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Just diagnosed - advice please

User
Posted 03 May 2016 15:01:28(UTC)

Hello everyone. Last Friday I was diagnosed with PC (Gleason score 3+4=7, with a PSA of 5.1 and 3/10 cancerous biopsy samples. My nearest hospital, RUH Bath, has offered me radical prostatectomy or HT+RT, as the possible treatments. I know there are pluses and minuses for each but was wondering if any similar aged chaps (I turned 51 a month ago) had any advice or experiences they'd be happy to share with me before I make a life-changing decision which I might regret.

I am currently favouring the op. but am fearful of ED implications.

Many thanks in advance

User
Posted 03 May 2016 15:48:10(UTC)

That's a good point. But never heard of them. But if you go on HT then your libido is suppressed substantially anyway. I'm taking Bicalutamide which is one of the HT that helps keep libido. I have to admit though that if anything I'm frantically horny at the moment , possibly in reaction to being fully impotent now. If you have injection HT it completely stops you producing Testosterone and is known as chemical castration. Many men on this have zero libido.
I'm finding copious amounts of red-wine is doing the trick haha ( no wonder I'm impotent )




If life gives you lemons , then make lemonade
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User
Posted 04 May 2016 20:13:30(UTC)

A higher proporation of younger men have surgery as their primary treatment. (This can in need be followed by RT which is very difficult to do the other way round and few surgeons will do it). This gradually changes as men are diagnosed when they are older with RT becoming more usual. RP results in more severe incontinence and for a few this can be permanent. However, further down the line with RT there is a risk of a further cancer being initiated. For suitable candidates HIFU may be worth considering, though there are few places in the UK that do it at present.

I would recommend obtaining the 'Toolkit' available through publications on the main part of this Charity site and weighing up all the pros and cons of treatments you may be suitable for.

Barry
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User
Posted 03 May 2016 15:34:24(UTC)

Hi Miles
So sorry to hear your diagnosis. Please click my picture and feel free to read my profile. I'm 48. It is impossible to advise I'm afraid. As everyone said to me , if you love life , then eradicating the cancer has to be the first concern , the side-effects second. Please order or read or download the toolkit available on this site under ' publications ' or phone the amazing nurses. Fully swat up on the treatments so you understand the implications and best outcomes. Even the Onco and Uro doctors don't have a crystal ball. My chance of HT/RT was withdrawn and I was urged down the surgery route but far too late , and now will be on HT for life probably. I desperately desperately didn't want to become impotent , but I am unfortunately still 10 months after the op despite every single effort and relative youth and double nerve sparing. It has had a huge impact on my well-being , and obviously in hindsight the HT/RT would have been better. There are far more clever people on here with good advice to give. I'm afraid whichever path you choose ED will likely become reality.
All the very best
Chris




If life gives you lemons , then make lemonade
User
Posted 03 May 2016 15:41:19(UTC)

Many thanks for the frank and honest reply, Chris - much appreciated. Sorry to hear about how your choice went. Did you consider seeking libido suppressants cos if I end up with ED then that's something I'm keen to find out more about?

User
Posted 03 May 2016 15:48:10(UTC)

That's a good point. But never heard of them. But if you go on HT then your libido is suppressed substantially anyway. I'm taking Bicalutamide which is one of the HT that helps keep libido. I have to admit though that if anything I'm frantically horny at the moment , possibly in reaction to being fully impotent now. If you have injection HT it completely stops you producing Testosterone and is known as chemical castration. Many men on this have zero libido.
I'm finding copious amounts of red-wine is doing the trick haha ( no wonder I'm impotent )




If life gives you lemons , then make lemonade
Thanked 1 time
User
Posted 03 May 2016 17:11:51(UTC)

Hi there you can also check my profile out. I was 53 when diagnosed.

I had RP but had to have follow up RT as well but 2.5 years on my PSA is undetectable.

What i would say is if you choose the surgery route make sure you have a very experienced surgeon...with hundreds if not thousands of these ops under his/her belt. Discuss their success rate with them regarding side effects and discuss what they think about possible side effects for you. Hopefully they could offer nerve sparing surgery. You may wish to discuss after care and penile rehabillitation...whats on offer?

