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Robotic RP for 51yo?

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User
Posted 23 Jun 2023 at 15:09

Hi everyone, I'm currently waiting for my biopsy but my MRI scan shows PI-RAD 4, T2, NO, with PSA of 5. I'm only 51yo and my immediate instinct is to get the cancer out as fast as possible. I'm leaning heavily on going private for Robotic RP. Can anyone, in their 50s, with similar situation share your thoughts and experience. Is this the best treatment option and how was the ED and incontinence? Thank you so much.

User
Posted 23 Jun 2023 at 21:39
I went for RARP although I am 62 and so glad that I did - the MRI and biopsy showed PI-RAD 4, Gleeson 3+4=7 but after they popped it out the histology upgraded it to Gleeson 4+5=9, PI-RAD 5 with unclear margins. PSA was 9.6 and is now <0.01 after RARP but I am on 6 monthly PSA tests to see when/if further treatment is necessary.
User
Posted 24 Jun 2023 at 10:35

I was diagnosed at 57 in February with a PSA of 4.5 Gleeson 3+4 T2a NO MO. Lucky it was caught early. I went for surgery after considering the options and had it just after Easter. What swung the decision was the oncologist saying they would go for surgery in my position to keep open options in the future. I was told I was young and fit and could deal with the surgery. I didn’t believe them until I saw the waiting room and I was the youth policy! I am now 9 week post surgery and had by follow up this week. It was as good as could be expected. PSA 0.001. Clear margins no evidence of spread and original diagnosis confirmed. I had my surgery with the NHS at the new royal Liverpool hospital and cannot fault them. There is no ignoring the side effects and I have struggled with them but things are improving. Time and patience is what is required. A former colleague was diagnosed several years ago in his mid 40s and after surgery he is now running ultra marathons- not a side effect I want! I feel I have dodged a bullet and been lucky. Only you can make the decision based on medical advice and your own circumstances- everyone is different with different experiences post treatment. The good thing is it seems to have been identified early and whatever course of action you decide on it is likely to be treatable although you can never be sure. Good luck.

User
Posted 23 Jun 2023 at 21:09

Everyone with a cancer diagnosis instinctively wants it cut out immediately. If you stubbed your tow would you want your foot amputated? You currently have nowhere near enough information to make an informed decision.

I was 53 at diagnosis, it turned out the best treatment for me was Brachytherapy. I had a PSA of 25 at diagnosis now it is 0.1. 

Dave

User
Posted 23 Jun 2023 at 22:16

Once you have all the information on the table the clinical team will give you all the options. They may nudge you towards one option over another if they think that a particular treatment is the best for your case. If you want information about my RARP journey thus far chech my profile.

User
Posted 23 Jun 2023 at 22:24

Not everyone who gets a poor MRI goes on to be diagnosed with prostate cancer- the PIRADS is just a prediction. If you do go on to be diagnosed, don't assume that private is best. My husband had the operation privately and then discovered that the after-care (incontinence, erectile dysfunction treatment, an allocated nurse) were not available to him because he had not had his op on the NHS. We had to fight to get anything. Not all NHS Trusts do that but you would want to check for your area.

My husband was 50 at diagnosis.

Edited by member 23 Jun 2023 at 22:25  | Reason: Not specified

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

User
Posted 24 Jun 2023 at 03:16

Originally Posted by: Online Community Member

Thanks Lyn. I’m hoping for my biopsy will turn out better than what PI-RAD is saying.

I’m sorry to hear your husband had to fight for post surgery treatment in NHS. I asked MacMillan nurses and they assured me I can always go back to NHS as long as I do not mix the treatments. The NHS guidance online said the same. 

May I know how your husband is doing now, and was the recovery manageable? Any ED and imcontinence?

Thank you 

The issue isn't so much going back to the NHS for further PCa treatment - it is accessing after-care support services that is sometimes a problem. My husband's cancer came back two years post-op so he needed salvage radiotherapy & hormone treatment. That was nearly 12 years ago and seems to have been successful. 

