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User
Posted 24 Mar 2021 at 11:47

Hi,

I was diagnosed with PC a couple of years ago. I had a HIFU procedure to treat the worst of the cancer.

Following a recent MRI scan and biopsy, I have just been told by the doctor that the disease has worsened and that I should either have radiotherapy or have my prostate removed completely.

Personally, I do not want to go for radiotherapy and the doctor feels that I am too young to have it. So, it looks like I will be having it removed. I still have to meet with the surgeon which won't be for a few weeks yet.

My question is, "Has anyone out there had there prostate removed and how long is the recovery period, and what are the side affects?". Also, "What is life like in the long term after having your prostate removed"?

Replies will be greatly welcome.

Thanks,

Will

 

User
Posted 24 Mar 2021 at 16:13
A prostatectomy is major surgery which cuts all sorts of internal abdominal muscles. It does take time to recover. I had similar abdominal surgery myself in 2018, and it took around 6 weeks before I was able to drive, and a good 3 months before I was back to anywhere near normal health in terms of the ability to walk long distances. The best advice I can give is to listen to what your body tells you. When it starts hurting, stop!

Best wishes,

Chris

User
Posted 24 Mar 2021 at 17:07

If you click on my profile you can see my contemporaneous notes of my surgery and its aftermath.

I think reading other guy’s accounts, I was exceedingly lucky with my recovery, although I did have the benefit of a world-renowned surgeon and his pet robot doing the job in the first place.

Here, I am, nearly three years post-op, cancer-free, but with total erectile dysfunction and missing 2” off my penis! I don’t know whether it was the surgeon or the robot what nicked it, and I ask them on my Christmas card every year which one it was.

Neither has yet to cough.

My surgeon, Professor Whocannotbenamedhere says he would not send a friend or family member to any surgeon who does less than 100 prostatectomies a year. Keep that in mind when you choose yours.

Best of luck.

cheers, John.

Edited by member 24 Mar 2021 at 17:14  | Reason: Not specified

User
Posted 24 Mar 2021 at 18:01
You will need to clarify with the surgeon whether s/he believes that nerve-sparing surgery will still be possible with a prostate that has been damaged by HIFU. If nerve-sparing, you may be lucky and not have long term incontinence or ED. If the nerve bundles will be difficult to retain (or the surgeon has already determined that it will be non-nerve sparing RP) then ED will be almost certain and incontinence will be much more likely than for most of the members who will reply telling you about their experiences.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Mar 2021 at 18:25

Hi Will,

I have not had HIFU. I had mine removed robotically in November 2019 (nervesparing). I'd say recovery is in three parts:

Physical: I took things easy. They had me walking the next day and I was home two days post op. At 10 days catheter and staples removed. Returned to work at eight weeks, jogging at the gym a couple of weeks later. 

Continence: I was lucky here, more or less dry straight away after catheter removed. PFE exercises definitely pay off.

ED: This has taken months and still ongoing. I have to say is probably the most difficult part of my recovery as I found it mentally challenging in the early weeks. 

Hope this helps. 

Kev.

User
Posted 24 Mar 2021 at 22:08

Hi Will.

Very similar to Kev.  To answer in 3 parts.  I'm 6 years post op.

1. Physically. Quite fatigued, for a few days, ie very slow walking however didn't stay in bed any longer than normal. Overnight stay in hosp. Catheter out after 7 days. No meds other than blood thinner. No staples, wounds all healed fine and hardly notice them.

2. Dry immed. Very fortunate, did PFE and still do. However no guarantee as despite best efforts some men don't achieve full control.

3. ED . 3 years, mainly pump. Meds did nothing. I was non nerve sparing. Last 3 yrs fine and still improving.    Obviously no ejaculation and occasionally urine leakage.  So plenty for the mind and body to adjust to. 

Concur with Kev, the greatest challenge mentally. I'm fortunate as partner very understanding and extremely supportive.  

Re. You asked about diet..same as always, no change.  Perhaps more red wine ... 

 

Regards Gordon

 

 

Edited by member 24 Mar 2021 at 22:24  | Reason: Not specified

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User
Posted 24 Mar 2021 at 14:22

Hi Will,

I haven't had a HIFU procedure so don't know what impact if any that has on a subsequent prostate removal.

I did have my prostate removed almost exactly a year ago though by open surgery. It was a nerve sparing operation.

As for the recovery period. I could walk day 3 and by 6 weeks was feeling OK and was starting to regain my fitness from about week 10.

What's life like now? Hardly any different to pre op apart from feeling I have been through the treatment and come out the other side relatively unscathed. Dry orgasms take a bit of getting used to but still ok. No incontinence, no ED, PSA currently undetectable.

Best of luck

User
Posted 24 Mar 2021 at 15:41

Hi Mike,

Thanks for getting back to me so soon.

When I had HIFU, only part of the cancer was removed  I had a catheter for a couple of weeks and I think it took about 6 weeks before I could start exercising again.

