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User
Posted 14 Mar 2020 at 12:24

Hi Folks,

Spent ages reading loads of threads trying to get as well informed as I can, and thanks for all the info - really amazing forum!!

My situation..diagnosed mid Feb20, PSA 3, Gleason 7 (3+4), staging T2a N0 Mx, biopsy did 15 cores (left 0/6 cancerous, targeted left 0/3 cancerous, right 5/6 cancerous 10%). Localised, intermediate risk cancer. I'm 56, otherwise fit & healthy and not overweight. Saw oncology and urology folks this week for post diagnosis consultation, both teams strongly recommend surgery. Nerve sparing, robotic process will be used and I'm almost certain I'll go this route. Looking to start the ball rolling next week with the hospital and expecting surgery within a couple of weeks.

So...my question. I want to make sure things are well prepared at home post op. I'm sure we'll get lots of info from hospital about this, but does anyone have and suggestions, tips, hints etc that will make life easier for the first 3-4 weeks post op? All info greatly appreciated.

Many thanks indeed.

User
Posted 14 Mar 2020 at 14:51

Wish you the best on your treatment.

My suggestions:

1)  If you can find a physiotherapist that specialize in pelvic floor issues,  they can be very helpful to ensure you do the exercises (Kegels) the right way.   If you can fit it in, it's good to see one pre-surgery.  Start doing pelvic floor exercises  now.  If you can't see a specialist beforehand,  look up some videos (I'll link one below). 

2)  Get some loose fitting track pants/sweat pants.  You will loose fit your catheter, and post-catheter removal you will be going to urinate more frequently.

3)  Get some pads for post-catheter removal.   I posted before that a really good tip from my cancer center (one of the top ones worldwide) is to get newborn diapers instead of products marketed to adults.  Newborn diapers are more absorbent, less bulky, cheaper, and actually fit better than adult products.   You wrap you penis/scrotum with the diaper (back of diapers under the scrotum), and use the diaper taps to fully secure back to front.   Someone else here posted that the nurse they saw suggested premmie diapers (smaller size than newborn).   I can see how premmie would fit even better, but it's easier to buy newborn size in stores.

 

Here is a very informative webinar about Pelvic Floor rehab. [Note while the presenter is male,  most physiotherapists who specialize in this area are female,  because female clients (after child birth) are more comfortable with a female therapists):

Part 1

https://www.youtube.com/watch?v=U10K6V-hAKs

Part 2

https://www.youtube.com/watch?v=rPe6eQyaQ4k

Part 3 (with some specific exercises)

https://www.youtube.com/watch?v=Ngj7ymhedts&t=756s

 

 

 

 

 

 

Edited by member 14 Mar 2020 at 14:52  | Reason: Not specified

User
Posted 14 Mar 2020 at 14:53
You can read my contemporaneous notes about my surgery below. I think I was exceptionally lucky with my recovery, and I hope yours is as successful.

Best of luck.

Cheers, John.

https://community.prostatecanceruk.org/posts/t16224-Retzius-Sparing-Laparoscopic-Radical-Prostatectomy

User
Posted 14 Mar 2020 at 16:22

Hi X1

Sorry to see that you are here but re Post OP RARP: Great posts above so I suggest you reread them as sometimes at your stage it is difficult to take in all the info.

Hospital Procedure. Some Hospitals offer overnight accommodation for the spouse/partner/carer in their associated nursing quarters. You will probably only be in for 1 night. We found this service really good & we only live 1 hour + from the Hospital. This will save a load of travel hassle post op in case discharge is delayed 

Pelvic Floor Exercises. Never too late to start & carry on.

Loads of advice above re clothing but a mattress protector may be an investment just in case. They will tell you to do nothing for 6 weeks, not even housework. Take their advice.

User
Posted 14 Mar 2020 at 21:05

I would recommend taking 'fybogel' for several days before your surgery, and for two weeks after surgery. Really helped in my case after receiving the advice on this forum.

A small bucket, at the side of your bed, to hold your urine nightbag.

Peacocks sell tracksuit bottoms for £10...soft and comfy. Flannel bedtime shorts from tesco...better than cotton i found.

I bought instillagel from amazon, but only used it the once as irritation from the catheter was manageable.

I wish you all the very best with your op' and for the future.

User
Posted 14 Mar 2020 at 21:37
I doubt very much that your op will be in the next couple of weeks so plenty of time to get your pelvic floor tip top
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Mar 2020 at 22:28

Hi X1,

I never understand those registration numbers.

Good luck with your op.  When you come out you'll have a catheter and bag.  That's a learning spell, keeping all clean during bag change is a major factor.

