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User
Posted 09 Dec 2021 at 14:56

Hi

 

recently diagnosed- Gleason the good 7, PSA 12, T2 discussed options and robot surgery the only offer- Im inclined for active surveillance but not sure theyre happy doing that.

Slowly have a begrudging acceptance maybe surgery has to happen but I am not happy about it and its side effects. seems mental when i feel fine to agree to something that may harm and help me.. 

am told no rush but they kinda want a decision soon..

D

 

User
Posted 29 Dec 2021 at 13:31

Hi dave

I have seen your post. 
my condition sounds similar to you and like you concerned over surgery options 

can I suggest you read my treatment option of IRE which is not undertaken in UK but may be an option you want to consider 

happy to chat to u 

paul 

User
Posted 09 Dec 2021 at 17:40

Well I'm a bit surprised no kind of brachytherapy is on offer, but they have seen the scans not me. I can see a bit of an argument away from RT you have a life expectancy of about 25 years, can RT really hold the prostate cancer at bay for that long? I hope so as I had RT at 54.

I would give serious thought to active surveillance, it may only push treatment back a year, but it may turn out that your cancer sits dormant for years.

Dave

User
Posted 09 Dec 2021 at 22:15

Its really tough......but serious side effects are not a given. I had surgery 18 months ago and maybe I was lucky but life back to normal

User
Posted 10 Dec 2021 at 01:02

One thing to think about is that your outcomes from surgery are likely to be better at a younger age - recovery definitely slows as you get older.

User
Posted 10 Dec 2021 at 18:29
Personally I'd want to get it sorted out and gone as quickly as possible, but we're all different in that respect, of course. There's no doubt that radical treatment will be required at some point given your age.

Best wishes,

Chris

User
Posted 11 Dec 2021 at 12:12

Takes a while for it all to sink in. I’m just over two year post Retzius sparing Robotic Assisted Radical Prostatectomy + NeuroSAFE. I’d do it again without hesitation as it was very timely and I’ve had a good outcome this far. Full continence very soon after the op and still got my mojo albeit with blanks.

For me I had Gleason 7 (3+4) post op histology which was upgraded from Gleason 6. I was told there was no rush and I could wait quite some time with active surveillance. I had a hunch it was the wrong thing to do as prostate cancer tend to 1) prefer anterior areas of prostate 2) be multifocal With this in mind I decided to move to surgery without delay. Histology showed my decision was very prudent as it was very close to breaking out of the prostate capsule 🥶

Please ask any questions if needed and please read about my journey if that helps.

cheers

Simon

User
Posted 15 Dec 2021 at 18:37

Pleasure Dave.

It’s a hell of a journey but once you’re past the op it’s gets much easier. The pressure coming up to surgery quite immense but I kept it together by getting to the gym quite a bit (got my BMI down to 25 for surgery which is optimum according my surgeon) plus some martial arts light breathing and focusing exercises. Tai Chi basic stuff from YouTube would do it as it’s just trying to focus and stay calm. Pilates very good too as gets that core strength up.

have a look on my main surgery post as should be a shopping list of suggested stuff to get. I pre set my house so everything would be easy to access etc post surgery and made my bedding ready for any leaks etc. one of the best things I bought were double lined shell training trousers ( Canterbury of New Zealand) with a full length zip…made accessing and managing the catheter bag a breeze pretty much anywhere. 

A builders bucket for the night bag stand as helps support etc

media player for when in hospital as gets a bit boring as first night I was up awake mostly in between micro naps.

Plus we are all here if you have any questions….for me that was a massive help pre and post surgery.

try and have a blast over Christmas then come January we are here if you need.

simon

 

User
Posted 15 Dec 2021 at 21:30
Not too long until your surgery but I'd suggest getting a solid month+ in of pelvic floor exercises to help with post-op urinary continence.
User
Posted 15 Dec 2021 at 21:46
User
Posted 16 Dec 2021 at 00:26
Agree with music_man, strengthen your pelvic floor. Start now - the NHS App, "Squeezy" is pretty good for reminding you.
User
Posted 19 Dec 2021 at 20:04

I know you’re not keen on getting the surgery. But honestly I think when it’s out of the way you’ll feel much better. My husband is 56 and the news came as a complete bolt out of the blue for us! It totally floored us and neither of us wanted him to get the op. We were in complete denial. But you the option if you do nothing looks pretty bleak. My OH had surgery at Christie’s in Manchester 11 days ago. He’s already much better and although we’ve got a long journey ahead of us, making the decision and having the op is now behind us and in my opinion that’s one of the hardest parts. We also got a last minute slot with one week’s notice which I know is a bit of a headf**k. But now glad it’s all done with. Wishing you the very best of luck. 

