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Decided on surgery

User
Posted 20 Feb 2025 at 13:53

Hello again folks, as you can see in my bio I was diagnosed 2 weeks ago and today I’ve had a meeting with my CNS and consultant surgeon to decide what my future treatment will be. 
I’d already pretty much decided what route I was going but was really helped making my final decision by the lovely surgeon I spoke to. 
we’ve decided that surgery will be the best route for me given my age and general health. The surgeon I spoke with is very experienced and is confident that I’ll be back on my feet again sooner rather than later. 
He ran through my scan and biopsy with me insisting that the cancer I have was very slow growing and that I might not have issues for many years, but he wants to get my surgery done while I’m youngish and fit. 
They said that I could go in for the operation in 2 weeks but I asked for a bit more time as my father is having treatment for prostate cancer starting in March and I’m his only family so need to be able to help him. There’s also my 7 year old to take into consideration we have holidays booked in May and July and I want to make sure he has the best time. Then I’ve got that worry in the back of my mind that I’m leaving it too long and that It will have progressed. 
I’m trying my best to do what best for me and my family. I was confident on my decision when I left the hospital, but now the seeds of doubt are in my mind as to if I’m leaving it to long and should act sooner. 
I’ve decided to have surgery the week beginning the 18th August. Just hope the decision I’ve made Is the right one. 
thanks 

gary 

 

User
Posted 23 Feb 2025 at 21:07

thanks again for the replies. I’ve decided to move the surgery forward and going into hospital around 18th March. 

User
Posted 20 Feb 2025 at 15:29

Look I am no expert and worry and second guess all the time but if your surgeon is happy to wait until after your holiday then I would accept their advice. Believe you me I err on the side of caution all the time but if you have a slow growing cancer you will be fine until after your holiday. Enjoy

User
Posted 22 Feb 2025 at 11:33

Good luck. I think once you have definitively made up your mind you feel better. It is so difficult because until the surgery is undertaken you never fully know what you are dealing with. If you have surgery soon you should be able to enjoy your planned holiday.

User
Posted 24 Feb 2025 at 06:32

Best of luck Gary

With this disease it’s best to get it out asap and then you can focus on moving on with life and putting this all behind you.

Please don’t worry at all about surgery. I had tears randomly rolling down my face in the lead up but I really shouldn’t have been concerned at all as it was all very trouble and pain free. Hardest bit was just ensuring to following medical advice and not doing anything silly post op.

To make things easier during the process the following helped me loads with massive thanks to the folks on here for their MacGyver skills advice and support.

For the hospital:

Travel light but don’t carry anything post op. 
if the surgery is early check in consider staying close in a hotel to reduce stress on the day etc

Super Long Charger cable for phone and charge pack. 

media box as hospital tv can be mixed bag and you won’t sleep much night after surgery. I also took an hdmi lead etc for Roku and set it up pre-op on the tv and connected to hospital WiFi 

Post op:

Full length zip shell sports trousers…these are super helpful for managing the catheter urine bags you will have for around two weeks post op. I bought 3xcanterbury open hen stadium joggers which proved a godsend.

large builders bucket to stand the night catheter bag in to ensure it doesn’t fall.

i went a bit ott on waterproofing the bed. Bought a waterproof mattress protector and also hospital type water proof single divet and pillow. All just belt and braces for reassurance but cheap and did the job. 

Tena absorbent sheet 

tena level 3 pads for post catheter as can take a few weeks for the drips/leaks etc to stabilise.

tena level 2 pad as things improve.

Full continence should be ok and just take a bit of time as the surgical site settles. Takes around five weeks for stitches to start to soften etc I was continent after catheter removal but will leaks and squirts that happen more when tired.

a lot will have happened downstairs so it just takes a bit of time for everything to settle as long as you follow medical advice.

a lot will have happened downstairs so it just takes a bit of time for everything to settle as long as you follow medical advice.

baby wipes are always useful.

Sterile wipes are helpful for wiping down etc

I also found those travel Jon or Shewee type wee bags filled with gel we are useful as a backstop for travelling. Mainly for the car if you can’t get out and use the toilet quick enough but they were rarely used. Most of the stuff you have is really for reassurance and comfort and just to make life a little bit easier Post op.

hospital will give you some stuff and possibly more if you’re going private which will take care of most of the management.

 

Hospital will give you some stuff and possibly more if you’re going private which will take care of most of the management.

