I'm new here, received diagnosis in September 2022

Hello RGL - good to meet you! I'm really sorry to hear of your diagnosis and now the quandary you find yourself in.

The difficulty is that nobody can tell you what to do as it is such a personal choice but I will tell you what my husband has done.

My husband's father died of prostate cancer and his grandfather died of 'prostate problems' in the 1960s when a cancer diagnosis was heavily stigmatised and not talked about. His mother , her mother and his mother's niece all died of breast cancer when in their 40s. So there is potentially a genetic risk there which is now being investigated. We have told our children all this family history and advised them to get regular checks (they are all in their 40s).

Because of the family risks, my husband has been having PSA tests for some 12 years. It has always been on the high side and he agreed to go on watchful waiting.   He was advised by a urologist about 5 years ago to go from annual checks to 6 monthly and he would need to be referred back if his spa reached 10. So, July 2022 he reached 10!!! He had a MRI scan followed by more diagnostics and was confirmed as T3aN0M0 Gleason 4+3=7. He is now 75 years old. So, we had some 10 years without intervention before proceeding to hormone therapy and radiotherapy.

Weighing this up - he had 10 years without intervention and eventually reached a stage where he needed something doing. Would he have been better to have had the intervention when he was 65 and a lot fitter? We will never know. What we do know is that during those 10 years we were able to just get on with life!  His treatment, we were told, is with the intention to cure and we know that, in the last 10 years, there have been great medical advances in the treatment of prostate cancer. Will this medical progress continue in the next 10 years? We don't know. we do know that the stage of his cancer has a recurrence rate of 30%. If he had had treatment sooner would he have been faced with better 'complete cure' rates? We don't now!

I'm afraid this does not solve your dilemma but its an indication of the questions which keep meandering through my post radiotherapy (his RT not mine) brain.

What I would urge you to do is to ask for genetic screening. You have been diagnosed with prostate cancer at a very young age and you have a close relative with the same diagnosis.  I would also advise you to question whether, because of your young age, your cancer is potentially more aggressive and so needs treating more urgently.  I would not advise just burying your head in the sand but would advise finding out as much as you can about prostate cancer, its treatment etc and your family medical history.

Best of luck

Hi Ryan. So sorry to hear your diagnosis and the quandary you are in. So much more so because of your relatively young age.

I had a Robotic-assisted radical prostatectomy (RARP) last September. I am 68 with grown up children. I had the option of that or radiotherapy. In my case the cancer was very agressive and immediate action was necessary. I feel very privileged on the swiftness, care and attention I have received all along from the NHS and I feel very privileged to be alive with the potential prospect of living to a ripe old age.

I agree with what Worriedwife has wisely said. Only you can make the decision on what course of action to take and when you should take it. You need to research as much as possible. Prostate Cancer UK has a wealth of information in free to download booklets, which I found invaluable. Most prostate cancer is very slow in developing. It is said that many men develop the cancer (possibly 1 in 7 or 8) but most die with the cancer and not of it. My next door neighbour died recently at 92 of something totally unrelated. He had been diagnosed in his 60's and not had any treatment.

I chose a prostatectomy because the option for radiotherapy is still available after but not vice versa. I also wanted the cancer to be physicaly removed from my body. Many others on this forum chose radiotherapy and hormone treatment for their own reasons and have been successfully treated. I mention radiotherapy because you don't actually state that is an option. If it is for you then that also has to go into your think tank. What I have learnt is that no matter what course of treatment, evry man is different as far as side effects are concerned. Some men only suffer very mild side effects but I guess there is no knowing how they will be beforehand.

What I would say is that the operation was a doddle compared to what I expected. I was petrified at the thought of it and really believed I would not survive it. The intense care I received and formalaties however made me forget my fears as soon as I sat down next to my bed and was seen by the first nurse. I had the operation in the morning and was walking around the next morning and discharged that evening. Having a catheter was far from being fun however that was for a week and soon passed. Pain throughout has been minimal for me. I didn't have any pain killers and I would describe what I suffered was discomfort (mainly from the catheter) and not pain. I was walking three miles a day as soon as the catheter was removed and driving after a couple of weeks. Side effects for me are ED and urine leakage. Leakage has improved no end and is not now a difficulty to manage. I use one pad a day and am pretty confident that in time that will be totally resolved. ED was a problem to me beforehand as I suffer from Type 2 diabetes. However it is far worse now as I had a choice of non-nerve sparing surgery or risking cancer remaining. I chose the former. Other than that, I felt as fit as a fiddle after probably 3 weeks and was doing everything as before after about 6 weeks.