If you do get diagnosed, I will point you to my thread on life after RP but for the time being, probably not helpful or useful to you. There is no point getting ahead of yourself.  

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

User
Posted 24 Jun 2023 at 09:36

Originally Posted by: Online Community Member

Thanks Steve, glad to hear your PSA is <0.01. How long has it been since you had RARP? Was it private or NHS? Any side effects and was recovery manageable? Thanks 

6 weeks and I live in France so done through the equivalent of the NHS.
The actual operation was way better than I anticipated - very straightforward and basically in and out with the only pain being from the CO2 gas they inflate your abdomen with which creates shoulder pain, but good painkillers fixed that for the 2-3 days you experience it.
Recovery is at home and again very straightforward - walk a little frequently, drink lots of water, be careful of catching the catheter pipework and take painkillers as needed. Once the catheter is removed (7 days in my case) everything becomes a lot easier.
Wear Tena incontinence pads - I started with a 3 until I got the hang of which muscles stopped the leak and am now on a 1 with just the occasional dribble if I cough/sneeze or get lazy and forget. I practice stopping and starting the flow when standing at the loo which helps.
In my case they could not save the erection nerves so I will suffer from ED but I can live with that as we still have a lot of fun in the bedroom leaving us both satisfied - after 32 years we are both comfortable with each other but this is an effect that might be much more serious psychologically for others.

I certainly have no doubts that RARP was right for me, especially after the histology report and the thought of leaving that cancer breeding ground inside of me fills me with horror. But everyone needs to consider what is the right way forward for them.

User
Posted 29 Jun 2023 at 21:48

Just 53. Diagnosed back in April and had RARP on 6th June. So three weeks post Op. incontinence is fine, just an occasional dribble if sneeze etc, and too early to tell on ED. I had one nerve spared so at my age apparently 50% chance of returning to reasonable function whatever that means.

my cancer was aggressive, Gleason 8 upgraded to 9 on histology so getting it out was v important to me especially with young kids. Best chance for me to live longer, as follow up treatment easier if RARP first than the other way around apparently. Lots of factors to consider and getting a great surgeon helps!

 

User
Posted 30 Jun 2023 at 16:12
When I had to have my kidney removed (kidney cancer detected by my prostate MRI!), I did go private, simply because I happened to have private medical insurance through my employer, but I had my robotic surgery in an NHS hospital which hired out its operating theatres for private use at the weekend, and I was on an NHS urology ward getting exactly the same treatment as any NHS patient. Why? Because no private hospital in the NW of England has a Da Vinci robot.

User
Posted 05 Jul 2023 at 21:18

Chris,

I had RALP on my 51st birthday last September. It was an easy decision for me because as others have said, you can have further treatment after surgery far more easily than the other way round. And in my case I made the right decision because yesterday I was told my PSA levels were rising sufficiently for me to need HT and RT. I was sort of expecting it because the surgeon found a nodule of cancer he hadn’t seen on the pre-op scans and was unable to get the surrounding tissue out. It took 9 months for the PSA level to rise enough to make the call though.

I found incontinence after the TWOC difficult to deal with but it improved a lot for me. I still wear a light pad in case of minor dribbles. 

ED is more of a problem for me, mentally as well as physically. I was ok with it for a few months but it’s been getting me down of late. The CNS today is sorting me out with the company that supplies pumps, so will see how that goes.

Having said all this, RALP was the right decision and I’d make it again with the same info I had at the time.

Good luck and keep talking to the experts. 

Nick

 

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User
Posted 23 Jun 2023 at 21:09

Everyone with a cancer diagnosis instinctively wants it cut out immediately. If you stubbed your tow would you want your foot amputated? You currently have nowhere near enough information to make an informed decision.

I was 53 at diagnosis, it turned out the best treatment for me was Brachytherapy. I had a PSA of 25 at diagnosis now it is 0.1. 

