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Hello from a newly diagnosed

User
Posted 12 Mar 2025 at 21:07

Hi all,

Happy to have found you and a big thanks in advance for any help, advice, and to those volunteering in support of Prostate Cancer UK.

I have Chris Hoy to thank for me finally pulling on my big boy's pants, getting a PSA (4.8) at age 53, an MRI and a recent biopsy (3 weeks ago) to show a Gleeson 6 which I understand to be on the more positive end of bad news.

Waiting now for a Spec CT scan/bone scan to see what fun and games are to be found in a few MRI shadows in the pelvic bone area before next steps. Have been treated in the Cheltenham area, privately, via Vitality.

Philosophical and outwardly positive about the whole thing with the obvious private concerns about surgery etc. If anyone wants to be reassured about biopsy from a self-confessed scaredy cat, I am happy to put your mind at rest that it wasn't half as bad as I thought it would be, and I recovered quickly.

Looking forward (under the circumstances) to contributing in small ways to the discussion.

Best

Justin

User
Posted 14 Mar 2025 at 17:58

Chris Hoy is an inspiration to us all Justin, I realise it’s not the club you wanted to join but at least our membership fees are low🤣🤣🤣

I was a bit slow with your Nickname Adrian but I know the feeling….or perhaps lack of it….but it’s good you can laugh about it. Justin you’ve had your first laugh going through the Biopsy - I had a whole team from Ninewells watching mine as Fife are quite a forward thinking trust and were already using TPL biopsies. I’ve never had so many people looking up my arse before🤣🤣

Whatever you decide to do, I wish you all the best on your journey.

Derek

User
Posted 13 Mar 2025 at 08:36

Hi Justin, and welcome to the group.

You're certainly right about Gleason 6 being on the better end of the spectrum. Given your low PSA score, and a G6 diagnosis, they will almost certainly recommend going on active surveillance. If you can do this, then at your young age I think I would certainly do it. Surgery is a great option in terms of "getting rid" of the tumour(s), but it does come with certain after effects, namely incontinence and impotence. How long these last is a bit of a lottery, but it can be a long time (years) or even permanent in some cases.

As long as you make sure you are monitored closely, AS can be a great way of putting off radical treatment for a long time.

Good luck with whatever you choose mate, and keep us posted 👍

Ian.

User
Posted 13 Mar 2025 at 09:55

Hi Justin.

(It's what my wife has nicknamed my todger since my prostatectomy)

Joking apart, I'm sorry that you've got prostate problems and have had to join our club but welcome to the forum mate.

As Ian has said, you are a prime candidate for active surveillance. In the grand scheme of things, your PSA is relatively low and Gleason 6 (3+3) is a great result.

I'm glad that your biopsy was not too uncomfortable. Do you know how many cores were taken, how many lesions there were and where on the prostate they were located? Presumably they are confined to the prostate and you have a T2 staging?

I'm a big fan of active surveillance. It's on the increase.

https://www.cancer.gov/news-events/cancer-currents-blog/2022/prostate-cancer-active-surveillance-increasing

Please ensure that your active surveillance is active. That you have regular PSA checks and follow up MRIs. You may well be one of the lucky ones who's cancer is a pussy cat and that you'll not need any further treatment.

Best of luck, mate.👍

User
Posted 13 Mar 2025 at 11:42

Hi again mate.

I understand how you're feeling. Most of us were very anxious when first diagnosed. You hear the C word and it's frightening. You've then got to learn a lot of new jargon and try and decipher it. 

On the face of it, you'll will more than likely be offered active surveillance. 

Unfortunately, in my opinion, active surveillance doesn't really get a fair hearing on this forum. Because the forum has a bias towards treatment problems and poor outcomes, you'll hear, a lot of horror stories, including my own, about active surveillance failure; but you'll rarely see anyone posting how successful it is. Men with low grade, low volume, prostate confined disease who've  successfully been on active surveillance for years without disease progression, will not be on this site;  they've no need to, they'll be getting on with their lives virtually unscathed. Yes, there are risks involved, just as there are risks involved in all radical treatments. However, at least with active surveillance you are eliminating the risk of possible side effects of radical treatment. I often think, although individual stories do have merit, you're better off looking at the overall picture.  

Please keep us updated. 

 

Edited by member 13 Mar 2025 at 11:44  | Reason: Typo

User
Posted 13 Mar 2025 at 11:49
Hi Justin

Welcome to the club full of reluctant members.I am a newbie and had surgery 6 weeks ago.This is a great place to get some advice from some very knowledgeable people .As the previous guys have said you are probably an ideal candidate for surveillance.

Good luck for the future 👍

User
Posted 16 Mar 2025 at 22:12

Hi Justin,

My husband was diagnosed just over 2 years ago (aged 54) with Gleason 6 and he wasn’t offered active surveillance, but it wasn’t clear from the scan if it had broken through the capsule. Instead, he was given 3 months of HT followed by 20 rounds of RT. He wasnt able to carry on with HT due to a heart condition but he appears to have made a full recovery with very little side effects which is good. 

