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User

Posted 30 Oct 2024 at 16:05

Hello

My name is Gus, and new to the group having been diagnosed yesterday. Worried about the future/options and would welcome some advice from anyone that can help..

I’m a 55-yr old, weight train and run regularly, play fair bit of golf, and have been a pescatarian for years. I thought I was doing most things sensibly, never smoked, occasionally have drink but not often, not overweight, and though my diet is far from perfect I do make attempts to eat well. I had no symptoms, went for a general health check up, the PSA came back as 5.2 ( a subsequent one 6 weeks later was 4.7) This diagnosis has knocked me for 6 tbh as Im sure it does to everyone on here ☹

I have been told I have a Grade group 2 adenocarcinoma, T2c, 13 of 25 cores involved, left and right anterior sectors and midline sectors not involved, other sectors all involved.

As I understand it there is too much disease for focal therapies. It’s been suggested to me that a bilateral nerve sparing RP would be my best option, radiotherapy as EBRT or Brachytherapy are options too, but surgery has been suggested as my best option. I have a 17mm membranous urethral length (?!) and an intact bladder neck.

I’ve been looking at the surgery option and brachytherapy and the brachytherapy seems to have a lot less initial risk as the surgery as it is not overly invasive, and the recovery seems an awful lot more straightforward than surgery. Do they have similar long-term prognosis, or is that too broad a question as I’m sure every case is unique? I am sure there are pros and cons to both but wondered if anyone had a similar story and was a few chapters further down the road than me. Any thoughts/advise would be very gratefully received.

Thank you

User

Posted 15 Nov 2024 at 13:10

Hey Gus,

I've only just seen there's "Younger Men" group - I'm 49 but didn't consider I'd qualify for this group until I spotted Adrian's reply just now, if I'm honest!

So it sounds like our decision pathways have been incredibly similar... My diagnosis of Gleason 7 (3+4) was in Feb/March 2024 then I had about 6 months of talking to all sorts of consultants to conclude that surgery would be my most suitable poison too (nicely put there). I'm about 2 weeks ahead of you - having had the single port RP up at Guys 3 days ago. I’m now home and doing a lot better than I thought I might be. A 3 inch incision across my tummy and another smaller one but all looking to be healing well. Catheter is awkward and uncomfortable but handleable. Focussing now on Wednesday, when that comes out. Sleeping is tricky but possible. Pain management is fine. I'm able to potter about the house already. It’s all about recovery now - and not getting constipated or infected. But it’s only a week like this and then I should be free of the wee bag with any luck!

Hopefully that's not too much information for everyone? I would have appreciated it myself as it helps to know what you are in for ;)

So short-term outcomes have been as expected really. Longer term ones, we'll have to see. Everyone will be different but I think it helps to share for others going through the difficult decisions.

And to re-iterate others saying the same thing - I found the decision process the most exhausting mentally. Once I'd decided, getting into good shape for the op was a good focus and a much easier period of time.

All the best of luck, Gus, for your surgery and recovery (I'd be happy to chat more if you want to pm). And to others on similar journeys.

Cheers,

Mark

User

Posted 30 Oct 2024 at 21:47

Hi,

I don't know a lot about Brachytherapy but one person on here had it coupled with standard RT I think. He runs a group on the subject linked below.

https://tacklegroups.org.uk/site-28/

His name is Andy62. If you can find him on here He writes quite a lot here's his profile.

https://community.prostatecanceruk.org/default.aspx?g=profile&u=37293

Your psa is fairly low and Group 2 or Gleason 3+4 is one of the lower ones.

It's unusual that they recommended something. Age may be a factor but I guess it depends on your own preferences. I might be wrong but I'd think sexual function has a worse probability of outcome with surgery. Although with RT the effect can come on years later. It's all about probability things might or might not. All the best Peter

Edited by member 30 Oct 2024 at 21:55 | Reason: Not specified

User

Posted 01 Nov 2024 at 14:29

Hi Gus,

I found the Brachytherapy operation a lot easier than i expected ,I was dropped off on a Sunday and apart from them mislaying my notes it was all good had pre meds then wheeled over to the theatre spoke to team a small prick in back of my hand and i remember no more till the recovery room a cup of tea and back the the side ward i was i because of the radioactive seed implant . Had a couple of pain killers but had no great discomfort just hungry .

