Diagnosed today 43

User

Posted 07 Feb 2025 at 14:09

Hello, I’m 43 and today diagnosed with prostate cancer. My heads a bit of mumbled mess at the moment with what today next. My specialist nurse is catching up with me on Monday for another chat ironically I’m taking my dad to the hospital as he’s in the process of getting treatment for prostate cancer.
my psa was 2.98 so was sent for a mri that came back pirads 3 and then biopsy they took 15 corse and out of them 2 came back showing cancer. I’m not 100% sure on the gleeson scores as both 6 and were mention but was told it was very low grade, and the nurses words were that they were very lucky to find it. She’s confirmed it’s confined to the prostate. It’s probably something that may not have caused me issue for a number of years but now I know it’s there.
my next big choices are very active surveillance as she put it or robotic prostate removal with them confident at the moment they wouldn’t damage any nerves. As I say I’m very young in prostate cancer terms and just unsure of which way to go. I lost my mother to eye cancer 14 years ago which spread and her biggest regret was not getting her eye removed. I understand that prostate and eye cancers are very different, but I’m scared I leave it and it’s too late.
I’m quite active and fit so that’s in my favour but I’ve got a 7 year old that’s sports mad so that helps. I’m just lost at what to do next as I want to be here for my boy for many more years but also still be able to have a good quality of life. Any advice big or small would be greatly appreciated.

Thanks

Gary

User

Posted 07 Feb 2025 at 14:09

Thanks

Gary

User

Posted 07 Feb 2025 at 17:20

Hi Gary

Sorry to see that you've had to find us, mate, but welcome to the forum.

You're a young man and if your cancer is low grade, low volume, and well confined to the prostate. I would opt for active surveillance, thereby avoiding any of the possible side effects of radical treatments. However, if you take the AS option, please ensure that you are actively monitored.

Best of luck mate.👍

User

Posted 07 Feb 2025 at 17:28

Hi Gary

Sorry that you've found yourself having to join this group but I've found it informative and supportive and hearing advice and the journeys other men have taken has helped me greatly. You are much younger than most of us here and your treatment choice (& decision) although the same as mine (I'm just 3 weeks post diagnosis T2BM0N0 Gleason 3+4) in your early 40's will be different. All the medics and this forum have told me not to panic and to take my time. So far I've seen a surgeon in central London who's said he's content for me to begin AS and to see where we are in a year. His advice although directed by the biopsy and the MRI also takes into account age, lifestyle (how sexually active you are) and fitness & weight. I'm seeing an Oncologist next week and then will take a while to decide what to do, because it appears that with your type of diagnosis and mine no one will tell you specifically what to do. I'm beginning to feel that delaying either surgery or RT is probably just delaying the inevitable and the younger I start it the better always bearing in mind that a significant majority with Gleason 6 & 'good' Gleason 7 don't have treatment within 15 years and as I'm 65 next month that's a consideration but it won't/might not be for you. Sorry, I'm prattling on but it's cathartic to get it down in writing because these are difficult decisions.

Good luck and keep us posted.

Cheers, Adam

User

Posted 07 Feb 2025 at 18:13

Hi Gary

I'm sorry to read your news and you've had to find this group, but you'll find a huge amount of support and knowledge on here.

I'm sure everything's a blur today and you'll need time to take it all in, but don't rush into anything. You have more than 2 options. Speak with your nurse and ask her for all the options. Treatment options are also on this website. Not all treatments are suitable for everyone and some are dependent on the position of the tumour. Some guys choose AS, but you also have to be in the right headspace for this option. Robotic nerve-sparing prostatectomy, even with nerve-sparing techniques, some men may experience erectile dysfunction after surgery, and recovery time can vary. Do as much research as possible and explore every avenue.

Unfortunately, as I am sure you are aware, its not a "one size fits all" for prostate cancer and as Adam said above, with your diagnosis, no-one will specifically tell you what to do, but they should give you all the options that could potentially be suitable for you.

Wishing you all the best!

