Help just diagnosed

Help just diagnosed

User

Posted 08 Jul 2025 at 21:05

Hi All, this is out of character for me to reach out but unfortunately I feel I need to, due to being told today at the age of 45 with no symptoms and a psa of 2.51 that I have the very early stage of prostrate cancer. I can’t provide you with any details of my biopsy results as my consultant rang me out of the blue today as he is due to go away for two weeks. He has told me that it is a low risk cancer and has not spread, and he would recommend active monitoring. This feels a bit to much to take in at the moment especially as I won’t be able to have a face to face conversation with my consultant for a few weeks. I fully appreciate I am not the worst case on here but would love to know how people initially coped during the early days, especially when I have a young family to think of. Thanks in advance.

User

Posted 08 Jul 2025 at 23:14

Hi Dave

I’m so sorry that you’ve been diagnosed and had to join us all. It is certainly a shock in the early stages and consumes most of your mental capacity for the first few months, but as Adrian has said once you have had the chance to discuss things further and decided on a treatment path then you will feel better. It’s also tough with a young family, it does though reinforce how important it is to spend time with them and to enjoy life. I was diagnosed last year at 43 and with two young boys, 7 & 5, it was tough in the early stages but I found this forum a massive help to rationalise the situation. I also decided after a few weeks to tell close friends and family and their support also helped.

Feel free to ask questions, there is lots of people on here willing to offer their support, advice and experiences.

All the best

User

Posted 08 Jul 2025 at 22:44

Hi Dave.

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

You've got a low PSA, if it's low risk it will probably be Gleason 6 (3+3), and the cancer staging is probably T2 (confined to the prostate)

Here's a video of an expert talking about this grade of cancer.

https://youtu.be/a0sjUallZQU?si=lMLdMJ3PxV5GA_uX

You're a bit younger than most of us old codgers but no matter what age most of us are scared when first diagnosed. Once you've had tests and you're given a treatment plan, things become a bit easier.

Here's another excellent video produced by North Central London Cancer Alliance for patients who have just been diagnosed.

https://youtu.be/zYTU94-8pTc?si=1Z29_l8rbTwF6DHl

I'm a big fan of active surveillance, even though it failed for me and I ended up having surgery.

Here's a link to AS

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

You are in no rush. Keep us updated, please. You'll get a lot of help and support here.

Good luck mate.👍

Edited by member 08 Jul 2025 at 23:35 | Reason: Add link

User

Posted 09 Jul 2025 at 09:23

Hi again Dave.

I don't know the age of your children, but I wouldn't tell them anything yet, because you don't know the extent of the disease. You don't know what, if any, treatment, you will need.

My kids were in their forties when I was diagnosed so there is no comparison to your younger children. However, my two grandkids were only 7 and 4 at the time. I'm very close to them and probably as much time with them as I did with my own kids at their age, because I no longer have any work commitments.

We decided not to tell them anything, it would have upset them too much. During cancer treatment I ended up in hospital for a couple of weeks following a heart attack. Likewise we didn't tell them all the facts, just that I had tummy problems.

Please don't be offended by this but you might be thinking a bit too deeply at the moment. Wait and see what your consultant says. People get terrified when they hear the word cancer, but more often than not it isn't the monster it portrayed. It a disease, like any other, that may or may not need treating.

The reason I posted all those links was not to bombard you with confusing facts but to reassure you that the disease can come in many forms and there are many ways to deal with it. If you can mate, sit down for an hour and view the videos, they may put your mind at rest a little. They will also make it easier to understand things your consultant tells you at your appointment.

Good luck, mate.👍

Edited by member 09 Jul 2025 at 09:36 | Reason: Additional text

User

Posted 09 Jul 2025 at 14:49

Assuming you have been diagnosed with Gleason 6, 2.51 is a fairly low PSA and within the realms of a normal PSA (<3). I was diagnosed in March at 57 years old after a biopsy with a PSA of 1.47 (Gleason 6) , I had no symptoms and was only picked up by a Bupa medical in December 2024 that triggered a Bupa MRI and then back to the NHS for biopsy. I was put on active surveillance after it was agreed unanimously by the MDT.

I too struggled badly with the suggestion of Active Surveillance and thought immediate treatment would have been much better. It's the mental struggle that can be the toughest to get over, as you've been told you cancer, even if it it's low grade and may not ever change and it feels like AS is sweeping the problem under the carpet.

After talking to PCUK/Macmillan/urology nurses and joining PCUK's active surveillance monthly Zoom meeting (2nd Tuesday each month), I have eventually realized it is the best way forward for me currently as it meant I didn't have the side effects associated with more radical treatments and it may be a long time before I need any treatment (or hopefully never), but at least I'm being regularly checked. I also started taking D3/K2 tablets daily which was recommended by some people on the PCUK Zoom meeting and my six month PSA dropped from 1.47 to 1.40 so re-enforced to me that AS IS the best treatment for me at the moment.