Had good night cup of tea from duty night nurse at 4.0clock great service. I was give bottles to pee in and told i could go home next day if i could fill them, i done 16 and they where all left on the windowsill to be checked for lost seeds.All good sent home walked to car and daughter took me home. Walked like John Wayne for a while but not bowel problems ,had to pee every couple of hours . If you click on my Avatar you can see more put need to scroll down a bit because of my bad key board spacing.

Psa dropped over the next 8 years ,ED of course and given 4 Viagra a month and morning erections came back after a couple of years but not great , may being 78 does not help.

If i can help with any other question please ask, i log in every day just incase i can help anybody.

Regards John.

Edited by member 01 Nov 2024 at 14:32 | Reason: Not specified

User

Posted 03 Nov 2024 at 17:38

Hi Gus,

You seem to be quite similar to me diagnosis-wise.

I got my diagnosis and left it a couple of months to collect my thoughts and do some research. During that time I decided that I didn’t want to stay on AS.

I read some info that T2c was kind of borderline for AS and as I have a strong family history, I was only delaying the inevitable by remaining on it, plus my outcome would probably be better for having treatment younger.

I spoke to both surgeon and oncologist (who offered brachytherapy) and the consensus was that surgery was probably the best option as I could then have Salvage RT if there was any recurrence.

I found a local prostate cancer support group that really helped as there were people that I could talk to that had been through the various treatments, and have also had some excellent support from MacMillan, so would recommend accessing those if you have it locally.

Best of luck

User

Posted 04 Nov 2024 at 19:21

Hi Gus,

Ive been a bit quiet on here the last couple of weeks as I’ve had other things to deal with. Sorry you’ve joined the club but with your diagnosis you’ve got a very good chance of cure so try and focus on that. I don’t know what type of RT is available in your area but there is a new treatment of 5 sessions of High Dose RT and NO HT. For me, and many others the RT was a breeze, the HT on the other hand has been tough and you could be on it up to 3 years. I think it makes the choice much less clear if this treatment IS available.

Good luck with your decision and treatment.

Derek

User

Posted 14 Nov 2024 at 19:31

Hi Gus,

Ive been on here for the best part of 3 years and the phrase "Choosing your poision"is probably the most succinct ive heard.

Wishing you the warmest my friend and look forward to reading all about your recovery.

Slainte

Jamie.

User

Posted 14 Nov 2024 at 21:16

Hi Gus,

im sorry i don't know your age, but i was diagnosed in 2017 and on active surveillance up until July this year when things got worse and i had to make the big decision. I chose robotic surgery and had it removed just under 4 weeks ago, staples and catheter removed after 10 days and with the exception of a UTI i feel great. Im 51 so have been diagnosed since i was 44! Feel free to ask any questions

User

Posted 14 Nov 2024 at 22:43

Good luck with your surgery and recovery, I’m waiting for a surgery date for January and so it’s good to hear everybody’s experiences and hope we can all help each other along this journey. I found that choosing the path for treatment was mentally exhausting, but I feel much better now since I decided a few weeks ago. Now you can concentrate on getting prepared for surgery and the recovery period.

Keep us posted

User

Posted 15 Nov 2024 at 05:33

Most of you lads who've contributed to this converstion are alot younger than most of us old fogies. I wish you all the very best with your respective treatment plans. Good luck to you all.👍

User

Posted 15 Nov 2024 at 21:12

Hey Matthew,

You address Gus in your reply (who started the original post) but I think your question is to me…(?)

Anyway, it was a six week turnaround from decision to getting a surgery slot. I’m doing this the private route as covered by insurance, so I appreciate it might not be so quick if not going that route. I have to admit that probably afforded me some extra time to speak with several consultants over the last six months (I was diagnosed March 2024) - as I was told they’d be able to fit me in with that kind of lead time (6-8 weeks).

The catheter is awkward but it’s only a few days - and seems to be getting less uncomfortable as things progress. I’m not relishing the removal day but hey.

Good luck with your op! In terms of prepping, I found it a great focus to get in good shape and do all the pelvic floors I could ;)

cheers,

Mark

ps - to Gus, I’ve seen your pm but the platform won’t let me reply until I post more messages publicly. Sorry about that! Bear with me :)

User

Posted 11 Dec 2024 at 19:22

Good luck for tomorrow Gus,

You'll feel a whole lot better once the catheter is out.