You'll need room next to your bed for the overnight bag stand and the pipe going out from you to the big overnight bag.  It's not that big though, smaller than a shopping bag.  Up to 2 litres came out at night with me and I didn't ever drink after 7pm.

When the catheter is gone you'll need pads and some like a plastic cover on their sheet although I didn't and never had a problem at night.  I chose Boots pads but many like the Tena ones.

(Maybe some would like a cover from day 1.)

When you have a pipe coming out you tend to be limited in how you sleep.

Walking out can be a problem if the water leaks without you knowing and then your pad is full without you knowing and your trousers are the next stop unless you carry a spare pad.  Maybe more than one spare.

You won't be driving for several weeks.

It's a strange thing but I was very happy to have the lesion out of me and a good feeling lasted for a couple of weeks until I started thinking more about the appointment which told me the pathology and psa result.  That was 8 weeks later but should actually have been earlier except round Christmas it was longer.

Good luck.  Peter

User
Posted 14 Mar 2020 at 23:51

My list for surgery went something like this:

2xBlack canterbury stadium full length zip trousers (really made managing catheter bag a breeze)

Traveljohn portable urinal gel pack. Didn’t use it in the end but useful if you get caught on a train without a loo. Can discretely empty catheter into it and sets hard with no smell. Effectively extends your range.

roku streaming stick and extension cables for room. Tv is ok but can be limited. Useful if you don’t sleep.

chargers etc

lactulose solution from pharmacy. Sorted my constipation our day 2 but got told off for self medicating. 🤭

Tena for men level 2 and 3 for post catheter.

tena bed mats

waterproof bed protector.

hospital grade waterproof duvet and pillow - £20 amazon. Cheap and I never wet the bed but good for reassurance.

a builders bucket for the night catherter stand.

ibuprofen/paracetamol- but I didn’t have any pain post op when home.

sports type underwear as more supporting post op with catheter in place. Plus after catheter useful for keeping tena pad in place.

lots of veg, prunes, seeds and nuts at home. This really helped mange’s a couple of days of constipation. 

antiseptic wipes 

will post more if I think of anything

TG

Edited by member 14 Mar 2020 at 23:53  | Reason: Not specified

User
Posted 15 Mar 2020 at 07:18
Prostate Cancer UK can send you their "Surgical Support Pack" which includes sample incontinence packs.

The hospital will also give you some when the remove the catheter. These will be enough to get you started

until you see whether you actually need any. UCLH advise folk not to go spending a lot of money on buying

large quantities of pads before they find out whether they actually need any.

I attended the UCLH surgical school - a 3 hour seminar for patients who are likely to have the op.

It was extremely helpful. I echo the comments made about starting Kegel exercises now. Get the NHS "Squeezy Men" app

and use it religiously. It is also worth getting yourself up to peak physical condition before the op. Go for runs etc.

COVID-19 cases are now ramping up, and I imagine that within a few weeks, the NHS will be postponing all

non-urgent treatments, using all available ventilators and anesthetists to treat severe infections

and converting operating theatres into ICUs. This means your op might end up getting postponed till after the epidemic.

User
Posted 15 Mar 2020 at 11:30

Hi Steven

i feel fortunate I found Retzius sparing approach as it made surgery and much easier option for me plus finding the fantastic prof. I spoke to Bollinge when trying to decide pathway plus I was fortunate to find a few other guys who had had the same approach and had really good outcomes in terms of continence. Post op Erections report were mixed mostly. I wasn’t totally dry after catheter removing as leaked/dripped  a little bit that all sorted itself at six weeks. My erections have been strong almost immediately after post op...not great with a catheter. But I count myself very lucky with this given one nerve bundle was partially removed. 

if you need to chat about it more I’m happy to take a call etc. Just pm me any time.

TG

 

User
Posted 15 Mar 2020 at 11:32

From memory it’s available on NhS at Guildford. I had mine privately at London Bridge Guys as was able to be seen very quickly once I chose pathway. Cannot recommend it more as great stay, staff, food and no pain at all. Just a bit of a trek on the train but well worth it.

User
Posted 15 Mar 2020 at 14:06

Mine was on the NHS (at my local hospital as it happens). 

One thing I would say, is that while TG and one or two others have had excellent outcomes ED wise, it's probably wise to mentally prepare for a possible longer term recovery in that department. 

Best of luck.