User
Posted 19 Dec 2021 at 21:14
Have you checked out your surgeons stats - https://www.baus.org.uk/patients/surgeons. I only ask as there is a general feeling that one wants a surgeon who does a lot of this type of operation.
User
Posted 20 Dec 2021 at 10:39

Hi Dave

you are able to choose which Trust you want to be treated by and request a certain consultant…

https://www.nhs.uk/nhs-services/hospitals/about-nhs-hospital-services/#choice

So if you do your homework you should be able to get the surgeon you want on the NHS (or at least a very reputable and experienced urology team)

There are some high volume surgeons in the North West. My husband just had RARP with one of them.

Here is a list throughout the U.K. 

https://prostatematters.co.uk/prostate-cancer/where-to-access-robotic-prostatectomy/

User
Posted 20 Dec 2021 at 14:54

Originally Posted by: Online Community Member

Well yes i totally agree- when asking about this however i have been told it is decided nearer the time and a question of who is available. I will ask again at the pre op meeting. Maybe this is easer to do with private care?

This is very true D@ve - meeting and choosing a consultant urologist does not mean that you necessarily get them doing the actual op ... that is something that patients should ask. A big deal is made on this forum of how to choose a great consultant but in reality, those at the top of their field will often be supervising junior surgeons on the day. Paying for private care might make it less likely but for a couple of the really well known urologists in England, their data suggests that they are doing 3-4 RPs every day all year round which is clearly not possible - what they might be doing is supervising two ops in adjacent theatres at the same time.

We did pay to get the surgeon we wanted, and asked for a guarantee that he would actually be doing it. But I know of a member on here who paid for RP privately, chose his surgeon carefully and then on op day, was greeted by a different urologist with the news that the carefully selected one works in a team and wasn't on site that day.     

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

User
Posted 20 Dec 2021 at 20:34

Originally Posted by: Online Community Member

After a biopsy on 24th November, I saw my consultant on 17th December and as I've gone from G3+3 to G3+4 he recommended action, preferably RP, with RT as a close second and AS as his least favoured option. He said they use two centres, both do high volumes of RALP, I could choose either, but wouldn't have a choice of who did it (there is a team of surgeons at both of them).

The last point agrees with what Lyn put, but I have seen several people saying you can choose your surgeon so I am a bit confused on that point.

Under NHS choices you can choose a consultant / surgeon and go on their caseload (if they accept the referral) but being on their caseload doesn't provide a guarantee that they will provide your care. Each consultant has a hierarchy of variously qualified doctors working and training under them. 

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

User
Posted 31 Dec 2021 at 10:42

Good luck today @Dave. I used to HATE people telling me "it will be all OK" because they weren't the ones facing - well, frankly, I was terrified throughout and in the end the anaesthetist put me down hard at my own request to forestall a panic attack - so I will NOT say it will all be OK but based on my experience (and per all the above comments about AS) you are taking the right, brave, course and you are tilting odds already strongly in your favour yet further so good luck today and hereafter and keep us posted.

Edited by member 31 Dec 2021 at 10:43  | Reason: Sentence was too short :-)

User
Posted 31 Dec 2021 at 12:26

Well if THAT's your strongest memory you're doing well. Mine - and I can't believe I am THAT much of an atypical wimp although maybe I am, having stalled for 5y which turned out to be too long but that's a whole separate thread - was that it was "first contact", with nerves to match. I must have been contagious because they missed the MRSA swab which led to all sorts of hoopla when I asked about it on admission. So again, I won't say "you'll be OK" but you're on track.

Show Most Thanked Posts
User
Posted 09 Dec 2021 at 15:04
Have they explained why only surgery has been offered? Have you seen an oncologist or only a urologist?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Dec 2021 at 16:11

yes seen urologist and oncologist...