Its a difficult decision that only you can make so do your research but only on reliable sites etc

User
Posted 03 May 2016 19:02:21(UTC)
Hi Miles,
I had my open rp op at the beginning of March (aged 54), my priority was to get rid of the cancer and if that meant ed then so be it. My surgeon did manage to nerve spare on both sides and have been on cialis for a month now and at the moment the ol boy is showing a few signs of life, that said there is of course no guarantee that improvement will continue but I'm hopeful. I wish you all the best in whatever decision you make.
Cheers
AL
User
Posted 03 May 2016 19:48:42(UTC)

Hi Miles,

I'm older than you ( a lot  )  ( 65 in early May ) 

My clinical staging  was T2b with 6 of 12 cores positive.. all on one side with a Gleason of ( 3+3 ) = 6

I had da Vinci surgery almost 2 years ago..... 

Post op histology was pT2c and Gleason of ( 3+4 ) = 7 with nerves spared on one side only...

Cancer appears to be eradicated at the moment....

ED is still an ongoing problem ... but getting there

I would suggest that whatever treatment path you choose, radical treatment of any kind will more than likely result in ED to some degree..

Recovery rate and success is unique to each individual. 

My advice would be to wait until you have the full set of results in front of you before you decide and make a choice of treatment...
Active Surveillance could be an option for the time being? 

I can't comment on RT as I haven't had that treatment yet.... ( hopefully I wont need it )

But if you go down the surgery path ED will almost certainly occur immediately post op..... recovery rates  will be dependant on the degree of nerve sparing ( if any ) and how successful the surgeon has been in preserving those nerves.. 

Luther

 

User
Posted 04 May 2016 15:40:06(UTC)

Great advice Brian and many thanks for it and for you detailing your experiences.

User
Posted 04 May 2016 15:44:31(UTC)

Thanks for the reply AL. Really brilliant news (touch wood - ooer!) re your penile progress - it's real life news like that which gives me hope as I am normally a very positive person. Much appreciated.

User
Posted 04 May 2016 15:50:46(UTC)

Many thanks Luther and wise words, and great to hear that the cancer appears to have been eradicated. Am expecting short term ED and will definitely ask the surgeon to do their best re nerve sparing as the thought of not being able to get hard for the rest of my life leaves me depressed and questioning my virility/status as a man.

User
Posted 04 May 2016 16:05:39(UTC)

Hi Miles.

 

Is it just me or we PC victims are getting younger?

I assume that the fact you were offered surgery your MRI/CT/Bone Scans were all clear?

Everything I've read so far indicates that Surgery does not produce better results than RT+HT....(If anyone knows differently please let us know)..... and the side effect of surgery can be a LOT worse than RT.

However.....IF you have a low PSA+No Mets+low Gleason.....then your options are much greater.

By the way...how did you find out you had PC? Did you simply asked your local GP for a PSA?

 

Regards

User
Posted 04 May 2016 17:23:08(UTC)
Bill,
I agree the age seems younger, especially as 2 years when I was diagnosed at the at the age of 57, I was told that I was very young for T3a. And again at the RT centre the same story - you're our youngest patient !

Now I feel a really old man at 59.

John
User
Posted 04 May 2016 20:13:30(UTC)

A higher proporation of younger men have surgery as their primary treatment. (This can in need be followed by RT which is very difficult to do the other way round and few surgeons will do it). This gradually changes as men are diagnosed when they are older with RT becoming more usual. RP results in more severe incontinence and for a few this can be permanent. However, further down the line with RT there is a risk of a further cancer being initiated. For suitable candidates HIFU may be worth considering, though there are few places in the UK that do it at present.

I would recommend obtaining the 'Toolkit' available through publications on the main part of this Charity site and weighing up all the pros and cons of treatments you may be suitable for.

Barry
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User
Posted 04 May 2016 22:55:54(UTC)

Hello Miles...

We are of course all different and what is good for one will not necessarily be good, or successful, for others - but here goes with my journey so far..

Like AL I had an open RP just over 6 weeks ago with double nerve sparing (Age 64). My original stats were T1 Gleason 3+3 and my post op stats are pT2 Gleason 3+4 all contained within capsule and with nothing at the margins.