User
Posted 15 Mar 2020 at 14:34
In terms of continence, the stats are looking fantastic but even the leading lights in Retzius sparing don't make any major claims around ED as the outcomes have been very mixed.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Mar 2020 at 09:40

I had my op last week, so am still in the catheter stage. My hospital prescribed lactulose, but I was told not to overdo the fibre - the object is not to do a lot of poo, but to go regularly and for it to be soft. Consultant suggested "soft" foods, so mash potato rather than chips, etc.

I've needed a catheter before (my bladder reacts badly to a general anaesthetic) so I'm probably a bit blase about them compared to others. Never experienced any leaks in the catheter, but you can get some leakage where it enters the penis, so personal hygeine is important.

Make sure you get spare tapes so you can change them when showering. You will also get the anti-DVT stockings - get at least one spare pair of those too. You should get them as a matter of course, but I've found that organisation in Hospitals isn't brilliant and things routinely get forgotten in the rush.

I feel I should point out that Ibuprofen is not a pain reliever, but an anti-inflammatory. If you are prescribed it you should take it, pain or no. But take no more than advised, as it has side effects. For me one of these was "reflux" at night - the answer was to take them immediately after food and not too late.

P.S. No-one else has mentioned it, but I got some pain from trapped gas for several days after the op, which I understand is not unusual. I was advised on strong mints, preferably followed by hot water ( I had herbal tea to make it more platable) as a good method of dispersal and it seemd to work.

Edited by member 16 Mar 2020 at 09:48  | Reason: Not specified

User
Posted 16 Mar 2020 at 11:11
Some hospitals don't give the stockings to all post-surgery patients, only those assessed as at higher risk of DVT. Not all hospitals require patients to self-inject either.

The trapped wind is applicable only to men that have keyhole / Da Vinci RP. Once out for the count, the patient is tipped head down on the operating table and the abdomen is filled with gas to create some space and make accessing the prostate easier. This gas can take a few days to disperse - the most common presentation is pain in & around the shoulder blades.

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

User
Posted 16 Mar 2020 at 13:09
Hi XL-5,

You can find details about Retzius-sparing if you search for “Santis prostate’. It costs twenty grand private, free on the NHS, but Professor Whocannotbenamedhere says he no longer gets to choose his patients at The Royal Surrey County Hospital, so you may end up with one of his protégés, who may or may not practise that technique.

In any event they can only see what to salve when they delve into you, and I lost erectile function and 2”, together with my cancer, as I always point out to the Prof. on his ‘thank you’ Christmas card 😂😂😂

Find a high-volume surgeon with good outcomes.

Best of luck.

Cheers, John.

Show Most Thanked Posts
User
Posted 14 Mar 2020 at 14:51

Wish you the best on your treatment.

My suggestions:

1)  If you can find a physiotherapist that specialize in pelvic floor issues,  they can be very helpful to ensure you do the exercises (Kegels) the right way.   If you can fit it in, it's good to see one pre-surgery.  Start doing pelvic floor exercises  now.  If you can't see a specialist beforehand,  look up some videos (I'll link one below). 

2)  Get some loose fitting track pants/sweat pants.  You will loose fit your catheter, and post-catheter removal you will be going to urinate more frequently.

3)  Get some pads for post-catheter removal.   I posted before that a really good tip from my cancer center (one of the top ones worldwide) is to get newborn diapers instead of products marketed to adults.  Newborn diapers are more absorbent, less bulky, cheaper, and actually fit better than adult products.   You wrap you penis/scrotum with the diaper (back of diapers under the scrotum), and use the diaper taps to fully secure back to front.   Someone else here posted that the nurse they saw suggested premmie diapers (smaller size than newborn).   I can see how premmie would fit even better, but it's easier to buy newborn size in stores.

 

Here is a very informative webinar about Pelvic Floor rehab. [Note while the presenter is male,  most physiotherapists who specialize in this area are female,  because female clients (after child birth) are more comfortable with a female therapists):

Part 1

https://www.youtube.com/watch?v=U10K6V-hAKs

Part 2

https://www.youtube.com/watch?v=rPe6eQyaQ4k

Part 3 (with some specific exercises)

https://www.youtube.com/watch?v=Ngj7ymhedts&t=756s

 

 

 

 

 

 

Edited by member 14 Mar 2020 at 14:52  | Reason: Not specified

User
Posted 14 Mar 2020 at 14:53
You can read my contemporaneous notes about my surgery below. I think I was exceptionally lucky with my recovery, and I hope yours is as successful.

Best of luck.

