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What next, after surgery?

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User
Posted 19 Apr 2018 at 10:24

I thought it would be time to post here how I am doing after surgery.

I had surgery on April the 5th 8 am and it took 4 hours. I didn't feel much pain to be honest or they kept it controlled during the time I was in hospital, which I left Sunday - 3 days after surgery.

According to the doctors the surgery went technically well. As far as they could be able to see so it seems the "thing" was confined to the gland and I had the right side nerve spared. I believe these were good news because there were fears there was extracapsular invasion. Of course the pathological report will have to confirm this. I had around 15 lymph nodes removed.

The part of the lymph nodes removal procedures is what is still causing me a lot of discomfort as it creates still some liquids in the lower part of the belly. This is causing me some pain some times but mostly as it swells I get relieved only when laying down.

I had the catheter removed 6 days after surgery and gained continence 2 hours after its removal. It stayed this way for 3 days. Now I have some times when I have leakages and this is the part of this whole surgery procedure that is frustrating me as for the rest I am seeing and feeling improvements... Why would that be that I was completely continente for 3 days and now not always so? I don't wear any pad during the nights though and I have been kept dry always. I do the kegel exercises twice a day and I feel I cannot do more because the muscle hurt after sometime. Am I doing ok?

Today is the 5th day I am taking cialis - precribed by doctor - and I was told to start stimulating my penis which I am doing and I now I know what an orgasm without erection is https://d37jpvxvnmgnc2.cloudfront.net/aurora/images/smiley/smile.gif They were very weak though.

I guess that is it. Happy to receive any comment. I have a doctor appoitment by close the end of this month and by then we should be knowing what the pathological report says.

Thank you,

User
Posted 19 Apr 2018 at 21:29

Paulo

The key think is regular "exercise" and kegels.

The reason I say this is that I am lapsing and feeling the side effects.

When I work at it, things hapopen. When I get fed up and slide, ED and incontinence gets worse.

It is a bugger but your emotional and phsyical state are tied up.

Regarding orgasms, mine were more intense whilst I was healing, presumably due to nerve sensitivity. Now that I am healed, it is ... odd. I miss the old days but one has to make do. A rusty nut is better than no nut :) :) :)

Pete

User
Posted 21 Apr 2018 at 08:04
Hiya Paulo,

Try and make Kegels part of your daily life.I ended up doing them almost unconsciously when driving,watching television etc! I also mentioned to the urologist that my enthusiasm had made the area ache occasionally, he said that if we exercise our biceps we expect some ache,so he recommended I continue.Like Pete said if we let things slide we often suffer psychologically which affects our outlook and positivity. Keep at it Paulo.All the best.

Paul

User
Posted 22 Apr 2018 at 08:06
Morning Paulo,

Yes, a week after catheter removal is too early to judge too much yet.At least you were confident enough to be out and about.

Cheers,Paul.

User
Posted 22 Apr 2018 at 08:50
Hi Paulo

It sounds as though you are doing very well considering that it is very soon after your operation and catheter removal. I found that that the continence recovery moved in stages and the last bit was leaking while walking. If it is any help to you I can tell you that your progress is so much quicker than mine was but it got there in the end.

All the best

Kevan

User
Posted 22 Apr 2018 at 21:12

Do you think you might be overdoing it - doing too much too soon can affect continence recovery and increases the risk of hetnia

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

User
Posted 23 Apr 2018 at 21:32

Originally Posted by: Online Community Member

Hi Pete,
The survey is no longer in that link!
Thanks, Paulo

Paulo

Well spotted - I had a stray full stop :)

Background here if you are interested https://community.prostatecanceruk.org/posts/t15956-Invitiation-to-take-part-in-cancer-counselling-thesis-research#post182657

Pete

User
Posted 24 Apr 2018 at 00:27

I don’t think going out is a problem but getting overtired is - shopping may have included lifting, bending or pushing ... all of which you shouldn’t be doing. Enjoying a nice lunch somewhere never harmed anyone. I assume you are not driving as you are unlikely to be insured this soon - but driving also puts pressure on the wound area.