Wishing you well on your journey, it's one none of us to start on...

User

Posted 09 Jul 2025 at 15:37

Dedward,

I hope AS goes well for you, mate. It generally gets bad press on here, because those who find it successful get on with their lives and we never hear from them again. We only hear from those who it has failed.

There was a post from a bloke on here the other day, who'd been on AS for 10 years with no.problems.

Good luck, mate.👍

User

Posted 29 Jul 2025 at 10:45

Hi again Dave.

I'm fairly laid back and didn't struggle with AS. I was unlucky and eventually had surgery but AS still gave me nearly two years of being free of the side effects the op has left me with.

There was a bloke on here who posted on here recently, that he was on year 8 of AS, and has needed no further treatment. As I said before, most fellas who are finding AS successful won't be on this forum, they'll have no need to be.

Of course, you like most of us will get a bit of PSA anxiety. But, you still get that after radical treatment, checking that it hasn't come back. 🙂

Please keep us posted on how you get on.

Good luck, mate 👍

User

Posted 30 Jul 2025 at 06:44

Thanks for taking the time to respond, my Gleason score is 3+3 with a psa of 2.1, so all things considered a pretty good outcome.
My consultant has tried his best to inform me of the positive’s of this situation and there is no need to panic and make decisions at this point hence the A/S route for now. I have my first blood tests in October and I’m sure once I have the results and get use to that situation my mind should start to settle down.

I find the whole thing very odd as I have no symptoms but have this thing inside me that I have no control over, as I said to my friend it’s not like a muscle strain or a broken arm, there’s not a lot I can do to help apart from be fit and healthy and try to keep a positive mind set.

Take care all and thanks for the advice.

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User

Posted 08 Jul 2025 at 22:44

Hi Dave.

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

You've got a low PSA, if it's low risk it will probably be Gleason 6 (3+3), and the cancer staging is probably T2 (confined to the prostate)

Here's a video of an expert talking about this grade of cancer.

https://youtu.be/a0sjUallZQU?si=lMLdMJ3PxV5GA_uX

Here's another excellent video produced by North Central London Cancer Alliance for patients who have just been diagnosed.

https://youtu.be/zYTU94-8pTc?si=1Z29_l8rbTwF6DHl

I'm a big fan of active surveillance, even though it failed for me and I ended up having surgery.

Here's a link to AS

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

You are in no rush. Keep us updated, please. You'll get a lot of help and support here.

Good luck mate.👍

Edited by member 08 Jul 2025 at 23:35 | Reason: Add link

User

Posted 08 Jul 2025 at 23:14

Hi Dave

Feel free to ask questions, there is lots of people on here willing to offer their support, advice and experiences.

All the best

User

Posted 09 Jul 2025 at 05:43

Guys, thanks for taking the time to respond so quickly and I will have a look at the links attached.

As I have to wait now for my appointment on the 21st to get all the information from my consultant, I was wondering how people initially went about telling there children, as this is my biggest hurdle and killing me just not knowing what to say.

To put this into context a bit, 3 years ago I had another health issue and was told by a consultant to go home and tell my kids that daddy was ill and may not make it past 3 months, I’ve never felt so lonely and lost when talking to the two people I love the most and I am scared to do it again, so any advice or experiences would be welcome.

Thanks

User

Posted 09 Jul 2025 at 09:23

Hi again Dave.

I don't know the age of your children, but I wouldn't tell them anything yet, because you don't know the extent of the disease. You don't know what, if any, treatment, you will need.

Good luck, mate.👍

Edited by member 09 Jul 2025 at 09:36 | Reason: Additional text

User

Posted 09 Jul 2025 at 14:49

Wishing you well on your journey, it's one none of us to start on...

User

Posted 09 Jul 2025 at 15:37

Dedward,

There was a post from a bloke on here the other day, who'd been on AS for 10 years with no.problems.

Good luck, mate.👍

User

Posted 09 Jul 2025 at 16:19

Hi Dave,

Welcome to the club that nobody wants to join….but at least it’s free and you get some great advice, and I see you already have had some from our active and knowledgable members.

I wouldn’t tell your kids anything until you know exactly what’s what…and if it’s active monitoring why worry them with this as you may be on Active Surveillance for a VERY long time. Kids now have enough to deal with.

this is the worst time for everyone…just been diagnosed and not knowing what’s ahead…but it does get easier. It’s a shame this has happened just as your consultant is going on holiday😩 have you been assigned a CNS? If so why not give them a call? Or call the Specialist nurses on here who are fantastic.

in the meantime, while your waiting, keep yourself busy and active, do lots of nice things with the family, be kind to yourself, give yourself lots of treats. It won’t stop you worrying but helps to keep your mind from wandering.

All the best,

Derek

User

Posted 09 Jul 2025 at 17:04

Thanks for the message, unfortunately I’ve got no one to contact as yet due to the consultant going away, hopefully this will change when he comes back.

