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Open radical prostatectomy- your experiences

User
Posted 09 Mar 2024 at 08:55

Hi everyone, my husband was diagnosed at the end of last year with a Gleason 9 locally advanced prostate cancer. Following zolodex he is now scheduled for open surgery with removal of lymph nodes this coming Wednesday. We only received the date this week so we are less well prepared than we might have been, though of course the clinical team have briefed us on what to expect I think there is no better expert advice than from people who have been through it. Could you share with me your experiences - in particular, things that helped you cope in hospital, helped your recovery when you came home, things I (as the person looking after him) can get or do that will help him in any small way. We know it’s quite a journey ahead but would be really grateful for any advice you can share. Thank you! 

User
Posted 12 Mar 2024 at 01:18
My husband had open RP on the advice of the surgeon - the uro is (or at least was then) considered one of the top PCa specialists in this country and one of the first to do keyhole RP but he advised that in J's case he would get better results by getting his hands in and feeling, particularly in relation to sparing some nerves.

It is not necessarily the case that ED will be more likely with open RP. In fact, statistically, the last time BAUS published the data, it was still the case that open RP had slightly better outcomes in terms of continence, erectile function and recurrence although LRP was better on blood loss and time in hospital. Open RP often means less time on the operating table as well. Unfortunately, BAUS has stopped publishing the annual stats so we will never know when the balance tips from one method to the other.

In terms of the op, J was in hospital for 4 days I think and yes, it takes longer to recover. I see lots of hospitals now state in their patient info leaflets that a man having LRP will need 6-8 weeks off work - generally speaking, a man having open RP will need 10-12 weeks to recover fully. Might need a little longer before he can drive safely as well.

If you have time, buy him some soft track pants with a drawstring & elastic waist in a dark colour and pants (not boxer shorts) one size bigger than usual - M&S do some track bottoms which are tumble-dryable. J had to sleep on his back for the first couple of weeks which he found difficult - looking back, I wonder if one of those pregnancy pillows might have helped.

Lots of books, crosswords, whatever to stop the boredom. They say that you use up 5000KCal per day recovering from abdominal surgery so he will feel exhausted doing nothing!

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

User
Posted 09 Mar 2024 at 10:00
I'm not sure how many here have had open surgery as most of us have had robot assisted RP - or RARP. Most of the side effects of that have been shoulder pain from the gas inflation of the abdomen. But maybe someone can add some advice regarding the open procedure.

After surgery he will of course have a catheter which will remain in place for about 7 days - it's not really a problem unless he catches the swinging pipework which can be painful (you learn quickly!) but the main thing is to keep the area where it enters the penis completely sterile - never use fingers but use pads soaked in antiseptic to clean and when changing/emptying bags.

He will need painkillers for a couple of days, paracetamol should be fine.

The thing is to remember to keep moving - stand up and walk around every 20 minutes but absolutely NO heavy lifting more than a milk bottle. A friend felt so well he started gardening after a week and is now waiting for a hernia op at the incision site.

It's surgery that is performed every day so try not to worry - recovery will take a while but generally progresses steadily once the catheter is removed (that surprisingly is not painful) and he will need to work on his incontinence - it takes longer for some than others but TENA men pads are great.

I suspect that he may lose his erection nerves given it's open surgery but we have all found solutions for this in various forms - but that comes later as recovery comes first :)

Feel free to ask any questions - we are quite a friendly bunch and happy to talk about anything - even the embarrassing stuff :)

Take care!

User
Posted 09 Mar 2024 at 11:01

Jackie, no experience of open surgery, recovery time will probably be longer than RARP similar. Take it easy but keep mobile.

The following conversations has lots of ideas.

https://community.prostatecanceruk.org/posts/t29021-Practical-preparation-for-surgery#post278042

 

https://community.prostatecanceruk.org/posts/t29907-RP-surgery-tomorrow#post287726

 

Thanks Chris

User
Posted 09 Mar 2024 at 12:19

Hi Jackie,

Sorry that you've had to find us, but glad you have. Welcome to the forum.

I can't help with any actual experience of open surgery, I had robotic surgery.