I hope everything goes well with the scans and keep using this forum for added support, I found it so helpful when my husband was diagnosed.

Wishing you all the best.

Nicola

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User
Posted 13 Mar 2025 at 08:36

Hi Justin, and welcome to the group.

You're certainly right about Gleason 6 being on the better end of the spectrum. Given your low PSA score, and a G6 diagnosis, they will almost certainly recommend going on active surveillance. If you can do this, then at your young age I think I would certainly do it. Surgery is a great option in terms of "getting rid" of the tumour(s), but it does come with certain after effects, namely incontinence and impotence. How long these last is a bit of a lottery, but it can be a long time (years) or even permanent in some cases.

As long as you make sure you are monitored closely, AS can be a great way of putting off radical treatment for a long time.

Good luck with whatever you choose mate, and keep us posted 👍

Ian.

User
Posted 13 Mar 2025 at 09:23
Thank you so much, Ian, for taking the time to reach out. Much appreciated.
User
Posted 13 Mar 2025 at 09:55

Hi Justin.

(It's what my wife has nicknamed my todger since my prostatectomy)

Joking apart, I'm sorry that you've got prostate problems and have had to join our club but welcome to the forum mate.

As Ian has said, you are a prime candidate for active surveillance. In the grand scheme of things, your PSA is relatively low and Gleason 6 (3+3) is a great result.

I'm glad that your biopsy was not too uncomfortable. Do you know how many cores were taken, how many lesions there were and where on the prostate they were located? Presumably they are confined to the prostate and you have a T2 staging?

I'm a big fan of active surveillance. It's on the increase.

https://www.cancer.gov/news-events/cancer-currents-blog/2022/prostate-cancer-active-surveillance-increasing

Please ensure that your active surveillance is active. That you have regular PSA checks and follow up MRIs. You may well be one of the lucky ones who's cancer is a pussy cat and that you'll not need any further treatment.

Best of luck, mate.👍

User
Posted 13 Mar 2025 at 10:43
Thanks so much, Adrian! and for making me chuckle.

I didn't take away the exact details following the consultation recently but have now requested them. I've seen your very helpful encouragements in the posts I've read so far - it's a bit overwhelming and a rabbit hole to begin with, isn't it?

Cheers

Justin

User
Posted 13 Mar 2025 at 11:42

Hi again mate.

I understand how you're feeling. Most of us were very anxious when first diagnosed. You hear the C word and it's frightening. You've then got to learn a lot of new jargon and try and decipher it. 

On the face of it, you'll will more than likely be offered active surveillance. 

Unfortunately, in my opinion, active surveillance doesn't really get a fair hearing on this forum. Because the forum has a bias towards treatment problems and poor outcomes, you'll hear, a lot of horror stories, including my own, about active surveillance failure; but you'll rarely see anyone posting how successful it is. Men with low grade, low volume, prostate confined disease who've  successfully been on active surveillance for years without disease progression, will not be on this site;  they've no need to, they'll be getting on with their lives virtually unscathed. Yes, there are risks involved, just as there are risks involved in all radical treatments. However, at least with active surveillance you are eliminating the risk of possible side effects of radical treatment. I often think, although individual stories do have merit, you're better off looking at the overall picture.  

Please keep us updated. 

 

Edited by member 13 Mar 2025 at 11:44  | Reason: Typo

User
Posted 13 Mar 2025 at 11:49
Hi Justin

Welcome to the club full of reluctant members.I am a newbie and had surgery 6 weeks ago.This is a great place to get some advice from some very knowledgeable people .As the previous guys have said you are probably an ideal candidate for surveillance.

Good luck for the future 👍

User
Posted 14 Mar 2025 at 07:35
Thanks for the replies, Sammie and Adrian :)
User
Posted 14 Mar 2025 at 17:58

Chris Hoy is an inspiration to us all Justin, I realise it’s not the club you wanted to join but at least our membership fees are low🤣🤣🤣

I was a bit slow with your Nickname Adrian but I know the feeling….or perhaps lack of it….but it’s good you can laugh about it. Justin you’ve had your first laugh going through the Biopsy - I had a whole team from Ninewells watching mine as Fife are quite a forward thinking trust and were already using TPL biopsies. I’ve never had so many people looking up my arse before🤣🤣

Whatever you decide to do, I wish you all the best on your journey.

Derek

User
Posted 15 Mar 2025 at 11:27
Thanks Derek! You made me laugh :)
User
Posted 16 Mar 2025 at 22:12

Hi Justin,

My husband was diagnosed just over 2 years ago (aged 54) with Gleason 6 and he wasn’t offered active surveillance, but it wasn’t clear from the scan if it had broken through the capsule. Instead, he was given 3 months of HT followed by 20 rounds of RT. He wasnt able to carry on with HT due to a heart condition but he appears to have made a full recovery with very little side effects which is good. 

I hope everything goes well with the scans and keep using this forum for added support, I found it so helpful when my husband was diagnosed.

Wishing you all the best.

Nicola

User
Posted 17 Mar 2025 at 14:30

Thank you so much, Nicola, for reaching out and letting me know - best wishes to you both ☺️

 
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