s all been very helpful. I will look for the number of the specialist nurse ,thanks for that, I downloaded the toolkit earlier today on the link I saw on someone else’s post but thanks for sending me the link. I need to know as much as I can before deciding about treatment at my appointment on 29th

have a good Christmas

User

Posted 21 Dec 2022 at 23:37

Nick, the number is at the top of the page , 08000748383. I was diagnosed a few days before Xmas 9 years ago, not the best Xmas present. Merry Xmas to you.

Thanks Chris

User

Posted 21 Dec 2022 at 23:58

" I am going to ask if there is a nerve sparing specialist and there seems to be a speciality for this in the midlands, best not to disregard the local area specialists in West Yorkshire at this time I suppose hope they are experienced practitioners ."

I think you may have the wrong end of the stick, at least a little bit. All prostatectomies are nerve-sparing unless the man's particular diagnosis indicates that the nerves should be removed.

St James's in Leeds is a regional centre of excellence and men are referred there from across West and North Yorkshire.

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

User

Posted 22 Dec 2022 at 08:07

Originally Posted by: Online Community Member

you have a good Christmas also take care

My treatment, was carried out at Addenbrooks in Cambridge - it seemed pretty popular, as folks I spoke to there, had come from all over the country - inc The channel islands !

User

Posted 22 Dec 2022 at 13:27

Can you give any links to the nerve reconstruction clinics you refer to the USA? I have never seen this mentioned but you do have the opportunity of instruction on ways and means of improving your sexual situation after Prostatectomy in the UK.

I note that you were at one time considering HIFU. Did you investigate your suitability for this? It is available on the NHS at a few places now, although mainly in London and the South East. It is available privately a little more widely but is quite expensive but still costs less than Prostatectomy I believe.

Edited by member 22 Dec 2022 at 13:34 | Reason: clarification

Barry

User

Posted 22 Dec 2022 at 21:33

Hi Barry I won’t address you as old out of respect. If you Google prostate reconstruction it’s the second link down THE INSTITUTE FOR ADVANCED RECONSTRUCTION ,US based mainly around New Jersey .it explains how this is done but have not gone deep into the success rate. I doubt our ‘not so NICE guidelines would allow this in the UK due to the cost, and whether effective etc, is it safe and all that.

I have an appointment next week where I plan to discuss HIFU to see what the reaction is and find out who is eligible.I will report what I find out. Thanks for that info.

best wishes

nick

User

Posted 22 Dec 2022 at 23:54

I think you have misunderstood, Malton. This is a niche technique for men who have to have non-nerve sparing RP - at this point, you have no reason to believe that you fall into that group.

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

User

Posted 23 Dec 2022 at 04:38

Interesting. Sometimes a patient is told in advance that he is likely to lose the nerve bundles on one or both sides of the Prostate but surgeons will try to preserve what they can and nothing is certain until the surgeon gets inside. So if indeed a man wished to improve his chances of erection, it looks like he would have to go to one of the branches in the USA to have his Prostatectomy as the grafting procedure immediately follows on from the Prostatectomy. This would doubtless be very expensive and might need further follow up in the US if a problem subsequently arose. Maybe somebody who has an appointment with a Urologist could ask about the procedure and whether it requires 'open' surgery and also if is it done in the UK and if so only privately only and with what success? It would seem that there is only possible benefit where a man knows he is likely not to have his nerve bundles spared.

Barry

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