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Prostrate operation

User
Posted 19 December 2015 20:28:22(UTC)
I have decided to have my prostrate removed in January 2016 and I have been told by my consultant that because the cancer is down both sides of the outer layer he will also have to remove the nerves also ,he explained that I will be able to have medication to help with an erection can anyone confirm that if all the nerves are removed is it possible to get an erection at all ?
User
Posted 20 December 2015 02:25:47(UTC)

Hi John, if all the nerves are removed then tablets such as Viagra or Cialis don't work. Some men get on okay with a vacuum pump and constriction rings - not perfect but the pump is available on prescription. Your consultant was probably referring to injections that you learn to inject yourself into the penis, or pellets / cream that you insert into the eye of your penis. These can be effective for men who have had all nerves removed but they don't work for everyone.

Have you seen an oncologist to find out whether you would be suitable for radiotherapy or brachytherapy instead?

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


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User
Posted 20 December 2015 22:27:28(UTC)

I don't think there is any suggestion that it is on the outsides of the glands or has escaped - he just says it is down both sides.

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


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User
Posted 20 December 2015 02:25:47(UTC)

Hi John, if all the nerves are removed then tablets such as Viagra or Cialis don't work. Some men get on okay with a vacuum pump and constriction rings - not perfect but the pump is available on prescription. Your consultant was probably referring to injections that you learn to inject yourself into the penis, or pellets / cream that you insert into the eye of your penis. These can be effective for men who have had all nerves removed but they don't work for everyone.

Have you seen an oncologist to find out whether you would be suitable for radiotherapy or brachytherapy instead?

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


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User
Posted 20 December 2015 09:14:55(UTC)

Hello ~John and welcome

You don't give any details of Gleason or PSA but then you're not asking for advice re other treatments but, like Lyn, I do wonder whether you have investigated any other treatments?

We can't control the winds - but we can adjust our sails
User
Posted 20 December 2015 09:29:24(UTC)

Hi John,

Your question has been answered above.

What sort of operation have you decided upon?

dave

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
User
Posted 20 December 2015 21:01:16(UTC)

Nothing at all selfish about wanting to continue the intimacy that you share. If you have to go the surgery route and have the nerves removed, the intimacy you now have will change but it won't be lost.

My husband was PSA 6.9 just before treatment and Gleason 3+4=7. The lower the figure first the better it is. Had it been 4+3 it would have been a little more serious and the options may have been different.

My 70+ husband had also had a hip replaced and he opted for Low dose permanent seed brachytherapy. I don't advocate any particular treatment path - that is for the individual to decide. All I can say is this one suited us. Even at our ages we still have our intimacy and although it wouldn't be too traumatic if we lost that at this stage of our lives, we can still share it.

Have you downloaded the Toolkit from this site's publications page. It gives lots of information regarding treatment etc.

You say you have been told surgery is the better options for you. I take it this was said to you by a surgeon?

The cancer being down the outside of both sides of the prostate means that he is saying it has broken out of the capsule? Am I understanding that that correctly ?Just want to get that bit straight.

Just because you have been booked in for surgery in January doesn't mean that you definitely have to go through with it on that date.
Make sure you have checked all your options before you commit to it. If it really is the only route open to you then you have no choice but at least if you have ruled out all other options you'll know you did your best to choose the right one for you.

I'm not saying it is the case for you, but sometimes surgeons only seem to suggest surgery and likewise oncologists only recommend their way of doing it.

Have you asked at all about the permanent seed brachytherapy?

Just be sure you are deciding on the basis of all the info currently available to you. We have to live with the outcome for the rest of our lives and we have to be happy to live with results and with no regrets.

If it has to be surgery, well Lyn and others with experience will be able to offer practical advice, there are a number of men on here in that position.

We wives are very supportive of our men. We love them no matter what this disease does to us and our relationships. It isn't our man's fault that PCa has decided to take away parts of our lives that we thought we would have until we are too old to worry about them!! In any case, there's more than one way to skin a cat !!

Good luck and best wishes in whatever you choose to do.

We can't control the winds - but we can adjust our sails
User
Posted 20 December 2015 22:27:28(UTC)

I don't think there is any suggestion that it is on the outsides of the glands or has escaped - he just says it is down both sides.

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


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User
Posted 20 December 2015 22:54:21(UTC)

John,

you appear here apparently having made your treatment choice? We all hope that you have done all the research that we would have done prior to doing so, we who are in the know now, would have done, with hindsight.

Your op is due in 9 days but until you go under the anaesthetic you can still change your mind.

Maybe you might like to give the details of your diagnosis and staging thus far? Give all the information you have and people here will give a view on where you are and what you mighty have as options?

Nobody here or elsewhere should tell you what to do or persuade you what to do, they will not have to live, or die prematurely, from the consequences. And those here who have undergone treatment and suffered or survived, maybe excelled, that does not necessarily mean that you will either suffer, survive or excel. Everyman recovers in their own individual way.