They said at 58 with what I have radiotherapy etc not suitable- and that surgery is best.. they did say i could go on active surveillance for a bit if i had a template biopsy.. but sooner or late theyre saying surgery is needed and the window might close...

User
Posted 09 Dec 2021 at 17:40

Well I'm a bit surprised no kind of brachytherapy is on offer, but they have seen the scans not me. I can see a bit of an argument away from RT you have a life expectancy of about 25 years, can RT really hold the prostate cancer at bay for that long? I hope so as I had RT at 54.

I would give serious thought to active surveillance, it may only push treatment back a year, but it may turn out that your cancer sits dormant for years.

Dave

User
Posted 09 Dec 2021 at 22:15

Its really tough......but serious side effects are not a given. I had surgery 18 months ago and maybe I was lucky but life back to normal

User
Posted 10 Dec 2021 at 01:02

One thing to think about is that your outcomes from surgery are likely to be better at a younger age - recovery definitely slows as you get older.

User
Posted 10 Dec 2021 at 17:32
thanks for those..

so many unknowns, all a bit of gamble it seems to me. My main concern is living for years with nasty sode effects and there's no way of being sure about that is there, or knowing if it will spread or grumble along harmlessly for decades..

Will persue the other postings and see what people have to say about how it was for them!

User
Posted 10 Dec 2021 at 18:29
Personally I'd want to get it sorted out and gone as quickly as possible, but we're all different in that respect, of course. There's no doubt that radical treatment will be required at some point given your age.

Best wishes,

Chris

User
Posted 10 Dec 2021 at 19:10
Surgery is the most favoured treatment for younger men that are eligible.

Assuming you go with this, or indeed any type of treatment, it's a question of whether you want to give yourself the best opportunity of successful eradication of the cancer and encounter the possibility of side effects of unknown severity or defer treatment (AS) until it becomes more urgent to have treatment with the risk that you then have side effects that are more severe and the longer you leave it the more chance that the cancer may have advanced further than was thought. It's a tough decision and likely to depend on your attitude towards risk. Unfortunately, at present at least, it's not possible to predict outcomes. Also, cancer does not always advance in a steady way but can take off quite sharply in some men. In this connection, try not to be over influenced by the experiences of a few men whose experience and response to treatment and side effects may be very different to yours.

Barry
User
Posted 10 Dec 2021 at 20:12

Very eloquent and very helpful.

Thanks Barry

User
Posted 10 Dec 2021 at 20:14

i suppose that what seems uncertain, will radical treatment be needed> for many PC grumbles along without affecting their lives.. Will I be that guy? we just dont know..

 

D

User
Posted 10 Dec 2021 at 20:22
I'm no expert, but some on here have had less serious indications than yours, which have turned out to be worse after surgery has performed. I suspect that you are kidding yourself if you think that this may just rumble along without affecting your life.

Do you have the more detailed information about the biopsy and diagnosis?

User
Posted 11 Dec 2021 at 12:12

Takes a while for it all to sink in. I’m just over two year post Retzius sparing Robotic Assisted Radical Prostatectomy + NeuroSAFE. I’d do it again without hesitation as it was very timely and I’ve had a good outcome this far. Full continence very soon after the op and still got my mojo albeit with blanks.

For me I had Gleason 7 (3+4) post op histology which was upgraded from Gleason 6. I was told there was no rush and I could wait quite some time with active surveillance. I had a hunch it was the wrong thing to do as prostate cancer tend to 1) prefer anterior areas of prostate 2) be multifocal With this in mind I decided to move to surgery without delay. Histology showed my decision was very prudent as it was very close to breaking out of the prostate capsule 🥶

Please ask any questions if needed and please read about my journey if that helps.

cheers

Simon

User
Posted 15 Dec 2021 at 17:17

Thanks Simon,

 

Have agreed to the surgery and got my pre op 20th Jan.

Am losing weight and doing Plates but any other tips to help prepare for surgery and after much appreciated.

 

Dave

User
Posted 15 Dec 2021 at 18:37

Pleasure Dave.

