46 years old and diagnosed yesterday

User

Posted 01 Jan 2025 at 17:34

Hi All, my name is Ian I'm 46 years old and diagnosed yesterday with prostate cancer. I'm in shock, I only had a PSA done as I had been suffering with increased urination at night. My PSA for my age was only slightly raised but I was booked for an MRI. After having this I was then given the option of biopsies, given my family history of cancer, I opted to have this done. On the day of the biopsy procedure I was almost made to feel silly for going through with it as, and I quote "there are only a couple of slight dark patches on the prostate". I nearly pulled out but went ahead.

Luckily I did as from 23 biopsies 7 came back positive to cancer and that the cancer was on both sides of my prostate. When I got the call I was shocked, there was alot of information thrown at me including surgery. I'm currently waiting for an appointment to discuss treatment options.

I'm not sure how I feel about all this or how I'm meant to be feeling. I keep getting messages telling me to be positive.

Anyone able to offer advice on how you dealt with a diagnosis and navigating the information and treatment options I would be very grateful

User

Posted 02 Jan 2025 at 16:17

Ian, I was diagnosed at the age of 46 in November 2016. Now, just over 8 years later, I'm fine with an undetectable PSA.

I had a prostatectomy and was regraded Gleason 9, pT3bN0M0. I had positive margins, peri-neural spread. It wasn't a good place to be.

I had salvage radiotherapy and hormone therapy. I had radiation proctitus, bowel and bladder incontinence. My erectile dysfunction resulted in a penile implant.

I now lead a normal and healthy life. So, don't lose hope and don't despair. The NHS did a wonderful job sorting me out.

User

Posted 02 Jan 2025 at 18:23

Hi,

Thank you to those of you who have replied, it's great to know other men going through similar experiences and that you have come out the other side.

From what I understand so far is that the cancer is both sides of the prostate but it is stage T2NOMX which i believe means that it's contained within the prostate. My Gleason score is 3+4

I'm yet to have an appointment to discuss treatment, however, the nurse said an MDT meeting discussed my case and they are leaning towards radical prostatectomy.

User

Posted 03 Jan 2025 at 09:12

Being diagnosed with prostate cancer is never good news but your biopsy results look encouraging in that it is very treatable with a number of options likely to be open to you. In the UK, given your very young age, there seems to be a very strong preference towards surgery. You will know more when you meet with the doctors who are to be involved in your care moving forward. I think because radiation can increase slightly the risk of other tumours developing in the future the preference is surgery for a man who has potentially 30+ years of life in front of him. Good luck with whatever treatment option you choose.

I am mindful as a woman, a partner of someone who has had a radical prostactomy that my focus is primarily on eradicating the disease and perhaps not so much on the side effects of urine incontinence and ED. I suppose like many partners I think we will address those issues if and when they arise in the future.

Edited by member 03 Jan 2025 at 10:36 | Reason: Not specified

User

Posted 03 Jan 2025 at 09:26

Hi Ian

That's not the start to the New Year that anyone would want mate, but try not to over worry, as from what you've told us there are lot's of options open to you in terms of treatment. Spend the time before your appointment, researching the different options, so you are as well informed as you can be. This forum is a great place to find information and chat to people who have already been through this.

Ask lots of questions at your meeting, and take notes (or preferably take someone with you who can do this) as you will not retain half of what they say. Don't feel pressured into making a decision until you are ready. You'll be fine mate, even though it might not feel like it now.

Good luck, and keep us posted.

Ian H.

User

Posted 03 Jan 2025 at 12:27

Hi Ian - very sorry to hear about your diagnosis, but there is a lot of information and support to draw from here. My own experience with the NHS has been hugely positive: they swung into action very quickly and have continued to be very responsive over the past 6 years since my diagnosis. I hope your experience will be similar.

You mentioned that you're not sure how you feel about all this or how you're meant to be feeling. Don't worry about that: it's a shock that no-one is truly prepared for, and there is no 'right' way to feel about it. But perhaps the most important thing is to be practical: when you have your appt for discussing treatment options, it's useful to prepare some questions beforehand, so that you don't forget to ask them. Don't be afraid of asking the consultant what THEY think is the best option, nor of asking about the side-effects of the different options etc. And as others have mentioned, don't feel pressured to make a decision about treatment at the meeting: discuss with your partner, ask questions on here etc before you make your mind up.

All the best to you, and do keep us posted.

Craig

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User

Posted 01 Jan 2025 at 18:50

Hi Ian, sorry you’ve joined the club. I had a similar experience and had quite a shocked doctor when he delivered the news as everyone was sure it was an infection.

At the start I was terrified. I am a year older than you with a young family but tried holding it together for everyone else. Still trying :-(. I did the usual and googled everything which wasn’t the brightest thing at the time as a lot of the studies don’t exactly fill you with confidence but after 3 months I’ve become a lot more positive. I was Gleason 9 t3a and the information I have got from this forum has given me a lot of comfort from people in similar situations. Treatment has come so far and still improving compared to only 10 years ago. I have to remember a lot of the studies started 10-15 years ago when there wasn’t the same options. I heard words like aggressive and quickly spreading but was comparing this to other forms of cancer which I know to be wrong. I wanted to get it removed and when the surgeon didn’t want to I was at a severe low but my urologist was brilliant and explained the reasons behind it.

