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radical prostatectomy yes or no

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User
Posted 25 Apr 2018 at 18:28

Hi all, diagnosed with 4 + 3 last week, been advised to have radiacal prostatectomy or RT 5 x week for 7 weeks.  Looking for peoples experiences with both treatments.  Surgeon is arranging an appointment with radiology dept soon to gauge further info.  Any advice, stories negative or positive welcome.  TYIA

 

User
Posted 25 Apr 2018 at 21:01

Hi Smyler,   I had a similar diagnosis but was told it was near the edge so was very keen to get it done.  That drove me to be very focussed towards the operation.  The alternative being 3 months of hormones followed by Radiotherapy and more hormones.   Perhaps based on my previous experience of skin cancer I was convinced cutting it out was the best option.  I've not regretted it.

2 days in hospital, no pain in my case, and a week with a catheter.  Then a couple of months wearing a pad, the worst was over in a couple of weeks.  Still have ED but there are signs of some recovery.  After the op my Gleason was upgraded to 4+4 and I was told the operation was the best choice.  With RT you'll not know if 4+3 is actual or if the margin is positive, also psa will not as accurate a test in future.  So far so good but time will tell.

Age can be a factor as some want to have less risk to their sex life.

There are people who have other opinions and other ideas who should add more.  I'm a patient and not medical in any way.  There is more on my profile along with a link to a diary on a website I created.

Regards

 

 

Edited by member 26 Apr 2018 at 19:22  | Reason: Not specified

User
Posted 12 May 2018 at 21:49
Hi I was diagnosed on 2nd March 18

And are now sitting in my hospital room after a RALP. I went for this as I could not stand the thought of it still possibly growing inside me.

In my case I was 3+4 Gleason contained.

Thursday was the op and Friday the surgeon came and said so far on frozen sections on the table looked “negative margins “ so still have to wait for the full sections test but for me fingers crossed. Good luck with your future

User
Posted 13 May 2018 at 20:22
Hi there,

Only just seen this trail. I’m 60 and fairly fit and active. I was ,Gleason 3 + 4. Had the radical prostatectomy 10th April and have been recovering well. Scars healed nicely, catheter wasn’t a problem, more a nuisance! Also did pelvic before and after. Consultant due 23rd May and hoping good news. Cancer was supposedly contained so praying for right result. Also no continence problem either. Taking it easy regarding lifting, pulling etc and waiting on advice before going back to playing table tennis.

If OK then I know this was the right decision and worth a few weeks out of the normal world!

Happy to discuss further.

Good luck

Jes

User
Posted 18 May 2018 at 19:29
It is indeed dangerous to be unaware of the true possibilities of ED. Both our UK potential surgeon and US FLA consultant did say the same thing ‘ I won’t make you a better lover than your were before the procedure’! I haven’t read anyone claim any different whatever treatment they opt for so best to be aware.

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User
Posted 25 Apr 2018 at 21:01

Hi Smyler,   I had a similar diagnosis but was told it was near the edge so was very keen to get it done.  That drove me to be very focussed towards the operation.  The alternative being 3 months of hormones followed by Radiotherapy and more hormones.   Perhaps based on my previous experience of skin cancer I was convinced cutting it out was the best option.  I've not regretted it.

2 days in hospital, no pain in my case, and a week with a catheter.  Then a couple of months wearing a pad, the worst was over in a couple of weeks.  Still have ED but there are signs of some recovery.  After the op my Gleason was upgraded to 4+4 and I was told the operation was the best choice.  With RT you'll not know if 4+3 is actual or if the margin is positive, also psa will not as accurate a test in future.  So far so good but time will tell.

Age can be a factor as some want to have less risk to their sex life.

There are people who have other opinions and other ideas who should add more.  I'm a patient and not medical in any way.  There is more on my profile along with a link to a diary on a website I created.