I will take on the advice from all the replies and try to stay positive until I know more information.

Thanks again.

User

Posted 09 Jul 2025 at 19:37

Dave , If you want to talk to someone,why not call one of the nurses on this site the number is at the top of the page. They aren't just there to answer technical questions they are great listeners. I found it easier to talk to complete strangers rather than close family.

Thanks Chris.

Edited by member 09 Jul 2025 at 19:38 | Reason: Missed words

User

Posted 10 Jul 2025 at 14:05

Hi Dave

I’m sorry to hear that you’ve previously had a serious health problem and hope that’s all ok now.

We haven’t ever told our children that I was being treated for Prostate Cancer, we feel that they’re far too young to be worrying/thinking about this. On the morning of the RALP we did tell them that I was having to go into hospital to have my prostate removed just to keep me healthy, thankfully they didn’t question this! When I came home they were very sweet and caring, but soon got back to playing their games and charging around! We wanted to keep things as normal as possible for them. Naturally things were different for a while, they saw the catheter and wounds and would ask a few questions but cancer was never mentioned. We decided to tell the school in the end as the youngest was a little unsettled after the op but it may have just been coincidental. On Father’s Day my oldest asked me what would have happened if I hadn’t had my prostate removed and I passed it off by saying that nobody knows and that I’m ok, he was happy with that.

As others have suggested try and keep busy and do the things that you enjoy, thoughts of the situation will always be in your thoughts until you have a plan but it’s much easier to manage if you can keep yourself happy and occupied. I now look back and think how lucky I was that it was picked up and so although none of us want to be faced with this situation it’s better to know now and that you can be monitored for any potential treatment in the future.

User

Posted 29 Jul 2025 at 09:30

Hi All

After speaking with my consultant, I have agreed to give active surveillance a try and see how I get on. With all the information I have been given from the specialists it seems like a sensible approach at this moment in time. I was wondering if there are many other guys on here doing the same and how you are coping and finding the process. Thanks in advance.

User

Posted 29 Jul 2025 at 10:45

Hi again Dave.

I'm fairly laid back and didn't struggle with AS. I was unlucky and eventually had surgery but AS still gave me nearly two years of being free of the side effects the op has left me with.

Of course, you like most of us will get a bit of PSA anxiety. But, you still get that after radical treatment, checking that it hasn't come back. 🙂

Please keep us posted on how you get on.

Good luck, mate 👍

User

Posted 29 Jul 2025 at 11:56

It's very hard for me to put myself in your position.

I fully understand men who just want whatever is causing the problem taken away as soon as possible. Whatever the consequences of radical surgery.

But I can also see the positives of the AS route, where the cancer is judged to be suitable for monitoring.

I guess it does come down to your personality in the end. If you are a worrier the AS might just be something else to worry about. But if you can deal with the fact that it's still in there but not likely to cause a problem short term, then AS might well suit you.

As we see so many cases involve decisions that are so difficult. All you can do is try to be guided by the medics.

User

Posted 29 Jul 2025 at 21:07

Hi Dave,

Welcome to the group. I have found it to be friendly, supportive and a great place to share all the ups and downs.

For me, I found it useful to get an understanding of all the terms and technicalities. Most people here seem to introduce themselves with age and scores. They divulge treatment plans and other info too. Not a competition, though it does seem to be a gauge that helps us all identify with each other. Reliable and accurate information is essential and Prostate Cancer Uk is considered ‘the reliable source’ by many individuals and organisations.

I have also found it invaluable to talk about it, openly and in detail when appropriate, with family, freinds and colleagues. I think it helps for partners to read the same information too, then you are both reading from the same hymn sheet and it is easier to have conversations about feelings, treatments, challenges and so on. My consultant started with the softly softly approach until I demanded ‘the numbers’ and the options. I also asked for his estimations on outcomes - I did tell him I would not hold him to this as was trying to cut through all the ifs buts and maybes.

It is a bit s***, takes a minute to sink in and this is just the beginning. You may think you have found your mental place in it all and then new information comes to light and stirs it around a bit. I have tried to take an attitude that acknowledges some less favourable outcomes for me, difficult decisions, sacrifices. I have also considered outcomes and the actions I need to take to mitigates the problems they might present. I do stress though - I am not sitting around fretting and worrying about ifs, buts and maybes. Consider, reflect and plan, DO NOT STRESS, FRET OR WORRY if at all possible to do so.

When it all becomes too much, speak out. There is a lot of support.

So here is my PCa intro:

I am 44, Gleason 3+4 T2c diagnosed eight months ago after four years of elevated PSA blood test results. Latest PSA 3.2 from 2.8 6months earlier. Apparently my surgical plan is up for expediting at August’s consult.

Reach out to me if you wish - nice to find someone in a similar position and age to me. But take care and take time to let it settle.

User

Posted 30 Jul 2025 at 06:44

Take care all and thanks for the advice.

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