For immediate postop constipation was an issue which is very common. The hospital gave me but I also had in the fridge some lactulose that I purchased from a chemist after telling them what I needed and why.

which is very common. The hospital gave me but I also had in the fridge some lactulose that I purchased from a chemist after telling them what I needed and why.

highly recommend a good diet postop of vegetable soups with some meat for a balanced protein diet. I found some dietary fibre very useful and moderate amount of figs, fruit seeds and nuts which my gf sorted and that easy the guts into settling without too much fuss. Just keep super hydrated etc

also set up any area in the lounge where you can sit in a reclined position which is much more comfortable I found.

also set up any area in the lounge where you can sit in a reclined position which is much more comfortable I found.

 

If you work at a desk on a computer, it’s useful to get one of those haemorrhoid or pile cushions with a hole in the middle to take pressure off that area when working

other than that should be okay. If you look through my operation thread it should give you a few hints and tips on route on the journey.

it’s all a bit of a rollercoaster ride as you know but once you’re through it you wonder why you worried so much and hopefully you can put it all behind you.

 

it’s all a bit of a rollercoaster ride as you know but once you’re through it you wonder why you worried so much and hopefully you can put it all behind you.

for a while post catheter I didn’t drink beer much because I found at night it would make me leak or even pee myself purely because of the quantity of liquid but wine was fine.

I was back in the gym after month three of recovery and doing dips and pullups gently or bear with a few minor leaks and drips. I found if I just emptied my bladder when it was say half full there were no issues so that was fine.

I was back in the gym after month three of recovery and doing dips and pullups gently or bear with a few minor leaks and drips. I found if I just emptied my bladder when it was say half full there were no issues so that was fine.

 Now just over five years post op . I’m doing three hours gym: weights, cables & calisthenetics without issue but I don’t let my bladder get more than half full and no issues at all.

generally don’t have to think about the bladder it’s all really it’s pretty normal. In stressful situation it can be a bit twitchy and if I have a dental treatment I’ll maybe wear a pad for reassurance but it’s not used at all.

 

generally don’t have to think about the bladder it’s all really it’s pretty normal. In stressful situation it can be a bit twitchy and if I have a dental treatment I’ll maybe wear a pad for reassurance but it’s not used at all.

so happy days and so far cancer free which is the primary goal. The rest of the bits and pieces can be managed and have been and I’m pretty happy today that’s for sure.

so happy days and so far cancer free which is the primary goal. The rest of the bits and pieces can be managed and have been and I’m pretty happy today that’s for sure.

Plus the fact when you get older won’t have all these enlarged prostate related issues that seem to plague the older chaps which is a bonus for sure.

please shout if you have any questions and we’ll all be here for you for the journey and please  use this forum as as a sounding board for anything.

 

 

User
Posted 24 Feb 2025 at 07:44

Good decision Gary IMHO. I wouldn’t wish ADT on my worst enemy😩

Im not saying surgery is without risk and side effects, but knowing what I know now, if I’d been given the option I would have gone down that route for sure.

Good luck and keep us posted on progress!

Derek

User
Posted 25 Feb 2025 at 09:50

Gary, a very good comprehensive post from techguy, below is a link to a preparation for surgery conversation. Don't forget the biscuits. Best wishes for the future.

https://community.prostatecanceruk.org/posts/t31424-I-have-a-date-for-surgery--what-do-i-wear#post304894

Thanks Chris 

Show Most Thanked Posts
User
Posted 20 Feb 2025 at 15:29

Look I am no expert and worry and second guess all the time but if your surgeon is happy to wait until after your holiday then I would accept their advice. Believe you me I err on the side of caution all the time but if you have a slow growing cancer you will be fine until after your holiday. Enjoy

User
Posted 20 Feb 2025 at 15:41

Hi Gary

Good Luck when you have the surgery ,I would be guided by the Surgeon ,if he is OK with the delay then that is fine.I was diagnosed last year with Pc and waited 2 months for the surgery and was desperate to get it done as soon as possible , I was T3a and Gleason score 8 .When you do have the surgery I hope your experience is the same as mine ,only one night in hospital ,minimal pain and good overall treatment.You will see from the comments on the site that managing the incontinence is a challenge, but a small price to pay to get rid of the cancer.I did use the 2 months wait for surgery to my advantage, I started my Pelvic Floor exercises and got my self fit (lost 1 1/2 stone in weight)

all the Best

John

 

 

User
Posted 20 Feb 2025 at 15:54

Thanks for your reply. Yeah that’s my plan get myself as fit as possible and work hard on my pelvic floor exercises to put myself in the best possible shape. 