Regards

 

 

Edited by member 26 Apr 2018 at 19:22  | Reason: Not specified

User
Posted 25 Apr 2018 at 23:41
You need to know the staging too ie T1 T2 T3 etc. If it's T3 you may be better with RT if it's T1 or 2 surgery. Read up on your options and make sure you are happy with your decision and tge potential consequences/benefits.
User
Posted 04 May 2018 at 22:43

Hi,

I was diagnosed at the end of Jan 2018 with Gleeson 3+3, the biopsy showed cancer in 7 of 10 samples. Being 54 years old the recommendation from two urology consultants was to have the operation. The most important criteria being to find a good surgeon. I had a Retzius-sparing robotic radical prostatectomy on 16/04/2018. I was discharged from hospital in just less than 24hrs from completion of the operation. Painkillers, paracetamol and ibuprofen for two days at home then didn't need any. I was continent as soon as the catheter was taken out after 7 days. I am also experiencing "morning glory" and am now taking a low dose of sildenafil and things are definitely going the right way. 02/05/2018 I was told all the cancer had been removed and there were no other adverse signs.

I was quite fit before the operation, I started pelvic floor exercises well in advance of the operation and have continued with the exercises post operation. Based on current healing rate I will be swimming before the end of May, rowing and cycling before the end of July and then sometime after that back to running.

I know that I am very lucky (and very grateful to the surgeon). I took the option of the operation because I was advised that RT can have longer term detrimental effects and you can have surgery and then RT at a later date if needed but the reverse is not really an option.  

Rgds,

 

User
Posted 05 May 2018 at 08:14
Things sound very good for you after the operation. Long may that continue.

Thanks for sharing such a positive story.

Ian.

Ido4

User
Posted 05 May 2018 at 15:07
Originally Posted by: Online Community Member
Hi,

I was diagnosed at the end of Jan 2018 with Gleeson 3+3, the biopsy showed cancer in 7 of 10 samples. Being 54 years old the recommendation from two urology consultants was to have the operation. The most important criteria being to find a good surgeon. I had a Retzius-sparing robotic radical prostatectomy on 16/04/2018. I was discharged from hospital in just less than 24hrs from completion of the operation. Painkillers, paracetamol and ibuprofen for two days at home then didn't need any. I was continent as soon as the catheter was taken out after 7 days. I am also experiencing "morning glory" and am now taking a low dose of sildenafil and things are definitely going the right way. 02/05/2018 I was told all the cancer had been removed and there were no other adverse signs.

I was quite fit before the operation, I started pelvic floor exercises well in advance of the operation and have continued with the exercises post operation. Based on current healing rate I will be swimming before the end of May, rowing and cycling before the end of July and then sometime after that back to running.

I know that I am very lucky (and very grateful to the surgeon). I took the option of the operation because I was advised that RT can have longer term detrimental effects and you can have surgery and then RT at a later date if needed but the reverse is not really an option.

Rgds,

Might I enquire where you had your Retzius-sparing procedure carried out, as it seems a rarity in Britain? Were you private or NHS?

I ask as I am due for the same op at the end of this month.

Best wishes for your continuing recovery.

Kind regards, John

User
Posted 06 May 2018 at 23:55
From what I have seen the Retzius sparing operation is not available on the national health service where I am from and you can only get it privately. So unfortunately it is yet another case in England if you can afford to pay you get the better treatment I don’t mean Any disrespect to the poster of the original message. If you can afford to get the best treatment available then more power to your elbow.

I also note that your Gleason score was 3:3 I thought that this low score meant you went onto watchful waiting? Being recommended surgery with such a low Gleason score in my AHT would not happen, unless I am missing something? BTW mine was 4:5 and as my cancer is so aggressive any sort of RP was not suitable for me as the operation would not have left enough cancer free material around the prostate. Wish you all the best for the future

Edited by member 07 May 2018 at 00:03  | Reason: Not specified

User
Posted 07 May 2018 at 00:15

This is Smyler's thread - ideally Foalma should start a new thread so that Smyler's questions don't get lost in a discussion about a treatment which is rather niche and unlikely to be available to him.