Dave

User
Posted 23 Jun 2023 at 21:39
I went for RARP although I am 62 and so glad that I did - the MRI and biopsy showed PI-RAD 4, Gleeson 3+4=7 but after they popped it out the histology upgraded it to Gleeson 4+5=9, PI-RAD 5 with unclear margins. PSA was 9.6 and is now <0.01 after RARP but I am on 6 monthly PSA tests to see when/if further treatment is necessary.
User
Posted 23 Jun 2023 at 22:16

Once you have all the information on the table the clinical team will give you all the options. They may nudge you towards one option over another if they think that a particular treatment is the best for your case. If you want information about my RARP journey thus far chech my profile.

User
Posted 23 Jun 2023 at 22:24

Not everyone who gets a poor MRI goes on to be diagnosed with prostate cancer- the PIRADS is just a prediction. If you do go on to be diagnosed, don't assume that private is best. My husband had the operation privately and then discovered that the after-care (incontinence, erectile dysfunction treatment, an allocated nurse) were not available to him because he had not had his op on the NHS. We had to fight to get anything. Not all NHS Trusts do that but you would want to check for your area.

My husband was 50 at diagnosis.

Edited by member 23 Jun 2023 at 22:25  | Reason: Not specified

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

User
Posted 23 Jun 2023 at 22:39

Thanks Lyn. I’m hoping for my biopsy will turn out better than what PI-RAD is saying.

I’m sorry to hear your husband had to fight for post surgery treatment in NHS. I asked MacMillan nurses and they assured me I can always go back to NHS as long as I do not mix the treatments. The NHS guidance online said the same. 

May I know how your husband is doing now, and was the recovery manageable? Any ED and imcontinence?

Thank you 

User
Posted 23 Jun 2023 at 22:44

Thanks Steve, glad to hear your PSA is <0.01. How long has it been since you had RARP? Was it private or NHS? Any side effects and was recovery manageable? Thanks 

User
Posted 24 Jun 2023 at 03:16

Originally Posted by: Online Community Member

Thanks Lyn. I’m hoping for my biopsy will turn out better than what PI-RAD is saying.

I’m sorry to hear your husband had to fight for post surgery treatment in NHS. I asked MacMillan nurses and they assured me I can always go back to NHS as long as I do not mix the treatments. The NHS guidance online said the same. 

May I know how your husband is doing now, and was the recovery manageable? Any ED and imcontinence?

Thank you 

The issue isn't so much going back to the NHS for further PCa treatment - it is accessing after-care support services that is sometimes a problem. My husband's cancer came back two years post-op so he needed salvage radiotherapy & hormone treatment. That was nearly 12 years ago and seems to have been successful. 

If you do get diagnosed, I will point you to my thread on life after RP but for the time being, probably not helpful or useful to you. There is no point getting ahead of yourself.  

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

User
Posted 24 Jun 2023 at 09:36

Originally Posted by: Online Community Member

Thanks Steve, glad to hear your PSA is <0.01. How long has it been since you had RARP? Was it private or NHS? Any side effects and was recovery manageable? Thanks 

6 weeks and I live in France so done through the equivalent of the NHS.
The actual operation was way better than I anticipated - very straightforward and basically in and out with the only pain being from the CO2 gas they inflate your abdomen with which creates shoulder pain, but good painkillers fixed that for the 2-3 days you experience it.
Recovery is at home and again very straightforward - walk a little frequently, drink lots of water, be careful of catching the catheter pipework and take painkillers as needed. Once the catheter is removed (7 days in my case) everything becomes a lot easier.
Wear Tena incontinence pads - I started with a 3 until I got the hang of which muscles stopped the leak and am now on a 1 with just the occasional dribble if I cough/sneeze or get lazy and forget. I practice stopping and starting the flow when standing at the loo which helps.
In my case they could not save the erection nerves so I will suffer from ED but I can live with that as we still have a lot of fun in the bedroom leaving us both satisfied - after 32 years we are both comfortable with each other but this is an effect that might be much more serious psychologically for others.

I certainly have no doubts that RARP was right for me, especially after the histology report and the thought of leaving that cancer breeding ground inside of me fills me with horror. But everyone needs to consider what is the right way forward for them.