Also like AL, my priority was to get rid of the cancer and I chose carefully the consultant surgeon that I wanted to "do the deed" (he has done well over 3,000 and so is very experienced). If you choose RP: others have said that you should look at your prospective surgeon's experience - and I agree with that - especially if you want nerve sparing. The more they have done the better they will be.

I am now on medication for ED and there are good signs on that front! Incontinence wise - I am virtually dry - certainly dry at night and when sitting at work - and I only get very small dribbles when doing activity such as 5 mile hill walks in the Lake district! Since the first two weeks after the op I have only ever needed to use one small (medium grade) pad in a 24 hour period - maybe I am lucky?

Hope this is of help to you in considering your options. Good luck whatever way you go.

KRO

User
Posted 04 May 2016 23:18:24(UTC)

Originally Posted by: Online Community Member

Many thanks for the frank and honest reply, Chris - much appreciated. Sorry to hear about how your choice went. Did you consider seeking libido suppressants cos if I end up with ED then that's something I'm keen to find out more about?

 

I would be really sad to think that any man would take suppressants simply because he couldn't get an erection. ED is hard to imagine until you experience it, but make no mistake - men with ED can still orgasm and most can have a fulfilling sexual relationship. If you have a partner, they might be very sad to think that you wouldn't want to still meet their needs and find ways to be intimate together.

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


User
Posted 31 May 2016 16:33:59(UTC)

Hi

Have you managed to make a decision yet ?    I had Da Vinci RP Feb 2015 (Diag Nov 2014,first and only biopsy, no symptoms at all). Gleason 7 (4+3)  and PSA had moved to 7.5 within 1 year from 5.2 (I had PSA tests, which I requested for 8 years)

I was very well informed by Hospital, (The GP not in the 'link' at all, albeit not an issue) however did take time to absorb everything.  Looking back you do need time and not be rushed; to attempt and make the most effective solution.

The priority for me was :  Find out and ask questions about my biopsy, get informed as best you can. (obviously the web is a great resource)  so in this order ..  1. Give me the best chance re. tumour cell destruction/removal (as consultant said it's not the amount that exists it's how active it is or likely to be ..  ..  )  2.  Hopefully not be incontinent  3.  Not have any long lasting ED.

Me and wife decided on RP, on basis it gives a 'baseline' re PSA; as needs to be at or near  zero (0.01).  Thankfully mine still is. Again there are plus/minus to how you view this.   Regular PSA monitoring does raise anxiety levels; probably more for my wife than me.   I guess we always want more..  I'm grateful to be as free as possible, in hospital for 1 overnight stay (out at 5pm);  had catheter for 7 days only and incontinent for just one day after. ED is work in progress.   Obviously no sensation of fullness, as zero ejaculate, all takes time to get used to.  The whole body/mind will take time to adjust, and can recover as so many nerves are damaged, probably more RP than or RT.  Again issues re. whether seminal vesicles are removed completely (as saw a reference on web about 'tips' being left, maybe this has been superseded)   

The more you research, the more you discover you don't know  .. 

  Hope this helps and all the best.              

 

User
Posted 31 May 2016 18:40:45(UTC)
I'm 67 and had an RP in July 2014. Pre op PSA was 15 and Gleason 3+4 with positive margins. Post op PSA was not deemed to be low enough so I opted for RT in January 2015. My PSA last week was 0.017
The oncologist said I'd be unlikely to have a natural erection again after the RT, but as has been said, it's better to still be alive!
I was pretty thorough with the pelvic floor exercises and have had no problems with incontinence.
However, it's not all doom and gloom. I was given a pump and have been using Muse pellets with great success. In July 2015 I managed to get an unaided erection, not as good as pre op but not bad. This has continued but you have to keep at it! At my 6 month check up last week - the oncologist said use it or lose it - it's like a muscle, you have to exercise it regularly.
The pump works well and is enough for penetrative sex. Muse used in conjunction with the pump works very well.
Maybe I'm lucky, but all is not necessarily lost!
Good luck with everything
Guy
 
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