PSA of 3.7 to Radical Prostatecotmy in 4 months at 54

User

Posted 27 May 2018 at 14:53

Hello everyone,

I just wanted to share my experience of this knowing how useful it has been to read so many stories here over the past few months.

My wife sent me for a PSA test in January (no symptoms) -an elective follow up from one ,three years ago after which my GP said there was nothing to worry about. He was wrong as it was 2.4 then aged 50 but he chose not to disclose this to me and I didn’t understand the relevance then

Got the results 3.7 the new GP did his DRE said all normal- again incorrect

I asked to be referred and the specialist said in his opinion something was there and sent me for an multiparametric MRI which was reported as grade 3( suspicious ) Next step was grid biopsy the result of which was Gleason 7 (3+4) 95% 3 ,5% 4.

This was followed by a bone scan which was scary and apparently of questionable necessity. Anyway ,they gave me the all clear there and then.

We were given three choices:

Active Surveillance

Radiotherapy

Radical prostatectomy

At this point we discussd the pros and cons and decided that we wanted to obviate the risk of spreading cancer. We got rather concerned when the surgeon asked how important your sex life is! He said a large number of his patients aren’t interested in it anymore!

Alarm bells rang and we went on a mission to find another surgeon. After lots of research we came across [removed by Moderator] operating out of the Royal Marsden.

He initially said that he thought that surgery was not necessary. After his team reviewed the results of the tests it became apparent that the operation was on the cards. We know that [removed by Moderator] is probably the best in the UK at achieving clean margins. Also doing the surgery robotically, he was very concerned and keen to preserve all possible nerve function respecting that sex is a crucial part of life when you are only 54.

Communication and confidence from [removed by Moderator] was first class. He called us repeatedly, replied to emails regularly and is generally the type of kind, passionate surgeon that you hope to meet but seem rarely to manage to do. Also he’s young and smart- going down to surgery on the day of the operation the anaesthetist remarked how well we had done to find [removed by Moderator] as he's the top choice for other surgeons with prostate cancer

Today , two weeks after the operation I can confirm he delivered and then some! I’m experiencing no incontinence and even managed to have (careful) sex with the help of a pill - everything is good.

The only negative thing is that I feel so good that I probably overdid it yesterday and realise that I do need to take it easy..

Top tips:

Don’t trust your GP

Go to [removed by Moderator]

There’s life after prostate cancer

Edited by moderator 27 May 2018 at 18:40 | Reason: Removing Doctors name throughout.

User

Posted 27 May 2018 at 14:53

Hello everyone,

I just wanted to share my experience of this knowing how useful it has been to read so many stories here over the past few months.

Got the results 3.7 the new GP did his DRE said all normal- again incorrect

This was followed by a bone scan which was scary and apparently of questionable necessity. Anyway ,they gave me the all clear there and then.

We were given three choices:

Active Surveillance

Radiotherapy

Radical prostatectomy

Alarm bells rang and we went on a mission to find another surgeon. After lots of research we came across [removed by Moderator] operating out of the Royal Marsden.

Today , two weeks after the operation I can confirm he delivered and then some! I’m experiencing no incontinence and even managed to have (careful) sex with the help of a pill - everything is good.

The only negative thing is that I feel so good that I probably overdid it yesterday and realise that I do need to take it easy..

Top tips:

Don’t trust your GP

Go to [removed by Moderator]

There’s life after prostate cancer

Edited by moderator 27 May 2018 at 18:40 | Reason: Removing Doctors name throughout.

User

Posted 28 May 2018 at 14:18

Hi Duncan,

A really useful thread. Thank you

The issue of transparency is improving but still has a long way to go in my opinion. The NHS intent seems really good allowing individual surgeon performance data to be looked up

https://www.nhs.uk/service-search/performance-indicators/organisations/hospital-specialties-urological-surgery?resultsViewId=1127&metricGroupId=550&radius=400&locationId=0&isNationWide=True

However the data then provided does not cover the key questions about incontinence and sex life.

It would be fab if the NHS adopted the prize winning live prostate surgery results system

https://www.birminghamprostateclinic.co.uk/prostate/live-results

This is much more transparent data showing currently for men aged 50-59 in the index category ( no ED before surgery) out of 104 men having an RP at the 12 month stage 42 men did not have an erection (even with pills) sufficient for full sexual intercourse.

https://www.birminghamprostateclinic.co.uk/prostate/live-results/erectile-function-12-month-results/?ageRange=50-59

It would be great if the MyNHS drill down on each surgeon data included these questions and even better if 'sufficient for full sexual intercourse' was analyse into erection strength and stability as before the RP and less than before the RP.

