Not expected to retain potency

User

Posted 09 Mar 2018 at 13:29

Aged 62. Asymptomatic. 15mm cancerous tumour stage 2a, Gleason score 4+3=7, discovered after PSA 16.6 in November 2017, up from 2.2 the last time the GP bothered to test me in 2010. Cancer in 16 cores out of 42, left lobe only following template biopsy.

Have been advised to have non nerve-sparing RP and lymphadenectomy via da Vinci. “Not expected to retain potency post-operative”

Not impressed with that surgeon’s bleak outlook. Maybe I need a different surgeon!

Seeking other opinions and options. No rush.

User

Posted 10 Mar 2018 at 20:13

Another consideration is that the tumour is believed to be 15mm - not very small! You could try to ascertain how close it is to the periphery of the Prostate. See too how an oncologist views your situation. If you decide doing nothing for the time being you could be lucky but on the other hand you could miss the best window of opportunity for containment if not a cure. You need to establish as much information as you can about your particular situation and treatment options before making a decision.

Barry

User

Posted 10 Mar 2018 at 12:18

Deservedly or not pointing fingers isn't going to cure cancer, neither is being a happy bunny or a grump. So moving forward, second uro opinon is fine in itself. However if surgery turns out to be non sparring or unsuccessful (over the years I've read quite a few guys choosing the best uro going and not only finished up not having nerve sparring but also totally ignored afterwards). You need to be able to look back and note you looked at all options. So an onco meet is advisable.

Ray

Edited by member 10 Mar 2018 at 12:19 | Reason: Not specified

User

Posted 11 Mar 2018 at 22:00

Hi there,

Just to say in my opinion a guy being told he is ‘ unlikely to retain potency’ in addition to having cancer perfectly entitles him to have a ‘grumpy’ old git’ time!

So good luck with whatever decisions you do make.

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User

Posted 09 Mar 2018 at 16:39

I am not sure whether you have a bit of an attitude or just an unfortunate way of writing. The two things that strike me are that it is unreasonable to blame the GP for you not bothering to go and have further PSA tests - and that having insisted on "the best" 3 Tesla mpMRI and a template biopsy rather than a TRUS, why would you then dismiss the consultant's diagnosis and treatment advice?

I can think of one or two others that have joined this forum, been unhappy with their surgeon's advice that nerve-sparing was not advisable, managed to find another surgeon who spared the nerves and then - shock horror - have been devastated that the surgery was not successful and they have needed salvage treatment or been upgraded to incurable.

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

User

Posted 09 Mar 2018 at 18:06

Hi Bollinger As there is no national screening programme for PSA testing as yet ( controversial subject) the responsibility lies with yourself to get tested regularly and ask for blood tests as Lynn says.

As you had the template biopsy which hopefully has picked up the locations of the cancer more accurately your consultant will know how close it is to the edge of the prostate and that is probably why he is advising non nerve sparing.The MRI cannot show microscopic cancer cells that may have infiltrated the capsule wall or indeed beyond.

That's why my husband's surgeon gave similar advice although he did not say categorically that the nerves should go. We trusted him and decided to go for non nerve sparing as we wanted to avoid salvage treatment or worse if at all possible.

With hindsight as his post Prostatectomy histology showed the cancer completely contained we could have maybe opted for nerve sparing afteral however we would never blame the surgeon as it was our decision based on the facts before the op. The surgeon can only give you your best shot at success based on his own skillset.

If you don't believe him or have faith in him then yes you are probably better getting a second opinion but you may still not get the answer you want.

Have you thought about other treatment options other than surgery?

Good Luck with whatever you decide.

Ann

User

Posted 10 Mar 2018 at 04:40

Hi ladies,

Thank you for your replies.

Yes, I do have “an attitude” regarding my GP surgery. I have friends in America who have annual DRE and PSA tests who are always beseeching me to “get your prostate checked, they don’t bother in England”.

With that in mind, about two years ago, I was lying on the doctor’s couch in my underpants for something else, so I said the immortal phrase “While you’re down there - can you do a DRE?”

“We don’t do that anymore”, was his reply. Doctor knows best!