User
Posted 24 Jun 2023 at 10:35

I was diagnosed at 57 in February with a PSA of 4.5 Gleeson 3+4 T2a NO MO. Lucky it was caught early. I went for surgery after considering the options and had it just after Easter. What swung the decision was the oncologist saying they would go for surgery in my position to keep open options in the future. I was told I was young and fit and could deal with the surgery. I didn’t believe them until I saw the waiting room and I was the youth policy! I am now 9 week post surgery and had by follow up this week. It was as good as could be expected. PSA 0.001. Clear margins no evidence of spread and original diagnosis confirmed. I had my surgery with the NHS at the new royal Liverpool hospital and cannot fault them. There is no ignoring the side effects and I have struggled with them but things are improving. Time and patience is what is required. A former colleague was diagnosed several years ago in his mid 40s and after surgery he is now running ultra marathons- not a side effect I want! I feel I have dodged a bullet and been lucky. Only you can make the decision based on medical advice and your own circumstances- everyone is different with different experiences post treatment. The good thing is it seems to have been identified early and whatever course of action you decide on it is likely to be treatable although you can never be sure. Good luck.

User
Posted 29 Jun 2023 at 21:48

Just 53. Diagnosed back in April and had RARP on 6th June. So three weeks post Op. incontinence is fine, just an occasional dribble if sneeze etc, and too early to tell on ED. I had one nerve spared so at my age apparently 50% chance of returning to reasonable function whatever that means.

my cancer was aggressive, Gleason 8 upgraded to 9 on histology so getting it out was v important to me especially with young kids. Best chance for me to live longer, as follow up treatment easier if RARP first than the other way around apparently. Lots of factors to consider and getting a great surgeon helps!

 

User
Posted 30 Jun 2023 at 12:48

Lyn

You are so right, Lyn

Private treatment only guarantees you one thing - a choice of urologist and/or oncologist. I had my RP at one of the top London hospitals by an outstanding urologist with a lot of experience in robotic surgery. When you enter the hospital it exudes efficiency, competence and gives you an impression that all will be great here and they will give you the best and really look after you. Pot plants galore and pretty receptionists with their long eyelashes, short skirts and high heels felt like you were entering a movie set. But the reality was exactly the opposite. Nurses were brusk and some of them could hardly speak English. For aftercare I was transferred to a local private Spire hospital which was worse. On Sunday, the day after surgery, I had problems with the catheter, telephone calls were not answered, and when I arrived at the hospital there was no receptionist. My wife had to walk around the wards to find a nurse and we waited for over an hour when a doctor appeared. I can go on because the catheter had to remain in place for 5 weeks but you get the picture. The overall cost (paid reluctantly by my insurance company because they regarded robotic surgery as non-standard!) was £17,000 in 2011!

 '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 30 Jun 2023 at 16:12
When I had to have my kidney removed (kidney cancer detected by my prostate MRI!), I did go private, simply because I happened to have private medical insurance through my employer, but I had my robotic surgery in an NHS hospital which hired out its operating theatres for private use at the weekend, and I was on an NHS urology ward getting exactly the same treatment as any NHS patient. Why? Because no private hospital in the NW of England has a Da Vinci robot.

User
Posted 05 Jul 2023 at 21:18

Chris,

I had RALP on my 51st birthday last September. It was an easy decision for me because as others have said, you can have further treatment after surgery far more easily than the other way round. And in my case I made the right decision because yesterday I was told my PSA levels were rising sufficiently for me to need HT and RT. I was sort of expecting it because the surgeon found a nodule of cancer he hadn’t seen on the pre-op scans and was unable to get the surrounding tissue out. It took 9 months for the PSA level to rise enough to make the call though.

I found incontinence after the TWOC difficult to deal with but it improved a lot for me. I still wear a light pad in case of minor dribbles. 

ED is more of a problem for me, mentally as well as physically. I was ok with it for a few months but it’s been getting me down of late. The CNS today is sorting me out with the company that supplies pumps, so will see how that goes.

Having said all this, RALP was the right decision and I’d make it again with the same info I had at the time.

Good luck and keep talking to the experts. 

Nick

 

 
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