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

User
Posted 12 May 2018 at 21:49
Hi I was diagnosed on 2nd March 18

And are now sitting in my hospital room after a RALP. I went for this as I could not stand the thought of it still possibly growing inside me.

In my case I was 3+4 Gleason contained.

Thursday was the op and Friday the surgeon came and said so far on frozen sections on the table looked “negative margins “ so still have to wait for the full sections test but for me fingers crossed. Good luck with your future

User
Posted 13 May 2018 at 20:22
Hi there,

Only just seen this trail. I’m 60 and fairly fit and active. I was ,Gleason 3 + 4. Had the radical prostatectomy 10th April and have been recovering well. Scars healed nicely, catheter wasn’t a problem, more a nuisance! Also did pelvic before and after. Consultant due 23rd May and hoping good news. Cancer was supposedly contained so praying for right result. Also no continence problem either. Taking it easy regarding lifting, pulling etc and waiting on advice before going back to playing table tennis.

If OK then I know this was the right decision and worth a few weeks out of the normal world!

Happy to discuss further.

Good luck

Jes

User
Posted 18 May 2018 at 15:49

Hello smyler,

I had surgery back in March and do not regret it as I am now recovering really well. I was in hospital for two days and once home recovered fairly quickly, scars have healed nicely and I am no longer wearing pads as am now dry after about 6-8 weeks. ED can be a problem if you let it, erectile function can be returned to normal in a few months or a little longer, in the mean time there are little pills that can help with this. I am still off work as I need to recover full fitness before returning to work due to the nature of the work I do. However for most people they can return to work after about 6 weeks, less if your recovery is rapid and without complications. I don't know where your hospital is but if it's UCLH then I would recommend attending their surgery school for people considering surgery as it is a very informative presentation and can help you decide whether surgery is for you or not.

Whatever you decide I hope everything goes well for you.

Best of luck

Ants

 

User
Posted 18 May 2018 at 17:24

Just to be clear, Ants' reply is optimistic. Some men recover erectile function in a few weeks or months, others can take 2 to 3 years, some never recover. Tablets work for some but not all men. Vacuum pumps work for some but not all, and the same can be said of injections and creams. A small number of men never get an erection again no matter what they try.

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

User
Posted 18 May 2018 at 19:29
It is indeed dangerous to be unaware of the true possibilities of ED. Both our UK potential surgeon and US FLA consultant did say the same thing ‘ I won’t make you a better lover than your were before the procedure’! I haven’t read anyone claim any different whatever treatment they opt for so best to be aware.

User
Posted 18 May 2018 at 20:17

I like that post Clare lol !! I think I was amazing before the procedure and slightly more amazing after albeit with a smaller less able little Chris. Depends on the fellow and his partner but we still have great fun !! I’m taking every last opportunity before HT :-))

User
Posted 18 May 2018 at 21:31

Originally Posted by: Online Community Member

I think I was amazing before the procedure and slightly more amazing after 

 

I don't think that is what El says https://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif

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

User
Posted 18 May 2018 at 22:12

Ah Chris, there is always an exception and you have taken to the challenge like an elite runner looking for a personal best! X

User
Posted 06 Jun 2018 at 20:31

Hi,

 

It was done at Reading Royal Berks hospital, the consultant was **************, he was excellent.

Was given the OK to return to sport (swimming, cycling and running at gentle pace) at six weeks.

On a different note, before the operation they will probably do an ECG, which involves shaving part of your chest and then for the operation the will shave any stomach hair that you have. If I had known that I would have treated myself to a bit of male grooming and got a proper job done to take it all off.

 

 

 

Edited by moderator 06 Jun 2018 at 22:29  | Reason: Not specified

User
Posted 06 Jun 2018 at 21:17
Why did they shave your stomach when retzius-sparing surgery goes through the perineum?

Also, best to edit your post to remove the name of the surgeon.

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

User
Posted 06 Jun 2018 at 22:27

Wet shaving around the proposed surgical area could lead to the surgery being cancelled due to a supposedly increase of infection. My hairy areas were shaved by the staff with hair clippers.