It’s a hell of a journey but once you’re past the op it’s gets much easier. The pressure coming up to surgery quite immense but I kept it together by getting to the gym quite a bit (got my BMI down to 25 for surgery which is optimum according my surgeon) plus some martial arts light breathing and focusing exercises. Tai Chi basic stuff from YouTube would do it as it’s just trying to focus and stay calm. Pilates very good too as gets that core strength up.

have a look on my main surgery post as should be a shopping list of suggested stuff to get. I pre set my house so everything would be easy to access etc post surgery and made my bedding ready for any leaks etc. one of the best things I bought were double lined shell training trousers ( Canterbury of New Zealand) with a full length zip…made accessing and managing the catheter bag a breeze pretty much anywhere. 

A builders bucket for the night bag stand as helps support etc

media player for when in hospital as gets a bit boring as first night I was up awake mostly in between micro naps.

Plus we are all here if you have any questions….for me that was a massive help pre and post surgery.

try and have a blast over Christmas then come January we are here if you need.

simon

 

User
Posted 15 Dec 2021 at 20:28

Thanks Simon,

 

Could you point me in the direction of your surgery post that you mentioned> couldnt find it,,

 

cheers

 

Dave

User
Posted 15 Dec 2021 at 21:30
Not too long until your surgery but I'd suggest getting a solid month+ in of pelvic floor exercises to help with post-op urinary continence.
User
Posted 15 Dec 2021 at 21:46
User
Posted 16 Dec 2021 at 00:26
Agree with music_man, strengthen your pelvic floor. Start now - the NHS App, "Squeezy" is pretty good for reminding you.
User
Posted 19 Dec 2021 at 18:26
been moved up the queue- cancellation? so pre op is 31st Dec!

I'm being seen in Blackburn

Dave

User
Posted 19 Dec 2021 at 20:04

I know you’re not keen on getting the surgery. But honestly I think when it’s out of the way you’ll feel much better. My husband is 56 and the news came as a complete bolt out of the blue for us! It totally floored us and neither of us wanted him to get the op. We were in complete denial. But you the option if you do nothing looks pretty bleak. My OH had surgery at Christie’s in Manchester 11 days ago. He’s already much better and although we’ve got a long journey ahead of us, making the decision and having the op is now behind us and in my opinion that’s one of the hardest parts. We also got a last minute slot with one week’s notice which I know is a bit of a headf**k. But now glad it’s all done with. Wishing you the very best of luck. 

User
Posted 19 Dec 2021 at 21:14
Have you checked out your surgeons stats - https://www.baus.org.uk/patients/surgeons. I only ask as there is a general feeling that one wants a surgeon who does a lot of this type of operation.
User
Posted 20 Dec 2021 at 10:03

Well yes i totally agree- when asking about this however i have been told it is decided nearer the time and a question of who is available. I will ask again at the pre op meeting. Maybe this is easer to do with private care?

User
Posted 20 Dec 2021 at 10:39

Hi Dave

you are able to choose which Trust you want to be treated by and request a certain consultant…

https://www.nhs.uk/nhs-services/hospitals/about-nhs-hospital-services/#choice

So if you do your homework you should be able to get the surgeon you want on the NHS (or at least a very reputable and experienced urology team)

There are some high volume surgeons in the North West. My husband just had RARP with one of them.

Here is a list throughout the U.K. 

https://prostatematters.co.uk/prostate-cancer/where-to-access-robotic-prostatectomy/

User
Posted 20 Dec 2021 at 14:54

Originally Posted by: Online Community Member

Well yes i totally agree- when asking about this however i have been told it is decided nearer the time and a question of who is available. I will ask again at the pre op meeting. Maybe this is easer to do with private care?

This is very true D@ve - meeting and choosing a consultant urologist does not mean that you necessarily get them doing the actual op ... that is something that patients should ask. A big deal is made on this forum of how to choose a great consultant but in reality, those at the top of their field will often be supervising junior surgeons on the day. Paying for private care might make it less likely but for a couple of the really well known urologists in England, their data suggests that they are doing 3-4 RPs every day all year round which is clearly not possible - what they might be doing is supervising two ops in adjacent theatres at the same time.