There will be some who will say "Oh, my partner had this and he regrets this bitterly now cos he needed extra "blah" treatment, curses the day he made that choice, FFS what was he thinking off, what a muppet, etc etc? But they don't know what the result may have been had they gone on a different course.

There is no CLEAR winner in the treatment stakes. Read this again. THERE IS NO CLEAR WINNER IN THE TREATMENT STAKES!!! IF, there was, all the others would have been discontinued by the NHS. Simply a fact of life, and economy.

I would suggest to you that if anyone attempts to guide you to a particular treatment, ignore them. As in feedback you ignore the top 10% and the bottom 10%. Similarly ignore the most vehement and the least enthusiastic suggestions.

BUT, above all read well, research thoroughly, and then make YOUR decision, AND go for it wholeheartedly, 100%.

There are no second chances mate. No looking back and reconsidering.

at

dave

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
User
Posted 20 December 2015 23:31:51(UTC)
Thanks for the reply,just to make clear certain points,it has not broken out of the capsule,but worried how long before it does, my wife is scared that it will and wants me to go for the removal I also felt this way at first but I am not sure now even though I have got my operation booked for 18th January or the week after my original preference was for the brachytherapy but the consultant didn't seem to think this was a good idea I may have to query this ,also thanks for the prompt I will download the toolkit.(just realised that's an appropriate name for it ) anyway thanks for any imput now or in the future - John
User
Posted 21 December 2015 00:15:01(UTC)

Hi Dave
In hindsight I think my consultant guided me towards the prostrate removal because of the cancer been down both sides but not broken through ,and because I had ,had both hips replaced there was limits to the amount of radio therapy I could have,I would have gone for brachytherapy as a preferred option.

User
Posted 21 December 2015 09:28:11(UTC)

Good morning John,

I am not any type of expert, but if your consultant says your treatment options are limited due to pre-existing conditions and suggest what they think is best, then you either accept what they say, or you go away and research it to establish if this is the case or if another consultant would go a different course. In which case your treatment choices are wide open again, or at least not confined to Hobsons choice.

If you are not happy, you still have options. We all have been where you are wondering what to do, what would be best for us? And we all had no clear steer as to which treatment is the best. All treatments MAY have various side effects, the most important one of which is LIFE.

And yes, there may come a time when the cancer may break out of the prostate. Rather like a roller coaster being hauled up a slope. The time to worry is when the clicking of the haul stops and the free fall starts. Unfortunately none of us knows when that time will be.

I feel for you and your uncertainty. Research should be done wisely, not too widely as too many options and contributions can muddy an already muddy picture?

My choice was made very quickly, and I have no regrets. But, others who chose the route I did, have had regrets. Despite having the same basic bits in the same general area, there are so many variances in outcomes, and this is what makes the choice so difficult.

I hope you can come to terms with whatever options you have and make a choice that you and your wife are happy with. And then go for it 100%. No looking back, no regrets.

regards

dave

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
User
Posted 21 December 2015 23:34:50(UTC)

Defo consider other options. If you need more time to do so then postpone the op ........ very very unlikely it will make much difference re. spread of cancer with your prognosis.

So important to make sure that YOU are happy with any treatment you are given and that you remain in control.

Take good care and try and relax and enjoy your Christmas.

dl

User
Posted 10 February 2016 16:31:44(UTC)
Hi everyone just an update ,I had my prostrate removed 15th January 2016 and my recovery has been fine ,I had the caphter out 8th February only three days ago but finding it difficult to deal with as I have no control at all over my water works ,I am doing the pelvic floor excercises but how long before I see any results,
I see my consultant 1st March and because when the caphter was removed I had no control I am booked at the incontinance clinic 15th March .
At present I have no control but doing the exercises hoping this helps.i have also found on the web that there are tenns machines and other makes that are specific for pelvic floor excercises I am interested in purchasing one in addition to me doing the daily manual excercises any input of if they are any good would be helpful.
Thanks John
User
Posted 10 February 2016 16:55:59(UTC)

Originally Posted by: Online Community Member
Hi everyone just an update ,I had my prostrate removed 15th January 2016 and my recovery has been fine ,I had the caphter out 8th February only three days ago but finding it difficult to deal with as I have no control at all over my water works ,I am doing the pelvic floor excercises but how long before I see any results,
I see my consultant 1st March and because when the caphter was removed I had no control I am booked at the incontinance clinic 15th March .
At present I have no control but doing the exercises hoping this helps.i have also found on the web that there are tenns machines and other makes that are specific for pelvic floor excercises I am interested in purchasing one in addition to me doing the daily manual excercises any input of if they are any good would be helpful.
Thanks John


Hi John,

It's still extremely early days for you yet in terms of regaining continence. Some are very lucky and regain continence almost immediately , others take rather longer ( months rather than weeks )
Hopefully you will gain continence sooner rather than later, but you have to be patient.
It may be an idea to ask to see a physio, they can check to make sure you are doing your PFE's correctly. The physio will be able to advise you about Tenns machines for PFE's. In my experience under normal circumstances providing your muscles are being correctly used a Tenns machine will not be necessary.
I still suffer from mild leakage and asked about Tenns myself..... my physio told me my muscles were strong and so there would be no benefit in using a Tenns machine in my case.
Keep plugging away with the PFE's but don't go overboard....it's more important to do 10 correctly than 100 incorrectly...