Thanks Chris

 

User
Posted 07 Jun 2018 at 08:02

Originally Posted by: Online Community Member
Why did they shave your stomach when retzius-sparing surgery goes through the perineum?

Also, best to edit your post to remove the name of the surgeon.

It in case it all goes tits up and they have to open you up to sort stuff out.

User
Posted 07 Jun 2018 at 09:13

Originally Posted by: Online Community Member
Why did they shave your stomach when retzius-sparing surgery goes through the perineum?

My recent Retzius-sparing surgery was carried out through my abdomen, and I have the still-stitched keyholes to prove it. Moreover, I was treated to a half-Brazilian manscaping, where the supra-pubic catheter tube emerges immediately above my penis to be removed on day 9. No wearing a painful urethral catheter for weeks for me!

Edited by member 07 Jun 2018 at 18:13  | Reason: Not specified

User
Posted 07 Jun 2018 at 10:01

Originally Posted by: Online Community Member
You need to know the staging too ie T1 T2 T3 etc. If it's T3 you may be better with RT if it's T1 or 2 surgery. Read up on your options and make sure you are happy with your decision and tge potential consequences/benefits.

strange, I’m 4:5 T2c and was told surgery was not an option as mine was 80% plus cancer And classed as aggressive 

User
Posted 07 Jun 2018 at 11:56

Not an option in any circumstance or not the best / preffered  option?

I believe the older you get the more attractive RT is and certainly  if there is a high risk of local spread RT is preferred as it has effects that extend beyond the prostate. 

Either way the stats say they are equally effective for long term remission.

User
Posted 07 Jun 2018 at 15:32

Hi Smyler had my op on 17th April operation went well and even fixed a fault with one of my kidneys now just waiting for my follow up next week hated the catheter as had to have it for two weeks because of the extra plumbing job it's just a nuisance although my biggest worry was having it taken out and being incontinent but was very pleased to have nearly full control on removal just the Ed to conquer now but remember we are not all the same recovery tends to vary for everyone all the best with your decision Steve

User
Posted 07 Jun 2018 at 18:30

Originally Posted by: Online Community Member

Not an option in any circumstance or not the best / preffered  option?

I believe the older you get the more attractive RT is and certainly  if there is a high risk of local spread RT is preferred as it has effects that extend beyond the prostate. 

Either way the stats say they are equally effective for long term remission.

My Oncologist told me they would not offer me RP as an option. I’m 66 

User
Posted 07 Jun 2018 at 19:18
Did you seek an opinion from a “leading” cancer surgeon such as those promoted in the Daily Mail and its ilk, or from other surgeons of repute with high volumes of RP and good outcomes?

It is often said that surgeons want to operate, likewise oncologists and radiologists tend to stick to their specialities.

I think you are entitled to a couple of second opinions on the NHS. It would be nice to know you have all viable options on the table before you elect for a particular treatment.

User
Posted 07 Jun 2018 at 19:37

I have the full confidence in the NHS team treating me. My treatment plan of 2 weeks Bicalutamide, Triptorelin IM injection, 2 more weeks Bicalutamide, then review at 8 weeks to check progress was what I agreed to. Then depending on results, External beam RT after 3 months Triptorelin.

i will know on the 21st June when my RT will start. Lyn tells me she has never known anyone who hasn’t gone on to RT. Then after 6 weeks RT I guess another review.

To be completely honest, Prostatectomy of any sort was not something I would have gone for.

Gleason score of 4:5 is high, but after 5 various scans my cancer is confined to the prostate and I have no Metastasis at all. So curative treatment was decided by an MDT to be best for me. I asked and was told the team comprised a surgeon as well as a Urologist and specialist nurses, so I trust their decision on my care. But on reading countless studies and case histories online I am satisfied and that’s the main thing.

thanks for the interest in my case

Edited by member 07 Jun 2018 at 19:39  | Reason: Spelling and grammar

 
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