In terms of dealing with things I’m sure each person is different. We have different PSA, staging and Gleason but I’d really advise using this forum and finding similar situations to yourself. For me I’m usually very closed off but found talking with people has been a major source of positivity. Use the nurses that will be assigned and ask all the questions you need to them and the doctors. Write them down and don’t feel like you’re wasting their time, you’re definitely not.Whilst this has been a bombshell it has also shown me what is important and where I need to spend my time and energy and that’s has helped a lot. But like I said everyone is different and I’m only 3-4 months into this myself. There are many others with a lot more experience than I on here.

I wish you all the best and we are all rooting for each other on here. You’re not alone.

Good luck

User

Posted 01 Jan 2025 at 21:28

Hi Ian

So sorry you have found yourself needing to trawl this forum but I am sure you will find much of the content useful. A diagnosis anytime is devastating but for young men like yourself the news is even more difficult in many respects.

For people to give you the most helpful advice, benefits of their own experiences etc it would be useful if you could provide some more information about your individual circumstances. This includes your PSA, your Gleason grade and stage of the disease. This information is what is used by medical professionals to make suggestions on the best course of treatment. Dependent on stage and grade of your disease you may be suitable for Active Surveillance, focal treatments, surgery, radiation with and without hormone treatment etc.

Hopefully you will have lots of options open to you, but where you are now potentially choosing your treatment option is the most difficult place to be in many respects.

User

Posted 01 Jan 2025 at 21:52

Hi Ian

What a shock to be diagnosed with PC at such a young age? I was diagnosed at the age of 71, I had surgery and now after 13 years I am still here an enjoying a full life with my wife and three grandchildren!

Once the dust has settled you will begin to see a way through this. You are young and there are some amazing treatments available. There is no need to rush, take a lot of advice and opinions before you move forward. This is a good forum to make 'friends' who will provide a lot of support; there is a great deal of collective knowledge here. Please keep in touch and let us know how you are getting on.

Good luck.

'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate

User

Posted 01 Jan 2025 at 23:45

Hi Ian, I was also diagnosed on New Year's Eve!!. PSA 4.6, MRI Pirads 5, found grade 2, Gleeson 7 (3+4) localised cancer.

Clinic was really busy - just saw nurse who, I felt rushed it all and only discussed active surveillance. I'm 61, very fit marathon runner - not sure I can cope with anxiety of AS regime - my logic says cut it out and move on.

I'm going to email the nurse tomorrow with my thoughts and feelings and ask for the rationale behind the AS approach

My mind is so muddled - although much better than the total panic I've had since MRI two weeks before Xmas - totally overshadowed Xmas period

Good luck everyone

User

Posted 02 Jan 2025 at 16:17

Ian, I was diagnosed at the age of 46 in November 2016. Now, just over 8 years later, I'm fine with an undetectable PSA.

I had a prostatectomy and was regraded Gleason 9, pT3bN0M0. I had positive margins, peri-neural spread. It wasn't a good place to be.

I had salvage radiotherapy and hormone therapy. I had radiation proctitus, bowel and bladder incontinence. My erectile dysfunction resulted in a penile implant.

I now lead a normal and healthy life. So, don't lose hope and don't despair. The NHS did a wonderful job sorting me out.

User

Posted 02 Jan 2025 at 18:23

Hi,

Thank you to those of you who have replied, it's great to know other men going through similar experiences and that you have come out the other side.

From what I understand so far is that the cancer is both sides of the prostate but it is stage T2NOMX which i believe means that it's contained within the prostate. My Gleason score is 3+4

I'm yet to have an appointment to discuss treatment, however, the nurse said an MDT meeting discussed my case and they are leaning towards radical prostatectomy.

User

Posted 02 Jan 2025 at 21:02

Hey Ian,

First up. You've clearly grabbed fistfulls of fight ready to face whats coming head on....Love it.

Youve got this lad. Continue to grab hold of any diagnosis and absorb it as best you can. You're at the very worst part, if at all.

I was diagnosed at 46, almost exactly 3 years ago. I went on to have RP with 80% nerve sparing.

My continence was bordering on perfect 9 days after surgery, perhaps attributed to my age.

ED?

If im as honest as can be?....Look at 2-3 years before you are as close as back to normal as can hope for..

It is what it is.

Im due yet another PSA test in Jan, I dont fear it. This is part of who i have become.

Apologies for the single sentences.

Its my way of hopefully becoming detatched from Prostate Cancer.

Jamie.

User

Posted 03 Jan 2025 at 05:38

Hi Ian.

I too, am sorry that you've had to join our club but let me give you a belated welcome.

I'm glad that you've found some help here. If nothing more, this site, reduces the sense of isolation, that many feel when first diagnosed.