I presumed that my annual blood tests for cholesterol and liver function would include the occasional PSA, and it is only by chance that this GP (out of about a dozen in the practice) ticked the PSA box last November, otherwise I would have blissfully ignorant of Tommy the Tumour until next year, or maybe the year after, or whenever symptoms appeared. So Tommy and I have been bosom buddies for up to seven years, possibly longer, just for the sake of a test tube of blood or a rubber glove and a blob of KY Jelly.

When I had the template biopsy, another recovering patient in the bed opposite had had a TRUS biopsy last August, which was not found to be accurate enough for his extensive cancer, so he was sent for a template biopsy, but had to wait six months for it. I left him in agony on the day case ward, attached to a catheter. They offer TRUS to save money, yet in Coventry, the hospital PAYS the car parking firm £600,000 a year to charge patients £2.70 to park for an hour and far more for longer.

So, yes, I am off to see a leading Professor of Urology in ten days, who will also tell me I still have cancer.

If I sound like a grumpy old git, it’s because I am! 😂😂😂😂

Edited by member 10 Mar 2018 at 05:12 | Reason: Not specified

User

Posted 10 Mar 2018 at 10:29

No. You and the cancer may have been acquainted for a number of years because you never checked with the GP practice that your PSA results were okay. If you had asked for your result in any of those years, someone would have told you that no PSA test had been done.

The main strength of the TRUS over the template biopsy is that it can be done without general anaesthetic. You might not be bothered but for many people, the primary consideration will be avoiding GA unless absolutely necessary. My three men all managed to get diagnosed with a normal TRUS as do most men who end up on this treadmill.

Perhaps you could go to America for your treatment if you don’t like the NHS.

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

User

Posted 10 Mar 2018 at 10:47

Good luck with with your Retzius sparing surgery if that is the route you take although I am slightly puzzled as to why you didn't say on this thread ( but posted it on Rafael's thread).

That you had booked an appointment weeks ago to see someone else later this month.

I hope the NHS does you proud as it has done for my husband so far. We will be

eternally grateful to husband's lovely hard-working dedicated surgeon who did not relieve us of £15-£20,000 yet still seems to have cleared the cancer.😋

User

Posted 10 Mar 2018 at 10:48

Lyn, may I call you “Matron”?

My only complaint has been about the GP service, particularly he of “We don’t do DREs these days”. The first thing the Urologist said after my MRI was: “Up on the couch, pants down”.

My hospital treatment on the NHS, post-raised PSA, has been timely, exemplary and to the highest standard I would expect to find here, in the USA or anywhere else. Except for the car parking at the hospital, of course!

I am pleased to read that your John seems to have achieved a happy ending, if you pardon the expression.

I hope to do the same when Tommy and I part company, whenever and by whatever method.

User

Posted 10 Mar 2018 at 11:00

Originally Posted by: Online Community Member

Good luck with with your Retzius sparing surgery if that is the route you take although I am slightly puzzled as to why you didn't say on this thread ( but posted it on Rafael's thread).

That you had booked an appointment weeks ago to see someone else later this month.

I hope the NHS does you proud as it has done for my husband so far. We will be

eternally grateful to husband's lovely hard-working dedicated surgeon who did not relieve us of £15-£20,000 yet still seems to have cleared the cancer.😋

I have not booked any surgery whatsoever as I am a great believer in the proven “No-Knife” procedure where appropriate.

Once I had a hint I might have cancer I started extensive research into the subject, aided by a friend who had done much of the research before which he was happy to share with me, saving hours of groundwork.

I then researched the most eminent urological surgeons in Europe, some of them pitched up in London, and thus I booked a consultation with one of them I fancied prior to my diagnosis. Hence my appointment later this month.

He will still tell me I’ve still got cancer.

User

Posted 10 Mar 2018 at 12:18

Ray

Edited by member 10 Mar 2018 at 12:19 | Reason: Not specified

User

Posted 10 Mar 2018 at 13:33

Well, the Retzius procedure is another form of surgical removal and uses 'cut and shut' to use an automotive term, so I can't reconcile this with the statement that you are 'a great believer in the proven "N0-Knife" procedure where appropriate'. Is it that you mean as in some forms of surgery the cutting is done with a type of laser rather than a scalpel?