Seb

User

Posted 08 Feb 2025 at 12:36

Very sorry to hear about your diagnosis, Gary. I can't offer any advice as my own diagnosis was very different to yours, but do prepare a list of questions and make sure you get answers.

The good news is the treatment options for PCa have never been better, and new treatments are coming onstream all the time, so there's every chance that your condition can be treated effectively. Wishing you all the very best.

Craig

User

Posted 08 Feb 2025 at 16:32

Personally I found the uncertainty difficult with AS. I was scored G7 but still some consultants were suggesting I hold off on surgery. PSA tests during AS fluctuated so much I found it really hard to gauge what to do!

With G6 there’s even more argument for AS. But I will say that at 12 weeks post surgery I’m in a much better head space than I was prior to making the decision.

User

Posted 08 Feb 2025 at 17:18

Gary,

If it reaches a point that you are looking at Surgery. Definitely check Mark1975’s profile. He found a surgeon in the UK in London using the new single port robotic. I hear many hospitals are not yet using them.

User

Posted 09 Feb 2025 at 09:02

Hi Gary

Your mind naturally goes into overdrive but try not to let it consume you, distract yourself with things you enjoy. It’s good to go along to the appointments with questions, the nurses were very helpful and took as long as needed to answer everything. We took some notes as well whilst at the appointment and asked for copies of the scan and biopsy results.
The recovery is going ok, the first few days you’re obviously sore and tired, plus you have the catheter, but it wasn’t a problem. You just get used to emptying the bags and positioning yourself so that it’s comfortable. I did have a UTI confirmed a week after catheter removal which I think is fairly common, antibiotics have cleared it up. You just have to be careful and listen to your body, I’m now out walking around 2 miles per day plus pottering around the house and feeling ok. The internal wounds give you a reminder every now and then if you do too much and so it’s just a case of doing things in moderation.

I hope your appointment goes ok tomorrow.

User

Posted 15 Feb 2025 at 09:20

Hi Gary

I was diagnosed in March 24, I was told be the CNS I had a very small lesion 2mm Gleason 3 + 3 group grade 1 T2 confined within the middle of the gland and I was being put on AS, I asked to see my MRI. July 23 I managed to get and appointment with the CNS to go through my scan etc.. Oops.. my scan showed 4 lesions and the core length was 4mm not 2, turns out they had given me the wrong diagnosis, I was group grade 2 T2c. Insisted on surgery. post op findings CPG group 3, Gleason 4 + 3 with at stage of T3b with seminal vesticule involvement.

My point is IF you decide on AS ask to see everything and make sure you push for honesty and openness, It can be scary to know but it is better to deal with any side effects now than 5 of 10 years down the line with the possibility of mets. I am 2 and a half months post op and 99.999% continent, ED is an issue but I have not started any treatment for that yet.

Good luck with any decision you make just make sure you have all the facts so it can be an informed decision not just based on what you are told.

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User

Posted 07 Feb 2025 at 17:20

Hi Gary

Sorry to see that you've had to find us, mate, but welcome to the forum.

Best of luck mate.👍

User

Posted 07 Feb 2025 at 17:28

Hi Gary

Good luck and keep us posted.

Cheers, Adam

User

Posted 07 Feb 2025 at 18:13

Hi Gary

I'm sorry to read your news and you've had to find this group, but you'll find a huge amount of support and knowledge on here.

Wishing you all the best!

Seb

User

Posted 07 Feb 2025 at 19:47

Thanks for the support and advice. I’m going to spend the weekend trying to figure out my next steps.

Thanks

Gary

User

Posted 07 Feb 2025 at 21:11

Gary,

I am really sorry to hear about your diagnosis at your age. It is important to note that Gleason 6 in some circles of the prostate medical profession believe it should not be declared prostate cancer at that stage due to possibly 10 to 15 years in some cases before treatment might be needed. That is also why active surveillance came into existence because 20 years ago everybody with Gleason 6 was sent off for surgery or radiation and studies showed many would not have needed treatment. The most important thing in your life is clearly your 7 year old. Consider if you were on AS and it lasted 10 years he would be 17 and all the years that you were enjoying the highest quality of life with nothing interfering with it. I don’t know what eye cancer protocol’s are but am aware that Prostate and Non Hodgkin’s lymphoma have active surveillance or watchful waiting protocol. What is important that if you go that route you must be vigilant with routine follow up of PSA’s , MRI’s and further biopsies so that if treatment is needed it is caught soon.