But things in this link might help

https://prostatecanceruk.org/prostate-information-and-support/treatments/surgery

Edited by member 09 Mar 2024 at 13:06  | Reason: Not specified

User
Posted 09 Mar 2024 at 12:42

Hi Jackie

I had RP surgery back in July 2020. Due to Covid I had the op in The Spire private hospital which was a bonus. Trying to get up the next day after the op was ecriuciating and I couldn't do it. Foolishly with hindsight I had refused anything stronger than paracetomol. I agreed to take codeine and that made all the difference as the following day was much better and I managed to get out of bed and sit in a chair. I was discharged after 3 days as I was able to get up and walk about albeit with a catheter in tow!! To be honest I found the catheter worse than any pain or discomfort. I hated it! Also had an accident one night when I forgot to put the bag in a bucket and it leaked all over the bedroom carpet so beware of that!!

I was surprised and at first disheartened by the amount of leakage once the catheter was removed . Some guys recover from this quicker than others so it does vary a lot. I still have some problems even now. The pelvic floor exercises are important and aid recovery.

Overall I have recovered quite well and I got back to doing most things within a few months.

Happy to answer any questions you may have. Hope all goes well for your husband.

User
Posted 09 Mar 2024 at 15:37

Hi Derek, the clinical team recommended open vs robotic because of the stage and grade, surgeon said he wants to get his hands in there (literally) as he said it gives the best chance of complete clearance of all affected areas. My husband is 54 and otherwise fit and well so should cope well with the surgery. But still, a daunting prospect. 

User
Posted 10 Mar 2024 at 20:22

Hi JackieJ. I was also diagnosed with locally advanced PCa (T3bN0M0, Gleason 8). The surgeon recommended Open Surgery for the very same reason you mention. I had 34 lymph nodes dissected, one of with was found to be positive. My experience post surgery is very much as JacksonL describes. Your husband will likely need codeine based pain killers for the first few days. It is a large wound - navel to pubic bone, so take what they offer. Codeine based pain killers are well known for causing constipation so have some laxatives and/or glycerine suppositories at the ready when he gets home. I recovered quite well from the surgery itself but I did experience a couple of complications further down the line. The catheter did cause me some pain at the tip of the penis. Instillagel (or similar) is good for that.

A baggy pair of jogging bottoms are the most practical things to wear post surgery. He will have a catheter bag strapped to his leg and possible a drain bag if there is extensive lymph node dissection, so the baggier the better. It's also worth getting a mattress protector in case of catheter leaks.

Erectile dysfunction is a likely side effect of surgery but it shouldn't make any whether it's open surgery or RARP. It is more to do with where the cancer is in the prostate in relation to the nerve bundles. My surgeon managed nerve sparing on one side and partial on the other side. After about 4.5 months 20mg of Tadalafil and a Durex cock ring would just about work for me. 

I hope it all goes well. Chris

User
Posted 11 Mar 2024 at 09:23

If you are in Worcestershire then it's more than likely the same surgeon. There does seem to be different approaches in different areas regarding treatment of a T3b diagnosis as Derek can testify. I think you have to go into it with the expectation that follow up SRT will be a likely outcome. I chose surgery because three years of HT sounded like slow torture. I know some fair better than others on HT but I didn't fancy it. I wanted to just get it over with as quickly as possible and I suppose part of me said I want this out.

User
Posted 11 Mar 2024 at 13:02

Chris, you are so right, if I knew what was ahead of me on 3 years HT I would have pushed more or gone private and paid for surgery. I’m NOT in Any way suggesting surgery is an easy option, especially open surgery which I would imagine has a longer recovery period than RARP but hopefully your husband Jackie will have a good recovery. And is he requires SRT at some point, so what? At least he has a Plan B.

Im sitting here about to down yet more ibuprofen and paracetamol to easy my painful legs ….I also find that alcohol really helps… fortunately😊

I’m out in Fuerteventura ATM and seriously considering visiting the CBD shop to see what they can do for me.

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User
Posted 09 Mar 2024 at 10:00
I'm not sure how many here have had open surgery as most of us have had robot assisted RP - or RARP. Most of the side effects of that have been shoulder pain from the gas inflation of the abdomen. But maybe someone can add some advice regarding the open procedure.

After surgery he will of course have a catheter which will remain in place for about 7 days - it's not really a problem unless he catches the swinging pipework which can be painful (you learn quickly!) but the main thing is to keep the area where it enters the penis completely sterile - never use fingers but use pads soaked in antiseptic to clean and when changing/emptying bags.