User
Posted 22 Feb 2025 at 07:45

Hi Gary 

I had similar thoughts when diagnosed in October, we had an annual family holiday booked the week before Christmas, our boys were so excited I didn’t have the heart to have to cancel it because of my surgery. I discussed it with CNS and they were happy for me to wait as the initial discussions were either active surveillance or surgery. If they’re happy for you to wait then it gives you the opportunity to plan things and enjoy some quality time with your son before the op. I wouldn’t say that the surgery has caused too much disruption, not being able to drive interrupted my help with some of the school/club runs, also not being able to be involved in any physical games but after a few weeks you’ll be ok. 
You could request a 3 monthly PSA test for your own peace of mind whilst you’re waiting and if there’s any alarming change you will at least have an opportunity to change your plans if needed. 

User
Posted 22 Feb 2025 at 11:09

Hello, I had a change of heart after I left hospital and decided that I’m going have surgery asap. Thanks for your advice 

User
Posted 22 Feb 2025 at 11:33

Good luck. I think once you have definitively made up your mind you feel better. It is so difficult because until the surgery is undertaken you never fully know what you are dealing with. If you have surgery soon you should be able to enjoy your planned holiday.

User
Posted 23 Feb 2025 at 17:17

I’ve never looked back after surgery as it was less uncomfortable than having my tonsils out although has to be mindful of following medical advice for 3 months post surgery. I was back driving after 2 weeks and mostly normals after than but not doing anything silly.

Only thing I’d be mindful of is kicking the can down the road too far with type 4 cells in play. Post biopsy (3+3) my local team/MDT said it was fine to wait. So pleased I ignored their advice as the scans/biopsies can mask the details unfortunately. Had I waiting without weeks/months I would have gone T3 😵‍💫 Post histology showed the cancer was far more extensive and close to breaking out  than had been shown on biopsy/mpMRI with final classification of 3+4 T2C.

Sooner it’s done you can start to put it behind you and significantly reduced risk of anymore issues plus potential mets and best chance of cure being the final outcome.

Best of luck and please don’t worry about the surgery. I was a mess beforehand but when I woke up really wondered why I had been so stressed as it was a relative breeze.

 

 

Edited by member 23 Feb 2025 at 17:26  | Reason: Not specified

User
Posted 23 Feb 2025 at 20:24
Good luck.

If it is any help, my surgery was mid-April after which I went on an already booked holiday during my daughter's summer half term (end of May).

I won't say I was "recovered" by then - my sphincters were pretty leaky so I needed lots of pads - but psychologically the break was just what I and the family needed at that point.

User
Posted 23 Feb 2025 at 21:07

thanks again for the replies. I’ve decided to move the surgery forward and going into hospital around 18th March. 

User
Posted 24 Feb 2025 at 06:32

Best of luck Gary

With this disease it’s best to get it out asap and then you can focus on moving on with life and putting this all behind you.

Please don’t worry at all about surgery. I had tears randomly rolling down my face in the lead up but I really shouldn’t have been concerned at all as it was all very trouble and pain free. Hardest bit was just ensuring to following medical advice and not doing anything silly post op.

To make things easier during the process the following helped me loads with massive thanks to the folks on here for their MacGyver skills advice and support.

For the hospital:

Travel light but don’t carry anything post op. 
if the surgery is early check in consider staying close in a hotel to reduce stress on the day etc

Super Long Charger cable for phone and charge pack. 

media box as hospital tv can be mixed bag and you won’t sleep much night after surgery. I also took an hdmi lead etc for Roku and set it up pre-op on the tv and connected to hospital WiFi 

Post op:

Full length zip shell sports trousers…these are super helpful for managing the catheter urine bags you will have for around two weeks post op. I bought 3xcanterbury open hen stadium joggers which proved a godsend.

large builders bucket to stand the night catheter bag in to ensure it doesn’t fall.

i went a bit ott on waterproofing the bed. Bought a waterproof mattress protector and also hospital type water proof single divet and pillow. All just belt and braces for reassurance but cheap and did the job. 

Tena absorbent sheet 

tena level 3 pads for post catheter as can take a few weeks for the drips/leaks etc to stabilise.

tena level 2 pad as things improve.

Full continence should be ok and just take a bit of time as the surgical site settles. Takes around five weeks for stitches to start to soften etc I was continent after catheter removal but will leaks and squirts that happen more when tired.

a lot will have happened downstairs so it just takes a bit of time for everything to settle as long as you follow medical advice.

a lot will have happened downstairs so it just takes a bit of time for everything to settle as long as you follow medical advice.

baby wipes are always useful.

