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User
Posted 25 Sep 2023 at 07:13

Hi all, I am 51 and just diagnosed with localised prostate cancer. Gleason score 3+4. I am due to have a RP in the next 6-8 weeks. I am generally worried about many things really and wanted some advice. My main concerns are recovery and incontinence. I am a PE teacher and I am very active. I lift weights at the gym, ride my bike and play rugby. Is this all going to end for me? I don’t relish the thought of weeing myself when I do some dead lifts!

Also. I am trying to keep as busy as possible both at work and at home and I am not sleeping very well. So I am subsequently getting very tired. Any advice would be great fully received.

Sheersy

User
Posted 27 Sep 2023 at 10:16

Hi Sheersy,

I’m just now three months post RP and without wishing to jinx it, I feel I’m fully continent.

As said by others, it really does depend, however with your level of fitness, age and diagnosis you’ve a very good chance of a very good recovery.

I’m 63, I had a G7 (3+4) and regarded myself as pretty fit and active through cycling, walking, gym etc.

I was fully prepared for worst case scenarios, however have so far have been very happy with the outcome. I had a nerve sparing operation with the same post op histology and clear margins. I was pretty much 98% continent after the catheter was removed, however kept the pads in for security for the first few weeks. I had very minor leakage, mainly when yawning or sneezing that has all largely gone now. I’m also not suffering any ED although I am taking Tadalafil as prescribed.

I followed all the guidance pre and post op re pelvic floor exercises, diet etc. and stayed off alcohol for 7 weeks, walked as much as I felt comfortable with initially and built up from there.

Week by week I continued to improve to the point now where it feels like I’ve not been through it all, although I do remain conscious of it, so am certainly not taking liberties.

I have this morning just returned from my first proper gym session (adhering to the 3 month embargo). Whilst taking it relatively easy, I moved some weights around and exercised to what I’d say was 60% of pre-op, with no leakages and no pads.

Having PCA and requiring surgery does have a big impact on your life, planned activities and can impact your mental wellbeing, however in a lot of cases which are caught early and treated well, It can be a relatively short period in the scheme of life.

All the best,

Mark

User
Posted 25 Sep 2023 at 08:35

I'm not a prostatectomy patient, so hopefully others will chip-in.

Obviously, this is something to discuss with your surgeon, and they may be able to give some idea on the impact to continence depending how close the cancer is to the Apex of the prostate (which is at the bottom, near the urinary sphincter you will be retaining). However, there are no guarantees.

You might want to check out a way of doing the operation called Retzius Sparing, which is practiced by a small number of top surgeons. This might require a referral elsewhere, because they tend to concentrate in specialist centres. Retzius Sparing results in better continence earlier on, although by a year later, standard robotic prostatectomy patients have caught up to the same level. You might discuss this on the basis that excellent continence is essential for your job and you want a second opinion, although I wouldn't expect a surgeon who doesn't do Retzius Sparing to be particularly complimentary about it.

User
Posted 25 Sep 2023 at 08:50

Sheersy,

I’m roughly the same diagnosis as you though a little older at 71.

I have decided that the side effects of RP and of RT for me do not merit the treatment for localised Gleason 3+4 and so I am actively investigating Focal Therapy and in particular HIFU.  I understand that as it is focussed treatment, a minor area of mine (Gleason 3+3) could be ignored and so there is a risk that in a couple of years I may have to come back for further HIFU or even eventually RP.  However I have the chance that this will not be the case and I will have minimal side effects (I am still active walking 6 miles every morning before breakfast (just got back!))  My surgeon was very wary of recommending me for HIFU but I had anticipated his reluctance and I have had a referral for this treatment on the NHS.  

I can’t offer advice but I know what is important for me and all I can suggest is that you do as much research as possible before deciding a treatment.   I have changed my mind several times and will also be seeing a consultant tomorrow to consider brachytherapy as a second option if I am not suitable for HIFU.