We did pay to get the surgeon we wanted, and asked for a guarantee that he would actually be doing it. But I know of a member on here who paid for RP privately, chose his surgeon carefully and then on op day, was greeted by a different urologist with the news that the carefully selected one works in a team and wasn't on site that day.     

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

User
Posted 20 Dec 2021 at 15:09

After a biopsy on 24th November, I saw my consultant on 17th December and as I've gone from G3+3 to G3+4 he recommended action, preferably RP, with RT as a close second and AS as his least favoured option. He said they use two centres, both do high volumes of RALP, I could choose either, but wouldn't have a choice of who did it (there is a team of surgeons at both of them).

The last point agrees with what Lyn put, but I have seen several people saying you can choose your surgeon so I am a bit confused on that point.

User
Posted 20 Dec 2021 at 15:13
Thanks, that's helpful.

I did have an appointment to discuss with the 'top man'

waited 2 hours and didnt see him. I was told by the burses (unofficially) that he was great as a surgeon but not very good with people! I think also the reality of NHS functioning and COVID means real choice may be unrealistic.. I would be OK with an experienced person supervising i guess.

User
Posted 20 Dec 2021 at 20:34

Originally Posted by: Online Community Member

After a biopsy on 24th November, I saw my consultant on 17th December and as I've gone from G3+3 to G3+4 he recommended action, preferably RP, with RT as a close second and AS as his least favoured option. He said they use two centres, both do high volumes of RALP, I could choose either, but wouldn't have a choice of who did it (there is a team of surgeons at both of them).

The last point agrees with what Lyn put, but I have seen several people saying you can choose your surgeon so I am a bit confused on that point.

Under NHS choices you can choose a consultant / surgeon and go on their caseload (if they accept the referral) but being on their caseload doesn't provide a guarantee that they will provide your care. Each consultant has a hierarchy of variously qualified doctors working and training under them. 

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

User
Posted 29 Dec 2021 at 13:31

Hi dave

I have seen your post. 
my condition sounds similar to you and like you concerned over surgery options 

can I suggest you read my treatment option of IRE which is not undertaken in UK but may be an option you want to consider 

happy to chat to u 

paul 

User
Posted 29 Dec 2021 at 17:23
IRE is more often referred to as NanoKnife in the UK and is also available from at least 3 hospitals in England for patients who can pay.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Dec 2021 at 09:39

Thanks for that Paul-

I appreciate the info- in my case I wouldnt  be in a position to pay.

User
Posted 31 Dec 2021 at 10:42

Good luck today @Dave. I used to HATE people telling me "it will be all OK" because they weren't the ones facing - well, frankly, I was terrified throughout and in the end the anaesthetist put me down hard at my own request to forestall a panic attack - so I will NOT say it will all be OK but based on my experience (and per all the above comments about AS) you are taking the right, brave, course and you are tilting odds already strongly in your favour yet further so good luck today and hereafter and keep us posted.

Edited by member 31 Dec 2021 at 10:43  | Reason: Sentence was too short :-)

User
Posted 31 Dec 2021 at 10:57

Much appreciated!

Pre op today fairly straight forward.

ECH, bloods, urine, swabs for MRSA, lots of health questions.

 

When blood being taken was rather taken a back being called, "mean, stingy, difficult, unforthcoming"! all banter perhaps but maybe there's a better way to speak to a patient who has no control over whether the blood flows or not!

Suppose I should toughen up or something! 

Dave

User
Posted 31 Dec 2021 at 12:17

Great news Dave. I kept the nurses on their toes….they usually revel in the banter having dated one a few years back😵‍💫🤪

I had bloods also done just before op and the morning after too. Think it’s just routine but after a bit does get tiring being a pin cushion 🤷🏼‍♂️

Onwards and upwards! 🍻

Edited by member 31 Dec 2021 at 12:19  | Reason: Not specified

User
Posted 31 Dec 2021 at 12:26

Well if THAT's your strongest memory you're doing well. Mine - and I can't believe I am THAT much of an atypical wimp although maybe I am, having stalled for 5y which turned out to be too long but that's a whole separate thread - was that it was "first contact", with nerves to match. I must have been contagious because they missed the MRSA swab which led to all sorts of hoopla when I asked about it on admission. So again, I won't say "you'll be OK" but you're on track.

 
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