Do the good days follow an easy day, and the bad days follow a day when you went shopping?

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

User
Posted 24 Apr 2018 at 18:44
Paulo

After my surgery I complied with the DLVA guidelines and was driving after 4 weeks. It was pointed out to me that when I took out my insurance policy I agreed to their conditions and they may have different views to the DLVA and the NHS. Might be worth a ring just to make sure.

Sounds like your recovery is going well, keep mobile but no marathons.

Thanks Chris

User
Posted 24 Apr 2018 at 22:15

It's another 'lucky dip' isn't it - our uro explained it all in detail the first time we saw him, although he knew that we were already aware because of my dad and father-in-law (who were both already under the same uro). However, explaining the theoretical risk of ED, incontinence, recurrence, penile atrophy and anything else was not the same as J understanding or believing it ... he simply believed that being young, none of it would actually apply to him.

I think that is probably true for many doctors; they will mention the risks (or hand over a leaflet - as it happened, Mr P handed us a PCUK toolkit to take home and read) but that doesn't necessarily mean that the patient a) takes it all in or b) takes it seriously. John used to tell me that knowing ED was a risk was not the same as having ED - it sounds like you might not always be able to get an erection but there is no way of imagining what it is like not to wake up with a lazy lob, to never wake up in the night with a hard on, that you might get erect but it will be too small for normal positions, to have a willy so short you can't wee in a urinal. How can anyone imagine that until they experience it?

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

Show Most Thanked Posts
User
Posted 19 Apr 2018 at 21:29

Paulo

The key think is regular "exercise" and kegels.

The reason I say this is that I am lapsing and feeling the side effects.

When I work at it, things hapopen. When I get fed up and slide, ED and incontinence gets worse.

It is a bugger but your emotional and phsyical state are tied up.

Regarding orgasms, mine were more intense whilst I was healing, presumably due to nerve sensitivity. Now that I am healed, it is ... odd. I miss the old days but one has to make do. A rusty nut is better than no nut :) :) :)

Pete

User
Posted 20 Apr 2018 at 10:24

Pete,

Thank you for your tips.

I am doing the kegel exercises now regularly. One question though do they also affect ED? I tought it was just the continence.

I agree :-) better to have something than not having anythig at all.

Paulo

User
Posted 20 Apr 2018 at 11:24

Pete/Paulo

I have read that kegals are good for eractile function even in men without PCa issues.

Also I am 15 months post op and was given very little advice on penile rehabilitation by my uro. From this site I have gathered that the more you work at it the better. I have recently upped the anti with the pump and just trying as often as possible. Over the last month or so the rate of improvement has definately increased. That may be just through time and would have happened anyway but I dont tbink so.

Good Luck

Cheers

Bill

User
Posted 20 Apr 2018 at 16:13

Thank you Bill,

I will take very good note of that :-) I appreciate a lot the information we are sharing in these forums.

I read your profile. Also crossing fingers everything moves very well for you.

Paulo

User
Posted 21 Apr 2018 at 08:04
Hiya Paulo,

Try and make Kegels part of your daily life.I ended up doing them almost unconsciously when driving,watching television etc! I also mentioned to the urologist that my enthusiasm had made the area ache occasionally, he said that if we exercise our biceps we expect some ache,so he recommended I continue.Like Pete said if we let things slide we often suffer psychologically which affects our outlook and positivity. Keep at it Paulo.All the best.

Paul

User
Posted 21 Apr 2018 at 12:37

Hi Paul,

I am doing the Kegel exercises and enhancing them as time goes by. I try to keep the spirits high but just a while ago I was walking along the mall and noticed I was leaking. This diminishs me when happening and I run away back home. It is just a week I had my catheter removed, so maybe too early.

Thank you so much for the encouragement. Believe me I will fight this :-)

All the best to you too.

Paulo

 

User
Posted 22 Apr 2018 at 08:06
Morning Paulo,

Yes, a week after catheter removal is too early to judge too much yet.At least you were confident enough to be out and about.

Cheers,Paul.