Simon

Edited by member 25 Sep 2023 at 09:24  | Reason: Not specified

User
Posted 25 Sep 2023 at 10:35

I understand your concerns because I had prostatectomy 12 years ago at the age of 72. I am 99.9% continent and my ED situation at the time of surgery, because of my age, did not figure in my decision making because we were going to have to find a solution to maintain our sex life. We are pleased that we chose surgery because I am cancer free (so far!) with my PSA  < 0.003 as it was after surgery. I use a very small pad for security rather than a need. Our sex life is as good as, and in many ways, better than before the surgery. You are obviously very fit which is great for recovery.You haven't said whether the cancer is well contained with a good negative margin or not; that is important. If you have found an experienced urologist to operate you have a very good chance of  full recovery. Of course you can't know for certain that you are making the right decision but your age and your fitness will give you a very good chance of a cure. Make sure you have a second opinion and talk to an oncologist. Luck plays a big part in this so good luck

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 25 Sep 2023 at 17:04

Hi Sheersy1.

Everyone experience’s different problems regarding incontinence, basically the fitter you are & the stronger your pelvic muscles before surgery the better your chances of a quick return to normal continence.

Although I am a little older than you (69) I still run 3 mile a day to the gym & then do my workout, this is the schedule I have done for the past 40 years 6 days a week uncluding incline bench sit ups.

I believe rightly or wrongly that that is the reason I suffered only minor incontinence problems, I was more or less dry from the moment the catheter was removed until now 10 months post surgery, the only slight problem I had was in maybe the first 2 weeks when I leaked a drop from going from sitting to standing, but a light continence pad was all that I needed once a day,nothing on a night.

you seem fairly fit so you probably have good pelvic strength already, but the stronger your pelvic area is the better you will recover  as you  (I think)  loss one of your bladder control muscles on the removal of the prostrate.

Keep up the pelvic exercises before your surgery & good luck.

Jeff.

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User
Posted 25 Sep 2023 at 08:35

I'm not a prostatectomy patient, so hopefully others will chip-in.

Obviously, this is something to discuss with your surgeon, and they may be able to give some idea on the impact to continence depending how close the cancer is to the Apex of the prostate (which is at the bottom, near the urinary sphincter you will be retaining). However, there are no guarantees.

You might want to check out a way of doing the operation called Retzius Sparing, which is practiced by a small number of top surgeons. This might require a referral elsewhere, because they tend to concentrate in specialist centres. Retzius Sparing results in better continence earlier on, although by a year later, standard robotic prostatectomy patients have caught up to the same level. You might discuss this on the basis that excellent continence is essential for your job and you want a second opinion, although I wouldn't expect a surgeon who doesn't do Retzius Sparing to be particularly complimentary about it.

User
Posted 25 Sep 2023 at 08:50

Sheersy,

I’m roughly the same diagnosis as you though a little older at 71.

I have decided that the side effects of RP and of RT for me do not merit the treatment for localised Gleason 3+4 and so I am actively investigating Focal Therapy and in particular HIFU.  I understand that as it is focussed treatment, a minor area of mine (Gleason 3+3) could be ignored and so there is a risk that in a couple of years I may have to come back for further HIFU or even eventually RP.  However I have the chance that this will not be the case and I will have minimal side effects (I am still active walking 6 miles every morning before breakfast (just got back!))  My surgeon was very wary of recommending me for HIFU but I had anticipated his reluctance and I have had a referral for this treatment on the NHS.  

I can’t offer advice but I know what is important for me and all I can suggest is that you do as much research as possible before deciding a treatment.   I have changed my mind several times and will also be seeing a consultant tomorrow to consider brachytherapy as a second option if I am not suitable for HIFU.