Cheers, John.

https://community.prostatecanceruk.org/posts/t16224-Retzius-Sparing-Laparoscopic-Radical-Prostatectomy

User
Posted 14 Mar 2020 at 16:22

Hi X1

Sorry to see that you are here but re Post OP RARP: Great posts above so I suggest you reread them as sometimes at your stage it is difficult to take in all the info.

Hospital Procedure. Some Hospitals offer overnight accommodation for the spouse/partner/carer in their associated nursing quarters. You will probably only be in for 1 night. We found this service really good & we only live 1 hour + from the Hospital. This will save a load of travel hassle post op in case discharge is delayed 

Pelvic Floor Exercises. Never too late to start & carry on.

Loads of advice above re clothing but a mattress protector may be an investment just in case. They will tell you to do nothing for 6 weeks, not even housework. Take their advice.

User
Posted 14 Mar 2020 at 21:05

I would recommend taking 'fybogel' for several days before your surgery, and for two weeks after surgery. Really helped in my case after receiving the advice on this forum.

A small bucket, at the side of your bed, to hold your urine nightbag.

Peacocks sell tracksuit bottoms for £10...soft and comfy. Flannel bedtime shorts from tesco...better than cotton i found.

I bought instillagel from amazon, but only used it the once as irritation from the catheter was manageable.

I wish you all the very best with your op' and for the future.

User
Posted 14 Mar 2020 at 21:37
I doubt very much that your op will be in the next couple of weeks so plenty of time to get your pelvic floor tip top
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Mar 2020 at 22:28

Hi X1,

I never understand those registration numbers.

Good luck with your op.  When you come out you'll have a catheter and bag.  That's a learning spell, keeping all clean during bag change is a major factor.

You'll need room next to your bed for the overnight bag stand and the pipe going out from you to the big overnight bag.  It's not that big though, smaller than a shopping bag.  Up to 2 litres came out at night with me and I didn't ever drink after 7pm.

When the catheter is gone you'll need pads and some like a plastic cover on their sheet although I didn't and never had a problem at night.  I chose Boots pads but many like the Tena ones.

(Maybe some would like a cover from day 1.)

When you have a pipe coming out you tend to be limited in how you sleep.

Walking out can be a problem if the water leaks without you knowing and then your pad is full without you knowing and your trousers are the next stop unless you carry a spare pad.  Maybe more than one spare.

You won't be driving for several weeks.

It's a strange thing but I was very happy to have the lesion out of me and a good feeling lasted for a couple of weeks until I started thinking more about the appointment which told me the pathology and psa result.  That was 8 weeks later but should actually have been earlier except round Christmas it was longer.

Good luck.  Peter

User
Posted 14 Mar 2020 at 23:51

My list for surgery went something like this:

2xBlack canterbury stadium full length zip trousers (really made managing catheter bag a breeze)

Traveljohn portable urinal gel pack. Didn’t use it in the end but useful if you get caught on a train without a loo. Can discretely empty catheter into it and sets hard with no smell. Effectively extends your range.

roku streaming stick and extension cables for room. Tv is ok but can be limited. Useful if you don’t sleep.

chargers etc

lactulose solution from pharmacy. Sorted my constipation our day 2 but got told off for self medicating. 🤭

Tena for men level 2 and 3 for post catheter.

tena bed mats

waterproof bed protector.

hospital grade waterproof duvet and pillow - £20 amazon. Cheap and I never wet the bed but good for reassurance.

a builders bucket for the night catherter stand.

ibuprofen/paracetamol- but I didn’t have any pain post op when home.

sports type underwear as more supporting post op with catheter in place. Plus after catheter useful for keeping tena pad in place.

lots of veg, prunes, seeds and nuts at home. This really helped mange’s a couple of days of constipation. 

antiseptic wipes 

will post more if I think of anything

TG

Edited by member 14 Mar 2020 at 23:53  | Reason: Not specified

User
Posted 15 Mar 2020 at 07:18
Prostate Cancer UK can send you their "Surgical Support Pack" which includes sample incontinence packs.

The hospital will also give you some when the remove the catheter. These will be enough to get you started

until you see whether you actually need any. UCLH advise folk not to go spending a lot of money on buying

large quantities of pads before they find out whether they actually need any.

I attended the UCLH surgical school - a 3 hour seminar for patients who are likely to have the op.

It was extremely helpful. I echo the comments made about starting Kegel exercises now. Get the NHS "Squeezy Men" app

and use it religiously. It is also worth getting yourself up to peak physical condition before the op. Go for runs etc.

COVID-19 cases are now ramping up, and I imagine that within a few weeks, the NHS will be postponing all

non-urgent treatments, using all available ventilators and anesthetists to treat severe infections

and converting operating theatres into ICUs. This means your op might end up getting postponed till after the epidemic.