It's a shame that it's hit you at a young age but as Jamie implied, that may work in your favour, if you require radical treatment.

Please keep us updated mate and best of luck. 👍

User

Posted 03 Jan 2025 at 09:12

Edited by member 03 Jan 2025 at 10:36 | Reason: Not specified

User

Posted 03 Jan 2025 at 09:26

Hi Ian

Good luck, and keep us posted.

Ian H.

User

Posted 03 Jan 2025 at 12:27

All the best to you, and do keep us posted.

Craig

User

Posted 03 Jan 2025 at 20:05

Thank you for your reply, it's pretty scarey even though mine is not advanced. So much information out there, often quite extreme which puts the fear in me. It's great hearing from other men going through the same thing.

One thing I'm tired of already is people keep telling me to be positive, I know it comes from a good place but feel like people need me to be positive for them so it's not awkward. I'm probably just being a miserable old git lol.

Let me know how your journey goes

Thanks

Ian

User

Posted 03 Jan 2025 at 22:16

Ha yes 'think positive', 'prostate cancer, yeah that's a good cancer to have' and other such nonsense. Get used to all these unhelpful comments. 2.5 years in and I still get these even now.... I guess folks mean well.

User

Posted 04 Jan 2025 at 04:32

Jim234,

If you are going to get cancer it is a good cancer to get, it’s not nonsense. Fatalistic views that all cancer is bad and deadly do not help people that get a diagnosis of cancer that carry those views. They do need to hear positive feedback, certainly more than others that may be more pragmatic about their diagnosis wondering what do these people know. I agree though that those comments coming from someone who has not experienced cancer and have only heard or read about prostate cancer are still meaning well when they make those comments. It might come across to the other person but what do you know, you are not in my situation, but coming from someone who has experienced it and says yes you will still be here in fifteen years is meaningful. If you have ever known friends or family that have had pancreatic cancer and gone in six months, or stomach and esophagus cancer and gone in less than two years, or brain, colon, on and on, all ending your life way sooner than prostate cancer. For most people they hear cancer and that is all they hear. Twenty one years ago I was diagnosed with non Hodgkin's lymphoma. Although I needed chemotherapy it was considered non aggressive but incurable and would likely need more treatment. I had a newborn and thanked God for the cancer I did receive that I would not be gone in two years but maybe at that time eleven. I lived my life with my daughter knowing that. I did need more treatment and still now in remission 21 years later and still do thank God for that cancer. I now thank God for my cancer being prostate cancer as I know I have many years still ahead with my daughter. A fender bender is always better than a fatal accident and most people I know would rather be in the fender bender. Ian, accept people’s gracious comments and acknowledge to them that in your situation that their is a lot to be positive about and not judge them for not being in your situation and not being unhelpful comments. These are your friends and family and are there for you.

User

Posted 04 Jan 2025 at 08:08

Hi Ian

I’m sorry that you have had to join us but I think you will find great comfort in joining the forum. I worry about most things in life and so I found hearing about other people’s journeys helped me to realise that I was not alone. In the early stages I only told close family and a couple of friends and it’s difficult for them as they hadn’t been directly faced with this situation. In between appointments I built up some notes on things I wanted to ask/know and then discussed them with either the specialist nurses or consultant. The nurses were a great point of contact as I could call them anytime and they were always willing to answer questions.

The difficult periods are the days/weeks in between appointments and also choosing your treatment path. At the beginning I found it hard to understand why I was having to choose, but now I understand with PCa that there are a number of treatment options and many factors affect which one may be chosen. During these periods try and distract yourself, whatever you enjoy doing (hobbies/socialising etc), go out and do them, this will help you to continue some sort of normal life without completely drowning yourself with the thoughts of PCa.

I wish you all the best and as others have said please feel free to post your thoughts and progress, we’ll all do our best to help.

User

Posted 06 Jan 2025 at 18:53

Hi Ian,

I’m 45 and was diagnosed in July this year with a very similar stage to yours.

I had my RARP on 23rd December and am recovering well. I have had no issues with incontinence other than the occasional very small dribble if I cough or sneeze etc, but feel like the pelvic floor exercises will sort that out. I’ve even had some mild rumblings of the other type, although I think that will be a longer journey.

I understand your frustration sometimes at peoples positivity- it is something I struggled with. I didn’t feel like the prospect of ED or incontinence at my age made it a good cancer to have or compared to peoples 80 year old father that had just been diagnosed.

However, I continue to be impressed with how quick I seem to be getting better and am positive that I will continue on this upward trend! I spoke to an oncologist about brachytherapy, but feel like surgery has been the best decision for me. If you do opt for surgery, don’t worry a too much about it and having to have the catheter in etc. Much like the biopsy, it’s not as bad as you imagine and you do build up a tolerance for these various procedures.

I would advise you to go and speak to the people at your local MacMillan centre. They sorted me out with some talking therapy which really helped me with how I was feeling.

If you have any questions, just ask on here as there are loads of people willing to share their own experience of this journey.

Best of luck 👍🏼

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