Simon

Edited by member 25 Sep 2023 at 09:24  | Reason: Not specified

User
Posted 25 Sep 2023 at 10:35

I understand your concerns because I had prostatectomy 12 years ago at the age of 72. I am 99.9% continent and my ED situation at the time of surgery, because of my age, did not figure in my decision making because we were going to have to find a solution to maintain our sex life. We are pleased that we chose surgery because I am cancer free (so far!) with my PSA  < 0.003 as it was after surgery. I use a very small pad for security rather than a need. Our sex life is as good as, and in many ways, better than before the surgery. You are obviously very fit which is great for recovery.You haven't said whether the cancer is well contained with a good negative margin or not; that is important. If you have found an experienced urologist to operate you have a very good chance of  full recovery. Of course you can't know for certain that you are making the right decision but your age and your fitness will give you a very good chance of a cure. Make sure you have a second opinion and talk to an oncologist. Luck plays a big part in this so good luck

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 25 Sep 2023 at 12:19

I’m 57 and had a similar diagnosis to you in February this year with surgery in April so I’m now 5 months post op. I chose surgery and the decision was made for me  by the oncologist who advised they would have surgery in my position. I took the view that there would be short term pain for longer term benefit. On the incontinence it was difficult to start with but it is now manageable. I play cricket and decided not to play this season - arguably I could have played from August but decided against it as it was only a few weeks left till season end. I’m now just beginning to think about starting to get back to the gym and yoga. On the positive side I’m now up to walking 20,000 steps a day at times and over 10 miles. A former colleague of mine had surgery in his 40s several years ago and is now running ultra marathons (not a side effect I would want!). The key message is patience and time and remember that everyone is different. Best of luck. 

User
Posted 25 Sep 2023 at 12:39

Many thanks for that, having to slow down and not do things is going to be a real challenge for me. Hope your recovery continues to go well. Hopefully you can get a few runs and wickets next season. 

User
Posted 25 Sep 2023 at 12:56
Don't do any weightlifting for at LEAST three months after surgery, or you risk doing yourself serious damage. If you have robotic surgery, there's not much to see on the outside, but the surgery cuts abdominal muscles which take a long time to full rejoin.

Chris

User
Posted 25 Sep 2023 at 13:10

Hi Sheersy,
I didn’t have the option of surgery but nearly ALL men in my Maggies group who had the option,  chose surgery. They vary considerably in their recovery period but I DO think it depends a lot on how fit and active you are before the Op…and also how positive you are. It also seems important not to overdo things ….you might feel ok at the time but it hits you the following day. You just need to listen to your body, it’ll certainly let you know!

There are some (farmers for example) who just can’t afford to be out of action physically and might choose HT/RT..this route would allow you to continue being active during treatment although you might suffer from fatigue and joint ache.

Good luck with your choice.

Derek

User
Posted 25 Sep 2023 at 16:19
Age 62 and had the RARP in May of this year. You will be out of action for a few months from gym work/weightlifting as everything needs to heal. Currently I am almost continent - down to just a #1 Tena pad a day and sometimes that's completely dry - so that's after 4 months. I am able to do gardening, and general lifting with no issues as long as I remember to empty my bladder before I start - if not then I can get caught out with lifting something but it's only a dribble.

The Tena pads are really good at holding the urine - you won't be flooding out after a week or so, just a small dribble and so the #3 pads would work well if you are moving around a lot - I think they hold around 300ml of liquid. Even on my worst days in the early stages, I never had a pad leak into my underpants/trousers.

User
Posted 25 Sep 2023 at 17:04

Hi Sheersy1.

Everyone experience’s different problems regarding incontinence, basically the fitter you are & the stronger your pelvic muscles before surgery the better your chances of a quick return to normal continence.

Although I am a little older than you (69) I still run 3 mile a day to the gym & then do my workout, this is the schedule I have done for the past 40 years 6 days a week uncluding incline bench sit ups.

I believe rightly or wrongly that that is the reason I suffered only minor incontinence problems, I was more or less dry from the moment the catheter was removed until now 10 months post surgery, the only slight problem I had was in maybe the first 2 weeks when I leaked a drop from going from sitting to standing, but a light continence pad was all that I needed once a day,nothing on a night.

you seem fairly fit so you probably have good pelvic strength already, but the stronger your pelvic area is the better you will recover  as you  (I think)  loss one of your bladder control muscles on the removal of the prostrate.