Very easy for others to say try not to feel depressed. I know I did prior to surgery and in the early days after and I imagine most if not all other men (and their partners and family) have at times. But do try to stay positive, talk to others and seek support if things get too bad in your head. You have at least three massive things going in your favour. It has been caught early, your score is pretty low and you are young. Oh, and a fourth thing (you can probably add more) is that you have joined this forum. Most members are strangers but at the same time are best friends.

Hi Ryan,  It's only natural to be worried about the future.  How much information have you received from your team?  

My biopsy stats might be very similar to yours, Gleason T2 3+4=7 - you should have had a letter spelling it all out. Do look it up to see what all means. It helps to put your exact diagnosis on your profile so you can chat with other guys in a similar position.  From my experience the NHS, with their tight budgets, only give you some of the treatment options following diagnosis and for someone, like me with the cancer contained within the prostate, I was offered HT (hormone injections) followed by EBR (external beam radiation).

After absorbing the situation and reading the literature they gave me, I started doing a bit of research. On the Prostate Cancer website I found details of a procedure called Brachytherapy - no mention of that from my team!  My suggestion to you is do your own research and talk to guys with similar stats to you.  Read all the literature and look at You Tube were there is a lot of expert advice, including one piece from Prostate Cancer UK.

I mentioned Brachy to the first Oncologist consultant I saw and somewhat reluctantly, I felt, was offered an appointment with a Urologist (Brachy) consultant.  I managed to pass all the other health tests - despite being a 76 year oldie with arthritis!  I was put on the waiting list in January. I had my Brachy procedure under general anesthetic a week ago and I'm already back to car washing and snooker!  I should add that not all hospital trusts offer Brachytherapy, so you might have to be referred elsewhere.

Good luck with your journey, whatever you decide.  Do come back if you need more specific information.

Chris (Seajay)

Hi Ryan

I have seen many people ask this question, myself I’m incurable and can only give an opinion. First the operation does not have all the side effects that may affect you, everyone is different, 

Second, it would play on your mind knowing what you have, may or may not grow. 

Your young, getting through an operation is on your side, what ever happens after can be treated. Remember these people have done this many times, if your worried ask at a McMillan centre or if there’s none near you, ( usually one in the hospital somewhere ) phone the McMillan nurses tell them about your concerns. We can give advice but where not professionals just here doing what we can.

Stay safe

Joe

Hi All,

Firstly I'd like to thank everyone for their candid responses, I've found them very useful and it has taken me a while to get around to sending a reply.

I had another PSA test done a fortnight ago and the result was 5.6. I've since spoken with my GP who advised me that my gleason score is 3+3=6. Not too sure what that means exactly but I keep meaning to look into it further. I had a call with my GP on Friday 21st April to ask about having a private referral done for me so that I can get a second opinion on whether my only treatment option is to have the prostate removed; I suspect that this may be the case due to my relatively young age; I understand that if the prostate cancer were to return after having a form of treatment other than a prostatectomy, then there is no longer the option to remove the prostate - is this correct?

I have an MRI scan scheduled next month on the 25th May, so will know more once this has been done. I'm still in the process of arranging a private consultation as this may be covered by my employers medical insurance policy, but I'll post an update here once it has taken place.

Thank you all again for your inputs.

All the best,

Ryan

Hi Ryan 

Your stats seem low , obviously you're very young so need to think very carefully because of potential side effects.

You r correct,  surgery after RT very difficult if not impossible.

So having surgery does give u that option of other treatments if needed.

However at your age ED and urinary issues are something u can do without. Obviously not saying you are Def going to have those issues.

Because of your stats you Def should consider RT because that may well do the trick.

Consider carefully and yes second opinion a good idea  Also possibly consider active surveillance.

Come back when u know more 

Steve 

Hi Ryan

I totally agree with Grundo and the others.

I was diagnosed in 2020 aged 56 and had to wait for 6 months for an appointment with a urologist because of covid.

I had a Gleason score of 3+4 T0 M0 and went on active surveillance.

After a second biopsy in August 22 this had risen to 4+5 and I opted for a radical prostatectomy but was advised that due to my age and the problems I am still having with long covid that I should have radiotherapy and hormone therapy. 