Kev.

User

Posted 11 Dec 2024 at 19:55

Best of luck Gus when that catheter comes out you feel a whole lot better.

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User

Posted 30 Oct 2024 at 17:12

Hi Gus.

I'm sorry that you've had to join the Club, but welcome to the forum, mate.

Your question about which radical treatment is best is virtually impossible to answer. When you look at the outcomes of thousands of people who've had various treatments they are very much similar. However individuals outcomes to specific treatments can vary enormously, if you see what I mean?

All I can advise is, whatever treatment you select don't regret the decision you make.

I wish you all the best, mate.

User

Posted 30 Oct 2024 at 17:35

Thanks for reaching out Adrian.

User

Posted 30 Oct 2024 at 18:11

I was 52 when diagnosed. T2a 3+4. Was given a choice including focal, but given my age they strongly suggested the best long term outcome was surgery. Often they leave it up to you to decide but I just put my trust in the surgical teams push in the surgery direction. You should get an appointment with oncology to discuss RT.

User

Posted 30 Oct 2024 at 19:11

Thanks Jim. I hope you have been happy with your outcome post surgery. I've got a call with my surgeon on Frday after voicing some concerns, I will try ask to speak with oncology too.

User

Posted 30 Oct 2024 at 21:47

Hi,

I don't know a lot about Brachytherapy but one person on here had it coupled with standard RT I think. He runs a group on the subject linked below.

https://tacklegroups.org.uk/site-28/

His name is Andy62. If you can find him on here He writes quite a lot here's his profile.

https://community.prostatecanceruk.org/default.aspx?g=profile&u=37293

Your psa is fairly low and Group 2 or Gleason 3+4 is one of the lower ones.

Edited by member 30 Oct 2024 at 21:55 | Reason: Not specified

User

Posted 30 Oct 2024 at 22:51

Sorry to hear your in the club but from the sounds of it don't be too disheartened . Plenty of advice on here to scroll through. As one of the a younger men diagnosed I would look into RT if sexual function is important as RP appears to be hit and miss if you regain any function but on the other side might give you a better chance of getting it all. I think the chance of returning is around 25-30% for both RT and RP. Nerve sparing I believe is tricky. RT will dry up your sperm and you get dry ejaculations. I had RT and hormone injections , I'm a year in to the first of 3 years recommended of HT but still get the odd morning glory and can still get going if but for a short time. Some with a low grade like yours you might not have the hormone treatment for a long time so you may recover function sooner. Mine was T3a 4-3and 3-4 NoMo with high Psa in the 30's but like you with no symptoms . So yes it's a shocker and I'm 56 so not something I did not even think about. Just get all the info on all the treatments and Its your life and decision in the end just go with what you choose and don't look back.

User

Posted 31 Oct 2024 at 14:05

Thanks guys

User

Posted 01 Nov 2024 at 13:43

Hi.

I would be very careful and study the options you have and read up on all the options.Very often the Specialist you speak to will recommend their procedure as the best option and this happened with me in 2016 at my local hospital . The specialist i spoke to first explained they had the best Robotic system and he thought i would sign up straight away and seemed surprised when i ask to speak to a Brachytherapy specialist that was luckily at the hospital at the same time.

I spoke to the Brachytherapy specialist next and looking at my notes said there was no reason the Brachytherapy would not be a good choice , but i would have to travel to his hospital the Mount Vernon about 20 miles away. I took the Brachytherapy route.

I had PSA 2.19 Gleason 3+4=7 T2 no mo. bath the age of 70,I am 8 years on and believe i had a very good result. Psa >01.

John.

User

Posted 01 Nov 2024 at 14:08

Thanks for the message John, that's great that you have had a good result and your psa is where it is now. Would you be happy to share more about what your good result looked like? Did you suffer many of the post op symptoms you they talk about?

Thanks Gus

User

Posted 01 Nov 2024 at 14:29

Hi Gus,

Psa dropped over the next 8 years ,ED of course and given 4 Viagra a month and morning erections came back after a couple of years but not great , may being 78 does not help.

If i can help with any other question please ask, i log in every day just incase i can help anybody.

Regards John.

Edited by member 01 Nov 2024 at 14:32 | Reason: Not specified

User

Posted 03 Nov 2024 at 17:38

Hi Gus,

You seem to be quite similar to me diagnosis-wise.