Best wishes for a speedy recovery

Luther

User
Posted 10 February 2016 17:56:19(UTC)

John, as part of your operation, they removed a section of the urethra, and then joined it back up again without the prostate. They probably had to remove both of the valves that usually hold urine in your bladder and then have stitched one valve back in place. John's surgeon described it as like trying to carry water in a sieve or colander in the early days after RP! 

So at the minute, the urethra (tube from your bladder to the tip of your penis) has got holes in it where they have been stitching it together AND your brain is having to re-learn how to open and close the valve (just like when a toddler is learning how to hold wee in until they get to the potty). A TENS machine ain't gonna heal the stitched area or re-train your brain ... only time will do that. If you are still having problems in a few months and it becomes clear that the muscles are not working correctly, you may be able to get a TENS machine from the incontinence service.

For now, a little patience and plenty of rest is the most important thing.

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


User
Posted 10 February 2016 18:46:57(UTC)

Hi John I had no control at first but it has returned slowly at first , sure yours will in time. I used to go on walks and just fill the pads , take your time and do not over do it , Andy

User
Posted 10 February 2016 19:07:31(UTC)

John,

You have been given some helpful advice. I would just add that you have recently had a major and intricate operation and it is very important that you don't do too much too soon. So you need to be patient in this respect too.

Barry
User
Posted 10 February 2016 23:20:18(UTC)
Hi John
Probably like the rest of us you knew that this could happen but the reality of losing control of something so basic can be hard to come to terms with.
Everyone is different but hopefully things will improve gradually.
Personally because I felt so well after the RALP but had the continence issue I have only had that to deal with and I really thought that it would be permanent. All I did was accept where I was but carried on with exercises and went about my day as normally as possible but accepting that I was now wearing pads and needed to be aware of available toilet facilities.
The lightbulb moment was realising that the various continence products were not an imposition but a means of dealing with a problem. Bit by bit things got better and although still not perfect it is not restricting me and I know that eventually I will get there.
Stick with it. Your body has been throuhh a major trauma and it needs time to recover and re-educate itself.
Kevan
User
Posted 12 February 2016 09:33:00(UTC)
Hello again John
Once all of the swelling in the groin area has subsided you could consider using a Conveen external catheter and leg bag. I had days when I was getting fed up with the pads getting wet so quickly and it was making me not want to go out. I found out about the Conveen system on the Coloplast web site. The cather is basically a condom with a tube on the end that connects to a leg back the same as the one you had after the op. I found it brilliant as it does not interfere with you continuing to work to control your bladder but you can move freely and don't have the pressure and discomfort of the pads. The orders were done through a company named Charter and they arranged a prescription with my surgery. You order new supplies on line and Charter arrange everything including courier delivery. They were brilliant, very fast and efficient.
Look up Coloplast on the internet, you have nothing to lose but like me you find it to be a boon.
All the best and sorry I did not mention this in my previous reply.

Kind regards
Kevan
User
Posted 12 February 2016 13:02:59(UTC)

John

Like Kevan I have used the external catheter and the good news, it is a life changer, the bad news is your consultant or incontinence nurse may not prescribe it at this early stage. Many urologist think it hampers recovery post RP, another down side us the do stick very well to the penis and even with a release spray you may start pulling and stretching the foreskin( assuming you have one).

I was lucky to regain my continence very soon after RARP but lost it 18 months later following a series of operations to the urethra. I was leaking upto 200 ml a day occasionally 170 ml in one go. After three months, almost overnight it has dropped to no more than 10 ml a day and I think it is still improving.

I was a big fan of PFEs, even used an app on my phone as an aid doing them. Following a post about the value of doing PFEs I stopped doing them but my continence has still improved, my incontinence nurse disapproves and said research shows they are beneficial.


Thanks Chris

User
Posted 12 February 2016 14:56:33(UTC)

John

 

after my RP I purchased one of these

 

http://www.amazon.co.uk/Super-Kegel-Pelvic-Trainer-Exerciser/dp/B003SBQ07A/ref=sr_1_16?ie=UTF8&qid=1455288510&sr=8-16&keywords=kegel+toner

 

Designed for ladies ladies after childbirth but can do the same for men and can help with erections, it claims, I was lucky as most of my nerves were saved. You may wish to consider it when things improve and the surgery heals and you feel stronger. It makes sure you are using the correct muscles.. Worked for me.  5 years on I still use it occasionally to keep muscles in tune

 

 
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