So that's what I've had (you can read my profile by clicking on my cat)

Research every option available to you and best wishes on your journey.

Peter 

Hi RGL,

You are really young to have this, but at the same time very fortunate to have it picked up at this stage. My partner has had Prostate cancer for several years maybe over a decade undetected (according to his consultant) he would have been in his early 40's like you when it began. . We have been told that it's quite rare to have it so young as it's not that common, so in away I feel you've been (lucky?) to have caught it now, but I think because you are so young you really need to keep an eye on it. It really has no business being with you at your age as it's more common and slow growing in older men so to me it seems more worrying.  I'm obviously not qualified to give an opinion as to what to do so please take mine lightly, my gut feeling is to research everything you can about removal and the side effects now and start to mentally prepare yourself, because I think removal is the way forward. You are a young man so you should be in good shape to withstand the effects of removal and make a good recovery. Get all the facts you can and then get it out before it has a chance to grow anymore. It's must be quite contained and small, so if they are offering to remove it, I would consider doing it as soon as you feel ready. Then you can recover, move on and put this all behind you. 

Try not to be depressed, try to think positive. You have had this detected when it's in the early stages. No doctor is actually going to be looking for this at your age because statistically it shouldn't be there. So, consequenty you are in a good place (with a great doctor), you have in fact been given a gift. Act on it now, inform yourself with all the facts of recovery and move forwards.

Best wishes to you and you family, L

Hi Everyone,

  I had my second biopsy last month and received the news on Friday that my gleason score has moved from 3+3 to 3+4. This was the one year follow-up biopsy from my initial biopsy in August 2022, which is when I received my diagnosis of early localised prostate cancer with a gleason score of 3+3. I've been on active surveillance this last year, but my psa has been steadily rising during this time (last one was 7.47 but in the MRI scan I had in July 2023 they said they couldn't really see any difference in the tumour size from the first MRI scan in July 2022).

The Macmillan nurse has recommended that I have a Radical Prostatectomy based on the result of this recent biospy, as some of the biospy samples showed some more aggressive cancer cells I think. I'm taking her advice as I have 3 very young sons I want to be around for, for hopefully many more years, so I have told her to add me the NHS waiting list for an RT. Which brings me to the reason for my post today.

I'm based in Northern Ireland, where there are only a few surgeons that undertake this surgery, literally around 3 surgeons in the NHS I believe. From my research into this operation, the skill and experience of the surgeon appear to have a significant bearing on post-operative outcomes in terms of the potential side effects. In the RT literature I received from the NHS there is a section which states that you can look at information on surgeon outcomes data (www.baus.org.uk/patients/surgical_outcomes) but I've found this to have no outcomes data on individual surgeons whatsoever, unless I'm just not able to find it; you'll find the surgeons listed within this website but it gives no indication as to their outcomes, or experience level. I've now set the ball in motion to have an RT via the NHS, but I have no idea as to who will be performing the operation, or how long I will remain on the waiting list for it. I do have the option of going private for this surgery using my employers Health insurance, and I've already enquired about that. Now that I've made my mind up that an RT is what I'm going to do, though, does anyone think I would be better to go private and just get this over with asap, without remaining on a waiting list for I don't know how long? Further to that, would I be better going to England for this surgery? Does anyone know any highly regarded surgeons or hospitals that I could (or should) use for this? I feel my options are very limited in Northern Ireland, and I'm very anxious and depressed about it all, so just want it over and done with. Very emotional at times about it too, in my own head. Surely if I have the option of going private and getting this over with quicker, I would be better to use that. I could go to England for this surgery and choose someone who is highly experienced, with a high volume of RT's already done. It's just a minefield trying to get the information you need on this, but I definitely would like to have confidence that whoever will be carrying out the surgery will be at the top of their game. If there are any hospitals I should look at for this, please let me know.

Any advice at all about this would be greatly appreciated. Thanks so much for all your replies and advice too, I've found it all to be really helpful in helping me to make my mind up as to what I need to do. If the Macmillan nurse is telling me RT is the best course of action in my case, who am I to argue? I'm barely able to function in work at the moment due to the stress I'm feeling, so I just want to put this behind me as soon as I can.

Thanks for listening.

Ryan

One thing I forgot to mention is that it will be robotic assisted RT offered via the NHS.