Keep up the pelvic exercises before your surgery & good luck.

Jeff.

User
Posted 25 Sep 2023 at 19:44

Hi Sheersy1,

 As you are a PE teacher and use the gym and undertake other sports, your lower pelvic floor muscles are probably already in good shape.  I would just suggest that you keep them in top condition over the next 6-8 weeks until your surgery.  That should stand you in good stead re. incontinence post-surgery.  You may want to download an App to your phone which enables you to schedule Kegel exercises (minimum 3 times daily).  One such is called the 'Squeezy' App.

Best wishes,

JedSee.

User
Posted 25 Sep 2023 at 20:15

JedSee, 

Many thanks for that. Will look into the app

all the best

User
Posted 27 Sep 2023 at 07:46

I was diagnosed 10 years ago with gleeson 3+3 it was only when it went to 4+3 that they said I should come off active surveillance.  Depending on your score / situation you might consider active surv.?  For me the last 10 years ‘normal’ life were so worth it.  I am also a teacher and in my 60s now so was expecting to retire soon BUT I could not imagine teaching with all that is involved with pads etc that I now have to use.  For me it is seeing mates at festivals and weekends away that I can’t now go to.  Sex will now be another aspect to address.. but at least I had my 50s !!  I have. Not managed to find any information on the web about teaching with incontinence.  I am signed off for 8 weeks (5 to go) but in the current state it would be untenable to return. The pads are sore and uncomfortable and concentration in a classroom with what is going on below is unthinkable.   Bear all in mind but you should be ultimately guided by your results and professionals

User
Posted 27 Sep 2023 at 07:50

Sorry just re read and you are waiting for op.  So tharby good as so early you should  be cancer free after !

User
Posted 27 Sep 2023 at 10:09

I was 52 when diagnosed 3+4 T2a N0 Mx

1 year later I am long distance walking (20 plus miles over multiple days) go to the gym for weights and cardio. I have given up mountain biking, the bumps could damage those nerves. Road cycling is fine with the right seat.

What makes you think in your diagnosis that you have to give up exercise?

PS after your op take it easy. If I walked too far in the days following the op I knew about it. Within 8 weeks I was back up to 14 miles over rough terrain - but everyone is different.

The uro-oncology team told me to do my pelvic floor exercises 6 times a day before the op and after the op once the catheter had been removed.

 

Edited by member 27 Sep 2023 at 10:12  | Reason: Not specified

User
Posted 27 Sep 2023 at 10:16

Hi Sheersy,

I’m just now three months post RP and without wishing to jinx it, I feel I’m fully continent.

As said by others, it really does depend, however with your level of fitness, age and diagnosis you’ve a very good chance of a very good recovery.

I’m 63, I had a G7 (3+4) and regarded myself as pretty fit and active through cycling, walking, gym etc.

I was fully prepared for worst case scenarios, however have so far have been very happy with the outcome. I had a nerve sparing operation with the same post op histology and clear margins. I was pretty much 98% continent after the catheter was removed, however kept the pads in for security for the first few weeks. I had very minor leakage, mainly when yawning or sneezing that has all largely gone now. I’m also not suffering any ED although I am taking Tadalafil as prescribed.

I followed all the guidance pre and post op re pelvic floor exercises, diet etc. and stayed off alcohol for 7 weeks, walked as much as I felt comfortable with initially and built up from there.

Week by week I continued to improve to the point now where it feels like I’ve not been through it all, although I do remain conscious of it, so am certainly not taking liberties.

I have this morning just returned from my first proper gym session (adhering to the 3 month embargo). Whilst taking it relatively easy, I moved some weights around and exercised to what I’d say was 60% of pre-op, with no leakages and no pads.

Having PCA and requiring surgery does have a big impact on your life, planned activities and can impact your mental wellbeing, however in a lot of cases which are caught early and treated well, It can be a relatively short period in the scheme of life.

All the best,

Mark

 
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