User
Posted 22 Apr 2018 at 08:50
Hi Paulo

It sounds as though you are doing very well considering that it is very soon after your operation and catheter removal. I found that that the continence recovery moved in stages and the last bit was leaking while walking. If it is any help to you I can tell you that your progress is so much quicker than mine was but it got there in the end.

All the best

Kevan

User
Posted 22 Apr 2018 at 20:47

Hi Kevan,

I am told it is too early and I should be patient, I know, but we want this nuisance to be over quickly. I will try.

I have been out almost all days, I have gone out to have dinner out and shopping. Yesterday was a good day, today it wasn't :-) Maybe tomorrow is good again.

Thank you for your words and wish you all the best too.

Paulo

 

User
Posted 22 Apr 2018 at 21:12

Do you think you might be overdoing it - doing too much too soon can affect continence recovery and increases the risk of hetnia

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

User
Posted 23 Apr 2018 at 10:00

Hi Lyn,

You think so! I don't know if I am overdoing it. Maybe I am. I cannot tell, because as I am feeling better and I am doing things as I am improving.

I was supposed to do a business trip today and din't go and stay at home. I will try to think about not going out so often this week.

Thank you,

Paulo

User
Posted 23 Apr 2018 at 19:47

Did anyone else find that their surgeon underplayed the whoile penile shortening thing?

Mine did and some people I talked to on a US PCA site said the same thing.

1" typical reduction at rest with a small reduction in party mode, made better with Sidenafil and pump.

I found it annoying I had to research it myself.

P

User
Posted 23 Apr 2018 at 21:29

Hi Pete,
The survey is no longer in that link!
Thanks, Paulo

User
Posted 23 Apr 2018 at 21:32

Originally Posted by: Online Community Member

Hi Pete,
The survey is no longer in that link!
Thanks, Paulo

Paulo

Well spotted - I had a stray full stop :)

Background here if you are interested https://community.prostatecanceruk.org/posts/t15956-Invitiation-to-take-part-in-cancer-counselling-thesis-research#post182657

Pete

User
Posted 24 Apr 2018 at 00:27

I don’t think going out is a problem but getting overtired is - shopping may have included lifting, bending or pushing ... all of which you shouldn’t be doing. Enjoying a nice lunch somewhere never harmed anyone. I assume you are not driving as you are unlikely to be insured this soon - but driving also puts pressure on the wound area.

Do the good days follow an easy day, and the bad days follow a day when you went shopping?

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

User
Posted 24 Apr 2018 at 08:36

Well, I am driving for a few days already. Not long distances and doctor said I could...

Yes usually bad days are after times I went out and yes particularly when shopping. Actually the last bad day was Sunday and when I was shopping. Yesterday I stayed very calmly at home, only going out once for a very short walk, and I was great the whole day.

Thanks Lyn, maybe I need to understand these signs and go slowly on the moves I do.

 

User
Posted 24 Apr 2018 at 18:44
Paulo

After my surgery I complied with the DLVA guidelines and was driving after 4 weeks. It was pointed out to me that when I took out my insurance policy I agreed to their conditions and they may have different views to the DLVA and the NHS. Might be worth a ring just to make sure.

Sounds like your recovery is going well, keep mobile but no marathons.

Thanks Chris

User
Posted 24 Apr 2018 at 19:55

Prostate Pete- re the penis shortening

I had a real grump on here when I first joined as the surgeon that diagnosed A’s Gleason 6 (3+3) immediately recommended surgery without even mentioning the risk of shortening or penal atrophy!

I only learned the risk by joining this forum.. we were not impressed at the lack of full disclosure / underplaying of potential side effects by our diagnosing surgeon especially with a low risk diagnosis.

User
Posted 24 Apr 2018 at 22:15

It's another 'lucky dip' isn't it - our uro explained it all in detail the first time we saw him, although he knew that we were already aware because of my dad and father-in-law (who were both already under the same uro). However, explaining the theoretical risk of ED, incontinence, recurrence, penile atrophy and anything else was not the same as J understanding or believing it ... he simply believed that being young, none of it would actually apply to him.