Barry

User

Posted 10 Mar 2018 at 14:20

Originally Posted by: Online Community Member

No Barry, “No-Knife” means I am not in a hurry to do anything at all right now.

I will take advice, and take it from there. We are told that PCa is a slow-growing cancer, and it could be anything from a kitten to a tiger. I suspect Tommy the Tumour is a feral cat.

I am completely chilled with my diagnosis, there has to be some cause of death on your death certificate, it’s the date on it which is most important.

If I had lung, liver or pancreatic cancer, or was Gleason 8,9,10, T3 or T4 my attitude would not be so light-hearted.

I am weighing up all my options, including doing nothing at all, if at all, and enjoying my current perfect health (except for.....) and learning more every day from specialists and sage counsels such as yourself and Matron Lyn on websites like this one.

Many thanks for your input.

User

Posted 10 Mar 2018 at 15:20

Hello Bollinge, are the doctors likely to suggest doing nothing?

I would have thought that with a Gleason 4+3 you will have to do something sooner rather than later.

Best wishes, Ian.

Ido4

User

Posted 10 Mar 2018 at 15:33

Originally Posted by: Online Community Member

Lyn, may I call you “Matron”?

You could but since you are significantly older than me, perhaps 'little sister' would be more appropriate https://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-kiss.gif and if you are here long enough to read all the back stories and understand the subtleties of this disease, you will see that none of my men have had nice well behaved cancers.

The retzius sparing RP is an exciting development although not really as new as the Prof's (private company) marketing machine makes out - it used to be called radical perineal prostatectomy in the old days. Nothing wrong with re-inventing the wheel and adding improved features though.

Re Ido's comment, I assume that if the first surgeon was recommending non nerve-sparing, then AS is certainly not an option. Taking your time to see a range of consultants is sensible - I hope that you will also explore IMRT and brachytherapy before making a final decision?

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

User

Posted 10 Mar 2018 at 16:19

Not wanting to sound pessimistic but there is always the possibility that your Gleason score could be higher and also your stage.( Hopefully not)

It is only if they actually remove the prostate and look at every part of it under a microscope can they say you are definitely 4+3 and stage 2.

The DRE, biopsy and MRI can only give so much information pre treatment.

I would have thought that having more Gleason 4 than 3 would indicate that AS would not be wise.I have read many men's experiences on here and 4+3 is certainly no pussycat to play around with.If you were my husband I would be wanting him to get on with it and seek your other options as soon as possible.

Regards

Ann

User

Posted 10 Mar 2018 at 16:43

Thank you all for taking the time to comment.

After prostatectomy, does subsequent histology ever result in a down-graded Gleason score?

User

Posted 10 Mar 2018 at 16:47

It can but much more likely to go the other way.

User

Posted 10 Mar 2018 at 20:13

Barry

User

Posted 11 Mar 2018 at 04:31

I am having another PSA test next week (only my third ever) six weeks after my template biopsy and five months after my second PSA ever last November.

The irony is I have never felt so well! Obviously I will have to say ta-ta to Tommy at some point!

User

Posted 11 Mar 2018 at 11:59

Originally Posted by: Online Community Member

After prostatectomy, does subsequent histology ever result in a down-graded Gleason score?

Statistics are 1/3 of removed prostates are upgraded on pathology to a higher Gleason, not many downgraded.

Some PCas are fast growing. My PCa was fast growing, PSA 3.6 rise / year.

Edited by member 11 Mar 2018 at 14:42 | Reason: Not specified

User

Posted 11 Mar 2018 at 22:00

Hi there,

Just to say in my opinion a guy being told he is ‘ unlikely to retain potency’ in addition to having cancer perfectly entitles him to have a ‘grumpy’ old git’ time!

So good luck with whatever decisions you do make.

User

Posted 22 Mar 2018 at 09:25

Have just had a consultation with the Professor in London, and he says it’s time to say ta-ta to Tommy and he will do a Retzius AND nerve sparing (depending what he finds) RP on the NHS in the near future. Couldn’t be more pleased.

Edited by member 22 Mar 2018 at 09:33 | Reason: Not specified

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