I got my diagnosis and left it a couple of months to collect my thoughts and do some research. During that time I decided that I didn’t want to stay on AS.

Best of luck

User

Posted 04 Nov 2024 at 19:21

Hi Gus,

Good luck with your decision and treatment.

Derek

User

Posted 14 Nov 2024 at 13:07

I thought I’d update you on my experiences so far, hopefully it'll help someone.

I have seen or spoken to consultants, professors and oncologists in Brighton, Southampton, Guildford, and London. Except for one professor who has strongly advised to have surgery, everyone else has said there are different options, that will likely have a similar outcome but with different journeys and side effects. They have a preference for their fields of expertise as you'd expect. Initially I was keen on the idea of Brachytherapy as that looked a lot less invasive than surgery and with very similar mid/long term outcomes. However, the specialist oncologist said she thought I should have 6 months of hormone therapy, 3 months pre brachy and 3 months post brachy, and after looking into HT I really didn’t like the idea of the side effects. Plus waiting a further 3 months after 3 months of trial and tribulations with getting diagnosed and getting to this point, I am not sure my mental health would be able to cope with the HT side effects and the waiting… So, in 2 weeks I am having a NSRP that with be with the single port Da Vinci Robot, Retzius sparing and with the Neuro safe procedure too…I am not delighted that I must have surgery but what I have learned with my 3+4 T2c is that it’s probably my best option. Non of the treatments sounds great, and as one of the professors said to me 'it's a case of choosing your posion'.

Like us all I hoped of course it wasn’t cancer, then I hoped it would be no worse than a 3+3 so we could possibly watch and wait, then I hoped if that wasn’t an option then focal therapy would be possible… All those have been ruled out and the brachy with 6 months HT seems a worse option than the surgery now. So, I finally have a treatment plan. I have found the process of trying to find the most suitable treatment mentally exhausting tbh… I’ve been told that its ‘lucky’ to have options as many others don’t have that opportunity, I appreciate that, and I hope I can look back on that and agree. I haven’t felt particularly lucky with any of it if I’m honest! I’ll post what I experience with the surgery and then post op experiences too so hopefully they’ll help someone on a similar path. Thanks for your thoughts and comments guys.

User

Posted 14 Nov 2024 at 19:31

Hi Gus,

Ive been on here for the best part of 3 years and the phrase "Choosing your poision"is probably the most succinct ive heard.

Wishing you the warmest my friend and look forward to reading all about your recovery.

Slainte

Jamie.

User

Posted 14 Nov 2024 at 21:16

Hi Gus,

User

Posted 14 Nov 2024 at 21:51

Thanks, appreciate the support. Im 55

Wow that was a decent run on AS...Probabaly being dramatic but I think having to have a catheter for 10 days scares me more than the procedure...Good luck with your recovery. :)

User

Posted 14 Nov 2024 at 22:43

Keep us posted

User

Posted 15 Nov 2024 at 05:33

Most of you lads who've contributed to this converstion are alot younger than most of us old fogies. I wish you all the very best with your respective treatment plans. Good luck to you all.👍

User

Posted 15 Nov 2024 at 13:10

Hey Gus,

I've only just seen there's "Younger Men" group - I'm 49 but didn't consider I'd qualify for this group until I spotted Adrian's reply just now, if I'm honest!

Hopefully that's not too much information for everyone? I would have appreciated it myself as it helps to know what you are in for ;)

So short-term outcomes have been as expected really. Longer term ones, we'll have to see. Everyone will be different but I think it helps to share for others going through the difficult decisions.

All the best of luck, Gus, for your surgery and recovery (I'd be happy to chat more if you want to pm). And to others on similar journeys.

Cheers,

Mark

User

Posted 15 Nov 2024 at 19:19

Originally Posted by: Online Community Member

Hey Gus,

I've only just seen there's "Younger Men" group - I'm 49 but didn't consider I'd qualify for this group until I spotted Adrian's reply just now, if I'm honest!

Hopefully that's not too much information for everyone? I would have appreciated it myself as it helps to know what you are in for ;)

So short-term outcomes have been as expected really. Longer term ones, we'll have to see. Everyone will be different but I think it helps to share for others going through the difficult decisions.

All the best of luck, Gus, for your surgery and recovery (I'd be happy to chat more if you want to pm). And to others on similar journeys.