I am assuming that the recovery time will be longer and I was also concerned about incontinence as well.

Do you now have a particular diet you follow and do much exercise. I see from your photo that you are a keen cyclist. I have a road bike as well and like to do some cyling as well as running.

Did it take long for you to exercise again?

Kind regards,

Will

User
Posted 24 Mar 2021 at 16:05

Hi Will,

Incontinence was never really an issue. I leaked a bit over the first few weeks-but only as the day progressed and I got tired. But with the pads it wasn't a big issue. By week 10 I think I was completely dry. 

I don't follow a particular diet and probably drink a bit too much red wine but exercise most days- Since Saturday I have done a couple of 9 mile hikes and  a couple of 40km rides . Its a big operation so my advice would be to build up gradually. I started walking everyday as soon as I was home (even with the catheter in) and built up the walks over the first 6 weeks or so. I think this was very beneficial. I stayed away from any lifting. About week 8 I started jogging and then at week 10 cycling (on a turbo) By about 4 months in I was training properly again. Hope that helps

User
Posted 24 Mar 2021 at 16:13
A prostatectomy is major surgery which cuts all sorts of internal abdominal muscles. It does take time to recover. I had similar abdominal surgery myself in 2018, and it took around 6 weeks before I was able to drive, and a good 3 months before I was back to anywhere near normal health in terms of the ability to walk long distances. The best advice I can give is to listen to what your body tells you. When it starts hurting, stop!

Best wishes,

Chris

User
Posted 24 Mar 2021 at 17:07

If you click on my profile you can see my contemporaneous notes of my surgery and its aftermath.

I think reading other guy’s accounts, I was exceedingly lucky with my recovery, although I did have the benefit of a world-renowned surgeon and his pet robot doing the job in the first place.

Here, I am, nearly three years post-op, cancer-free, but with total erectile dysfunction and missing 2” off my penis! I don’t know whether it was the surgeon or the robot what nicked it, and I ask them on my Christmas card every year which one it was.

Neither has yet to cough.

My surgeon, Professor Whocannotbenamedhere says he would not send a friend or family member to any surgeon who does less than 100 prostatectomies a year. Keep that in mind when you choose yours.

Best of luck.

cheers, John.

Edited by member 24 Mar 2021 at 17:14  | Reason: Not specified

User
Posted 24 Mar 2021 at 18:01
You will need to clarify with the surgeon whether s/he believes that nerve-sparing surgery will still be possible with a prostate that has been damaged by HIFU. If nerve-sparing, you may be lucky and not have long term incontinence or ED. If the nerve bundles will be difficult to retain (or the surgeon has already determined that it will be non-nerve sparing RP) then ED will be almost certain and incontinence will be much more likely than for most of the members who will reply telling you about their experiences.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Mar 2021 at 18:25

Hi Will,

I have not had HIFU. I had mine removed robotically in November 2019 (nervesparing). I'd say recovery is in three parts:

Physical: I took things easy. They had me walking the next day and I was home two days post op. At 10 days catheter and staples removed. Returned to work at eight weeks, jogging at the gym a couple of weeks later. 

Continence: I was lucky here, more or less dry straight away after catheter removed. PFE exercises definitely pay off.

ED: This has taken months and still ongoing. I have to say is probably the most difficult part of my recovery as I found it mentally challenging in the early weeks. 

Hope this helps. 

Kev.

User
Posted 24 Mar 2021 at 22:08

Hi Will.

Very similar to Kev.  To answer in 3 parts.  I'm 6 years post op.

1. Physically. Quite fatigued, for a few days, ie very slow walking however didn't stay in bed any longer than normal. Overnight stay in hosp. Catheter out after 7 days. No meds other than blood thinner. No staples, wounds all healed fine and hardly notice them.

2. Dry immed. Very fortunate, did PFE and still do. However no guarantee as despite best efforts some men don't achieve full control.

3. ED . 3 years, mainly pump. Meds did nothing. I was non nerve sparing. Last 3 yrs fine and still improving.    Obviously no ejaculation and occasionally urine leakage.  So plenty for the mind and body to adjust to. 

Concur with Kev, the greatest challenge mentally. I'm fortunate as partner very understanding and extremely supportive.  

Re. You asked about diet..same as always, no change.  Perhaps more red wine ... 

 

Regards Gordon

 

 

Edited by member 24 Mar 2021 at 22:24  | Reason: Not specified

User
Posted 25 Mar 2021 at 19:25

Thanks Mike, that was great to know.

Regards,

Will

User
Posted 26 Mar 2021 at 19:46

Hi Lyn,

Thanks for your advice.

I will keep it mind when I meet with the consultant.

Kind regards,

Will

User
Posted 26 Mar 2021 at 19:51

Hi Kev.

Thanks for your input, will keep it in mind.

Kind regards,

Will

User
Posted 26 Mar 2021 at 19:53

Hi Rob,

Thanks for getting back to me.

Very interesting.

Kind regards,

Will

 
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