He will need painkillers for a couple of days, paracetamol should be fine.

The thing is to remember to keep moving - stand up and walk around every 20 minutes but absolutely NO heavy lifting more than a milk bottle. A friend felt so well he started gardening after a week and is now waiting for a hernia op at the incision site.

It's surgery that is performed every day so try not to worry - recovery will take a while but generally progresses steadily once the catheter is removed (that surprisingly is not painful) and he will need to work on his incontinence - it takes longer for some than others but TENA men pads are great.

I suspect that he may lose his erection nerves given it's open surgery but we have all found solutions for this in various forms - but that comes later as recovery comes first :)

Feel free to ask any questions - we are quite a friendly bunch and happy to talk about anything - even the embarrassing stuff :)

Take care!

User
Posted 09 Mar 2024 at 10:53

Thank you Steve! 
grateful for anyone’s open surgery experiences that they can share. 

User
Posted 09 Mar 2024 at 11:01

Jackie, no experience of open surgery, recovery time will probably be longer than RARP similar. Take it easy but keep mobile.

The following conversations has lots of ideas.

https://community.prostatecanceruk.org/posts/t29021-Practical-preparation-for-surgery#post278042

 

https://community.prostatecanceruk.org/posts/t29907-RP-surgery-tomorrow#post287726

 

Thanks Chris

User
Posted 09 Mar 2024 at 12:19

Hi Jackie,

Sorry that you've had to find us, but glad you have. Welcome to the forum.

I can't help with any actual experience of open surgery, I had robotic surgery.

But things in this link might help

https://prostatecanceruk.org/prostate-information-and-support/treatments/surgery

Edited by member 09 Mar 2024 at 13:06  | Reason: Not specified

User
Posted 09 Mar 2024 at 12:42

Hi Jackie

I had RP surgery back in July 2020. Due to Covid I had the op in The Spire private hospital which was a bonus. Trying to get up the next day after the op was ecriuciating and I couldn't do it. Foolishly with hindsight I had refused anything stronger than paracetomol. I agreed to take codeine and that made all the difference as the following day was much better and I managed to get out of bed and sit in a chair. I was discharged after 3 days as I was able to get up and walk about albeit with a catheter in tow!! To be honest I found the catheter worse than any pain or discomfort. I hated it! Also had an accident one night when I forgot to put the bag in a bucket and it leaked all over the bedroom carpet so beware of that!!

I was surprised and at first disheartened by the amount of leakage once the catheter was removed . Some guys recover from this quicker than others so it does vary a lot. I still have some problems even now. The pelvic floor exercises are important and aid recovery.

Overall I have recovered quite well and I got back to doing most things within a few months.

Happy to answer any questions you may have. Hope all goes well for your husband.

User
Posted 09 Mar 2024 at 13:07

Thank you so much for sharing your experiences Jackson! It’s really helpful. I’m glad to hear you’ve recovered well. 

User
Posted 09 Mar 2024 at 13:53

Hi Jackie,

I hope you don’t mind me asking but Just out of interest I’m wondering why your husbands having open surgery rather than RARP or Laproscopic surgery?

I wish him good luck with the procedure and a speedy(but steady!) recovery.

Derek

User
Posted 09 Mar 2024 at 15:37

Hi Derek, the clinical team recommended open vs robotic because of the stage and grade, surgeon said he wants to get his hands in there (literally) as he said it gives the best chance of complete clearance of all affected areas. My husband is 54 and otherwise fit and well so should cope well with the surgery. But still, a daunting prospect. 

User
Posted 10 Mar 2024 at 20:22

Hi JackieJ. I was also diagnosed with locally advanced PCa (T3bN0M0, Gleason 8). The surgeon recommended Open Surgery for the very same reason you mention. I had 34 lymph nodes dissected, one of with was found to be positive. My experience post surgery is very much as JacksonL describes. Your husband will likely need codeine based pain killers for the first few days. It is a large wound - navel to pubic bone, so take what they offer. Codeine based pain killers are well known for causing constipation so have some laxatives and/or glycerine suppositories at the ready when he gets home. I recovered quite well from the surgery itself but I did experience a couple of complications further down the line. The catheter did cause me some pain at the tip of the penis. Instillagel (or similar) is good for that.