Cheers,

Mark

Hi Gus,

Your journey seems very similar to mine. I am currently awaiting my surgery, which will hopefully be in December. I’ll be having the standard Da Vinci as single port doesn’t seem to be an option where I am.

Good to hear your thoughts on how the surgery went and recovery so far. How long did you wait from deciding on surgery to having it done?

Weirdly the catheter is my biggest worry, but before that it was the biopsy which wasn’t as bad as I thought it would be, so I’m trying to apply that ethos to my worries about surgery!

Thanks,

Matthew

User

Posted 15 Nov 2024 at 21:12

Hey Matthew,

You address Gus in your reply (who started the original post) but I think your question is to me…(?)

The catheter is awkward but it’s only a few days - and seems to be getting less uncomfortable as things progress. I’m not relishing the removal day but hey.

Good luck with your op! In terms of prepping, I found it a great focus to get in good shape and do all the pelvic floors I could ;)

cheers,

Mark

ps - to Gus, I’ve seen your pm but the platform won’t let me reply until I post more messages publicly. Sorry about that! Bear with me :)

User

Posted 03 Dec 2024 at 19:09

Had my RARP surgery on Thursday afternoon.

Surgery went ok but had a PSM of 10mm at the right-side base after the Neurosafe frozen section procedure, which was a bit of a blow. The prof went back in and took 50% of my right side NVB as a precaution to ensure disease control. The left side had a clear NSM, so all is not lost, but that knocked me a bit tbh, I was not really thinking about not curing the cancer as I was 3+4, T2c, last PSA 4.7 with no sign of EPE. Every prof, consultant, and oncologist I had seen told me it was contained within the prostate but now I have been catastrophising a bit about reoccurrence after such a large PSM.
Post op not feeling too bad. The catheter, though not something you would ever choose is manageable, 9 days to go and counting. Feeling tired in the afternoons, but again nothing unmanageable. The single incision looks to be healing nicely.
I have asked the prof for a follow up call as I cannot really recall much of the conversation we had on the Friday morning after surgery, it was generally positive I think even with the resection after the PSM, but after a little reassurance as it’s a few weeks until the final pathology report and longer again for the first PSA.

If this can help anyone or if anyone has any questions I can try and help with let me know.

Cheers

Gus

User

Posted 05 Dec 2024 at 14:02

Something I thought I'd share; it won't be everyone’s cup of tea, but I have found it hugely helpful. I subscribe to Chat GPT4o, and I started to use it for help/advise/information about PCa and all the different pathways etc we can take. It gave me very good (and I now know accurate) advice, and even a little counselling when I was flapping a bit... like I said it won't be for everyone, and you need to get everything verified but it has certainly helped me enormously.

User

Posted 11 Dec 2024 at 18:04

An update - Catheter comes out tommorrow which will be a relief, but it feels a little like out of the frying pan into the fire with the fear and uncertainty around what level of incontinence I will have to deal with....Recovery so far 13 days post op has gone well, no issues really. I feel well, the only thing stopping me walking a lot more each day was the catheter, as it would become pretty uncomfortable after about 30 mins.

Like I (and all of us in the forum I'd imagine when going through our diagnosis and treatment) have done many times over the last few months I will be approaching tomorrow with a little fear, some anxiety, and hoping for the best.

User

Posted 11 Dec 2024 at 19:22

Good luck for tomorrow Gus,

You'll feel a whole lot better once the catheter is out.

Kev.

User

Posted 11 Dec 2024 at 19:55

Best of luck Gus when that catheter comes out you feel a whole lot better.

User

Posted 12 Dec 2024 at 22:49

Hi Gus,

Good to read your update. My surgery is scheduled for 23rd December!

Were you in just the one night?

Also, do you know of a list of useful things posted on here somewhere? I read that a bucket was a good thing, but was hoping someone might have put it all in one place.

Hope the catheter removal went okay…👍🏼

User

Posted 13 Dec 2024 at 19:15

Hi Gus,

Your Journey sounds similar to mine and i had my op around the same time as you.
I'm now 2 weeks after surgery and the best thing was to have that catheter removed.
The pain and uncomfortableness of that was getting unbearable.

I'm pretty continent now apart from the odd occasional leak.

Not sure about the ED as of yet and the sildifinel gives me headache!
I plan to go back to work on Monday and waiting for my follow up and PSA in January.

Hope your journey continues smoothly

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