User

Posted 07 Feb 2025 at 23:48

Hi Gary

I’m sorry that you’ve had to join us at a young age. Hopefully you will find this forum helpful and comforting to know that you’re not on your own. Try and gather as much information as you can, speak to your specialist nurses, mine were so helpful whenever I called them. My wife came to all of the appointments as well which definitely helped, not just for support but also to pick up on the bits of information that I missed.

Your numbers are pretty low and so as others have commented you’re in a good position for AS, just make sure that you’re monitored. At the start of the process the waiting in between appointments and making a decision is hard and consumes most of your daily thoughts, but give yourself time to look into all options, it’s very much treatable if caught early like yours.

I was also diagnosed at 43 last September, initially given the options of AS or surgery. My PSA was similar to yours but PIRADS 4 and T2c and so I opted for surgery as the cancer was in both sides of the prostate.

i wish you all the best and feel free to ask any questions.

JP

User

Posted 08 Feb 2025 at 11:35

Hello jp my minds like a rollercoaster at the moment. One minute I think I know the direction I’d like to go then next I’ve changed again! I’ve got a list of questions as long as my arm to ask the specialist nurse on Monday.
can I ask how you found the op in terms of recovery. Hope you’re doing well now.
many thanks again to everyone that’s came back with reply’s.
Gary

User

Posted 08 Feb 2025 at 12:36

Very sorry to hear about your diagnosis, Gary. I can't offer any advice as my own diagnosis was very different to yours, but do prepare a list of questions and make sure you get answers.

Craig

User

Posted 08 Feb 2025 at 16:32

With G6 there’s even more argument for AS. But I will say that at 12 weeks post surgery I’m in a much better head space than I was prior to making the decision.

User

Posted 08 Feb 2025 at 17:18

Gary,

User

Posted 09 Feb 2025 at 09:02

Hi Gary

I hope your appointment goes ok tomorrow.

User

Posted 13 Feb 2025 at 13:29

Hello folks, back at hospital today to discuss things and to try and make a decision on the next steps.
basic run through of what was said.
right side 3+4 only 1 core from 8 taken was positive maximum of 7mm

left side 3+3 3 cores from 8 taken positive maximum of 4mm

no signs of bulging and confident it’s not near edges. Nothing alarming on mri and prostate Dre came back fine.

not a aggressive form and confident it’s slow growing. will need treatment at some point in my life but could be a long time but again can’t say for certain.

I’ve been offered 2 forms of treatment.
active surveillance which worries me. Don’t want to risk leaving it too late to be treated or full robotic prostate removal, which if I’m honest I’m leaning towards more.
both have positive and negatives just need to try and figure out what to do next.
got a appointment with consultant surgeon next Thursday to discuss it more. 🤯

User

Posted 13 Feb 2025 at 14:19

Hi Gary.

I can't imagine having to make the decision you are faced with. I was heading that way when I got the all clear and was already trying to give it some thought.

Choosing one or the other option must be so very hard, with the very limited information available.

I wish you well with whatever option you decide upon, I must admit I was expecting low grade non aggressive cancer based on the mri and I was leaning toward removal.

Mick

User

Posted 15 Feb 2025 at 09:20

Hi Gary

Good luck with any decision you make just make sure you have all the facts so it can be an informed decision not just based on what you are told.

User

Posted 15 Feb 2025 at 15:04

Paul that is really worrying that they missed such significant cancer and spread. Following surgery my husband who had initially been told he had one tumour 3:4 had four tumours with a small tumour being 4:3. As a consequence of this experience and the experiences of other men such as yourself I have read about I am not sure I could recommend AS to anyone and feel comfortable that something significant had not been missed.

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