I think that is probably true for many doctors; they will mention the risks (or hand over a leaflet - as it happened, Mr P handed us a PCUK toolkit to take home and read) but that doesn't necessarily mean that the patient a) takes it all in or b) takes it seriously. John used to tell me that knowing ED was a risk was not the same as having ED - it sounds like you might not always be able to get an erection but there is no way of imagining what it is like not to wake up with a lazy lob, to never wake up in the night with a hard on, that you might get erect but it will be too small for normal positions, to have a willy so short you can't wee in a urinal. How can anyone imagine that until they experience it?

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

User
Posted 24 Apr 2018 at 23:18

Yes a lucky dip indeed.. despite my father in law dying of PCa he was diagnosed at 72 with advanced PCa so we had no experience of surgery just hormone therapy, radio therapy and chemo.

I do agree also the individuals receiving the message hear it differently. We sat in the car and A said ‘ so that’s it then I will need to have it taken out.. he had heard mainly the surgeons recommendation to ‘put his prostate in a bucket’. I looked at him as if we had been in a different meeting!

We were told about incontinence but he did say for most it would be just like the stress incontinence some woman experience when sneezing or coughing, he did explain the dry orgasm consequence and that the ED would need tablets but no mention at all of penile shortening or a risk of atrophy.

I definitely reacted with a ‘there will have to be no other option before I think that is a good idea!’ One of the other dads from my daughters class at school had the same G6 diagnosis from the same consultant last year and I bumped into his wife last week and she said he just wanted it taken out ASAP so booked straight in for the op.. we are all different.We chatted about the kids ( grown up now) and neither of us mentioned ED though she did tell me without prompting he had no trouble with incontinence .... I didn’t feel it appropriate to ask and certainly the chance of disclosure of atrophy or shortening must be very low so the taboo lives on .. I agree imagiining life must be difficult but talking about it when it has happened equally so.

User
Posted 25 Apr 2018 at 01:08

We are all different. I ask people that have had treatment, I tell people, John tells people - particularly those who say daft things like "it's the best one to get" or "my friend's brother's father has it and he is fine" ... my most usual response of "ooh, that's lovely to hear - does he use injections or just a vacuum pump to have sex?" usually stops them in their tracks. It has also ensured that friends are more motivated to keep an eye on their husbands / partners / fathers/ mates!

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

User
Posted 25 Apr 2018 at 09:01

I think that is amazing Lynn and so important.

As we have no first hand experience of the full side effects i would only be talking anecdotally so not powerful and indeed coming across badly as we opted away from surgery ( for now at least). I like to hope if we had/ do experience the full side effects of surgery we would both be like you brave enough to break the taboo.

The lasting side effect we have personal experience of is the dry orgasm and this we knew 100% of men who have surgery experience and 30% of men who have an FLA have a dry orgasm ( and the bigger the area ablated the bigger the risk).

Even that I didn't mention to someone I had known 22 years...

Surgeons should be mentioning the risk of penis shortening and atrophy ... A standard disclosure of all risks is an easy fix surely.

User
Posted 25 Apr 2018 at 12:07

Thnaks Peter, answered your survey and read your story. Wish you good.

Paulo

User
Posted 25 Apr 2018 at 14:29
Originally Posted by: Online Community Member

I think that is amazing Lynn and so important.

As we have no first hand experience of the full side effects i would only be talking anecdotally so not powerful and indeed coming across badly as we opted away from surgery ( for now at least). I like to hope if we had/ do experience the full side effects of surgery we would both be like you brave enough to break the taboo.

Not amazing; I have made a whole career of talking about things that other people can’t find the words for. To me, it is about mental health - the DJ in our local pub was diagnosed so I told him how we had been affected. He cried; he was struggling with the side effects of surgery but had no idea that a) it was common or b) there were people he could be referred to for help. Nor did he have any idea that the cancer could come back - his surgeon had basically said “I am great and you will be cured” so it was a shock to him that John had had a recurrence. Naive yes, but much more prepared if that ever happens to him.

The psychological effects of PCa are under-researched and under-resourced ... one of the reasons Pete’s research questionnaire is a good thing to complete.

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

 
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