How fab that your surgeon asked how important your sex life is!

I am sure its true that 'a large number of his patients aren’t interested in it anymore!' but for those who are it is as you say a crucial part of quality of life.

Great to hear such a positive story and here's hoping improvements that are being made in transparency of performance continue.

Thank you for sharing.

Clare

Edited by moderator 16 Apr 2024 at 09:26 | Reason: Not specified

User

Posted 28 May 2018 at 23:53

Clare, if you go back into edit and click return at the end of each hyperlink, it will turn purple. Save and close; it then becomes active for everyone reading.

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

User

Posted 29 May 2018 at 00:25

The data issue is worse than can be imagined. Some urological surgeons decline to publish their stats even though they are mandated to do so. Some cherry pick and will only take the most straightforward cases, so their data looks far better than others. Some, like our uro, take on more complicated cases that don't always have perfect endings so their stats look not so great.

Add to all that the NHS / NICE defintions of success criteria. 'Continent at 12 months post op' is defined as using one pad or less per day; some members on here who use 1 pad per day would be very angry at the suggestion that it is no big deal. And erectile function is defined as being able to get an erection naturally or using chemical or mechanical assistance; it is not necessarily the case that men who can get some thickening with a pump or injections or whatever will actually be erect enough for penetration. Say nothing about whether EF at 12 months will include there still being enough length or girth to be useful.

The reporting data system is a shambles and not worth the paper it is written on. For the first few years, John's uro used to ask him to complete the EPIC-CP questionnaire before each appointment and then went through it with us but not many of the members on here at the time had even seen it!

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

Show Most Thanked Posts

User

Posted 27 May 2018 at 19:00

Great story, Duncan, and welcome to "the club that nobody wants to join". As you can see from the edits a moderator has made to your post, the board rules don't allow us to name medical staff here.

Anyway, welcome on board!

Chris

User

Posted 27 May 2018 at 21:03

Thank you Chris, not sure I really understand the surgeon name removal. The hardest thing aspect was finding the right surgeon who would clear the cancer when you are under pressure to make a decision.

My surgeon was a specialist in robotic radical prostatectomy, his results are equivalent to the best-published results in the world for cancer margins, continence and potency. People ought to at least know to look surgeons up on the BAUS audit so they have an objective opinion to rely on

User

Posted 27 May 2018 at 21:33

It was a clearly stated rule when you joined earlier today. All is fine when people are posting good things but members may also write about when things have gone badly, and advise others against a particular specialist which would open the charity up to all sorts of legal implications. The top guys at RM are well known to many of us for their cutting edge research and desire to move PCa surgery forward but we don't need to name them to know who they are.

Technically, I think the rules say that we are not allowed to name hospitals either, but almost everyone does. It is fine to name a specialist when quoting their research though.

You do seem to be taking some risks so soon after surgery; be cautious of giving yourself a hernia - they are a risk after robotic RP and more so in men who do not give themselves time to heal properly.

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

User

Posted 27 May 2018 at 22:03

Thank your for the note of caution. You’re right and I am aware of the risk. Its quite hard to know how much to rest. Im walking and that’s about it. Not planning any real exercise for a few weeks.

Edited by member 28 May 2018 at 21:32 | Reason: Typo

User

Posted 27 May 2018 at 22:51

Glad to know things are going so well for you. Just one further point; if that is your true name you might consider removing part of it from your profile and your avatar - some feel it can attract unwelcome attention, but up to you.

Barry

User

Posted 27 May 2018 at 23:14

why did the surgeon change his mind about the surgery?? I assume the alternative was AS??

User

Posted 28 May 2018 at 08:43

He tries hard not to operate and his initial feeling was wait. Once all the results were reviewd by him and the team at RMH the consensus was to operate mainly because of the MRI . It wasn’t great to go up and down like that but I think I would prefer to have surgeon who actively avoids surgery. Apparently the modern trend is to avoid operating when it‘a Gleason 6 and I was just into 7. We had had so much stress and anxiety by then though that we‘re glad it’s gone. As it turned out,the ca was in two places anyway and even with a templated grid biopsy they can miss bits.