User
Posted 15 Mar 2020 at 08:07

Thanks very much folks for all this info...really helpful and I really appreciate your time passing it on.

As I’m anal about these things...been doing continuous reading / research, even tho I thought I’d decided the route to take was da Vinci robotic nerve saving surgery. However, I've come across something which seems even better..’retzius sparing’. This seems even more likely to reduce ED and continence probs post surgery. I understand TechGuy and Bollinge had this process, I’ve read the threads and I’m very keen to get full details. Is this just via private route or is it available on NHS? Really want to explore this option properly. Any further info greatly appreciated.

Thanks, Steven

User
Posted 15 Mar 2020 at 11:30

Hi Steven

i feel fortunate I found Retzius sparing approach as it made surgery and much easier option for me plus finding the fantastic prof. I spoke to Bollinge when trying to decide pathway plus I was fortunate to find a few other guys who had had the same approach and had really good outcomes in terms of continence. Post op Erections report were mixed mostly. I wasn’t totally dry after catheter removing as leaked/dripped  a little bit that all sorted itself at six weeks. My erections have been strong almost immediately after post op...not great with a catheter. But I count myself very lucky with this given one nerve bundle was partially removed. 

if you need to chat about it more I’m happy to take a call etc. Just pm me any time.

TG

 

User
Posted 15 Mar 2020 at 11:32

From memory it’s available on NhS at Guildford. I had mine privately at London Bridge Guys as was able to be seen very quickly once I chose pathway. Cannot recommend it more as great stay, staff, food and no pain at all. Just a bit of a trek on the train but well worth it.

User
Posted 15 Mar 2020 at 14:06

Mine was on the NHS (at my local hospital as it happens). 

One thing I would say, is that while TG and one or two others have had excellent outcomes ED wise, it's probably wise to mentally prepare for a possible longer term recovery in that department. 

Best of luck.

User
Posted 15 Mar 2020 at 14:34
In terms of continence, the stats are looking fantastic but even the leading lights in Retzius sparing don't make any major claims around ED as the outcomes have been very mixed.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Mar 2020 at 09:40

I had my op last week, so am still in the catheter stage. My hospital prescribed lactulose, but I was told not to overdo the fibre - the object is not to do a lot of poo, but to go regularly and for it to be soft. Consultant suggested "soft" foods, so mash potato rather than chips, etc.

I've needed a catheter before (my bladder reacts badly to a general anaesthetic) so I'm probably a bit blase about them compared to others. Never experienced any leaks in the catheter, but you can get some leakage where it enters the penis, so personal hygeine is important.

Make sure you get spare tapes so you can change them when showering. You will also get the anti-DVT stockings - get at least one spare pair of those too. You should get them as a matter of course, but I've found that organisation in Hospitals isn't brilliant and things routinely get forgotten in the rush.

I feel I should point out that Ibuprofen is not a pain reliever, but an anti-inflammatory. If you are prescribed it you should take it, pain or no. But take no more than advised, as it has side effects. For me one of these was "reflux" at night - the answer was to take them immediately after food and not too late.

P.S. No-one else has mentioned it, but I got some pain from trapped gas for several days after the op, which I understand is not unusual. I was advised on strong mints, preferably followed by hot water ( I had herbal tea to make it more platable) as a good method of dispersal and it seemd to work.

Edited by member 16 Mar 2020 at 09:48  | Reason: Not specified

User
Posted 16 Mar 2020 at 11:11
Some hospitals don't give the stockings to all post-surgery patients, only those assessed as at higher risk of DVT. Not all hospitals require patients to self-inject either.

The trapped wind is applicable only to men that have keyhole / Da Vinci RP. Once out for the count, the patient is tipped head down on the operating table and the abdomen is filled with gas to create some space and make accessing the prostate easier. This gas can take a few days to disperse - the most common presentation is pain in & around the shoulder blades.

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

User
Posted 16 Mar 2020 at 13:09
Hi XL-5,

You can find details about Retzius-sparing if you search for “Santis prostate’. It costs twenty grand private, free on the NHS, but Professor Whocannotbenamedhere says he no longer gets to choose his patients at The Royal Surrey County Hospital, so you may end up with one of his protégés, who may or may not practise that technique.

In any event they can only see what to salve when they delve into you, and I lost erectile function and 2”, together with my cancer, as I always point out to the Prof. on his ‘thank you’ Christmas card 😂😂😂

Find a high-volume surgeon with good outcomes.

Best of luck.

Cheers, John.

 
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