Sterile wipes are helpful for wiping down etc

I also found those travel Jon or Shewee type wee bags filled with gel we are useful as a backstop for travelling. Mainly for the car if you can’t get out and use the toilet quick enough but they were rarely used. Most of the stuff you have is really for reassurance and comfort and just to make life a little bit easier Post op.

hospital will give you some stuff and possibly more if you’re going private which will take care of most of the management.

 

Hospital will give you some stuff and possibly more if you’re going private which will take care of most of the management.

For immediate postop constipation was an issue which is very common. The hospital gave me but I also had in the fridge some lactulose that I purchased from a chemist after telling them what I needed and why.

which is very common. The hospital gave me but I also had in the fridge some lactulose that I purchased from a chemist after telling them what I needed and why.

highly recommend a good diet postop of vegetable soups with some meat for a balanced protein diet. I found some dietary fibre very useful and moderate amount of figs, fruit seeds and nuts which my gf sorted and that easy the guts into settling without too much fuss. Just keep super hydrated etc

also set up any area in the lounge where you can sit in a reclined position which is much more comfortable I found.

also set up any area in the lounge where you can sit in a reclined position which is much more comfortable I found.

 

If you work at a desk on a computer, it’s useful to get one of those haemorrhoid or pile cushions with a hole in the middle to take pressure off that area when working

other than that should be okay. If you look through my operation thread it should give you a few hints and tips on route on the journey.

it’s all a bit of a rollercoaster ride as you know but once you’re through it you wonder why you worried so much and hopefully you can put it all behind you.

 

it’s all a bit of a rollercoaster ride as you know but once you’re through it you wonder why you worried so much and hopefully you can put it all behind you.

for a while post catheter I didn’t drink beer much because I found at night it would make me leak or even pee myself purely because of the quantity of liquid but wine was fine.

I was back in the gym after month three of recovery and doing dips and pullups gently or bear with a few minor leaks and drips. I found if I just emptied my bladder when it was say half full there were no issues so that was fine.

I was back in the gym after month three of recovery and doing dips and pullups gently or bear with a few minor leaks and drips. I found if I just emptied my bladder when it was say half full there were no issues so that was fine.

 Now just over five years post op . I’m doing three hours gym: weights, cables & calisthenetics without issue but I don’t let my bladder get more than half full and no issues at all.

generally don’t have to think about the bladder it’s all really it’s pretty normal. In stressful situation it can be a bit twitchy and if I have a dental treatment I’ll maybe wear a pad for reassurance but it’s not used at all.

 

generally don’t have to think about the bladder it’s all really it’s pretty normal. In stressful situation it can be a bit twitchy and if I have a dental treatment I’ll maybe wear a pad for reassurance but it’s not used at all.

so happy days and so far cancer free which is the primary goal. The rest of the bits and pieces can be managed and have been and I’m pretty happy today that’s for sure.

so happy days and so far cancer free which is the primary goal. The rest of the bits and pieces can be managed and have been and I’m pretty happy today that’s for sure.

Plus the fact when you get older won’t have all these enlarged prostate related issues that seem to plague the older chaps which is a bonus for sure.

please shout if you have any questions and we’ll all be here for you for the journey and please  use this forum as as a sounding board for anything.

 

 

User
Posted 24 Feb 2025 at 07:44

Good decision Gary IMHO. I wouldn’t wish ADT on my worst enemy😩

Im not saying surgery is without risk and side effects, but knowing what I know now, if I’d been given the option I would have gone down that route for sure.

Good luck and keep us posted on progress!

Derek

User
Posted 25 Feb 2025 at 08:51

Dear Swannie

With T3a Gleason 8 did you have any nodes removed?if so how was the surgery done?

Mirella (partner Mel)

User
Posted 25 Feb 2025 at 09:50

Gary, a very good comprehensive post from techguy, below is a link to a preparation for surgery conversation. Don't forget the biscuits. Best wishes for the future.

https://community.prostatecanceruk.org/posts/t31424-I-have-a-date-for-surgery--what-do-i-wear#post304894

Thanks Chris 

User
Posted 25 Feb 2025 at 10:11

Originally Posted by: Online Community Member
Dear Swannie

With T3a Gleason 8 did you have any nodes removed?if so how was the surgery done?

Mirella (partner Mel)

Hi Mel.

I was T3a, Gleason 9(4+5). I had robotic surgery and the surgeon remove 9 lymph nodes, which fortunately, all came back all clear. 

 
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