A baggy pair of jogging bottoms are the most practical things to wear post surgery. He will have a catheter bag strapped to his leg and possible a drain bag if there is extensive lymph node dissection, so the baggier the better. It's also worth getting a mattress protector in case of catheter leaks.

Erectile dysfunction is a likely side effect of surgery but it shouldn't make any whether it's open surgery or RARP. It is more to do with where the cancer is in the prostate in relation to the nerve bundles. My surgeon managed nerve sparing on one side and partial on the other side. After about 4.5 months 20mg of Tadalafil and a Durex cock ring would just about work for me. 

I hope it all goes well. Chris

User
Posted 11 Mar 2024 at 07:18

Thank you so much Chris for your insights and helpful advice. By your username I suspect my husband might be under the care of the same surgical team so it’s really reassuring to hear. 

User
Posted 11 Mar 2024 at 07:27

Jackie, it sounds like you have a very experienced surgeon who really knows what he’s doing, so that’s very encouraging for a successful outcome. I was T3BN0M0 but was not offered surgery of any kind much to my disappointment.

Good Luck to your husband and keep us posted on how he’s doing.

Derek

User
Posted 11 Mar 2024 at 07:42

Thank you Derek. I’m sorry you didn’t get the choice of surgery. That must be tough. Thank you for your good wishes. 

User
Posted 11 Mar 2024 at 09:23

If you are in Worcestershire then it's more than likely the same surgeon. There does seem to be different approaches in different areas regarding treatment of a T3b diagnosis as Derek can testify. I think you have to go into it with the expectation that follow up SRT will be a likely outcome. I chose surgery because three years of HT sounded like slow torture. I know some fair better than others on HT but I didn't fancy it. I wanted to just get it over with as quickly as possible and I suppose part of me said I want this out.

User
Posted 11 Mar 2024 at 12:48

Hi Chris, yes I think that’s how my husband feels- he wants it removed and then will cope better psychologically with the next part of the journey I think. 

User
Posted 11 Mar 2024 at 13:02

Chris, you are so right, if I knew what was ahead of me on 3 years HT I would have pushed more or gone private and paid for surgery. I’m NOT in Any way suggesting surgery is an easy option, especially open surgery which I would imagine has a longer recovery period than RARP but hopefully your husband Jackie will have a good recovery. And is he requires SRT at some point, so what? At least he has a Plan B.

Im sitting here about to down yet more ibuprofen and paracetamol to easy my painful legs ….I also find that alcohol really helps… fortunately😊

I’m out in Fuerteventura ATM and seriously considering visiting the CBD shop to see what they can do for me.

User
Posted 12 Mar 2024 at 01:18
My husband had open RP on the advice of the surgeon - the uro is (or at least was then) considered one of the top PCa specialists in this country and one of the first to do keyhole RP but he advised that in J's case he would get better results by getting his hands in and feeling, particularly in relation to sparing some nerves.

It is not necessarily the case that ED will be more likely with open RP. In fact, statistically, the last time BAUS published the data, it was still the case that open RP had slightly better outcomes in terms of continence, erectile function and recurrence although LRP was better on blood loss and time in hospital. Open RP often means less time on the operating table as well. Unfortunately, BAUS has stopped publishing the annual stats so we will never know when the balance tips from one method to the other.

In terms of the op, J was in hospital for 4 days I think and yes, it takes longer to recover. I see lots of hospitals now state in their patient info leaflets that a man having LRP will need 6-8 weeks off work - generally speaking, a man having open RP will need 10-12 weeks to recover fully. Might need a little longer before he can drive safely as well.

If you have time, buy him some soft track pants with a drawstring & elastic waist in a dark colour and pants (not boxer shorts) one size bigger than usual - M&S do some track bottoms which are tumble-dryable. J had to sleep on his back for the first couple of weeks which he found difficult - looking back, I wonder if one of those pregnancy pillows might have helped.

Lots of books, crosswords, whatever to stop the boredom. They say that you use up 5000KCal per day recovering from abdominal surgery so he will feel exhausted doing nothing!

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

User
Posted 12 Mar 2024 at 07:24

Thank you so much Lyn. That’s really encouraging to hear. Op is tomorrow but we are feeling much better prepared now thanks to all of you here. I hope your husband is doing well. 

 
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