Start of journey post recent diagnosis

There is no need to be petrified. Yes it seems scary but try and be positive, keep looking forward, there are very good treatment options available. There are loads of people on this site with very similar diagnosis to you and they've got through it and are now just getting on with life

I had PSA of 5 and 3+4 Gleason. I didn't get my T score (pT2c) until after surgery so maybe it's determined once the prostate is removed and examined.That was nearly 5 years ago

Gerard

Hi Risca,

Welcome to the club that nobody wants to join, but it’s a good first step that you have as on here you will find the knowledge and support that will help you get through this.

Yes you will be scared…everyone IS when they are diagnosed and the waiting is the worst part. Waiting on tests, waiting on test results, waiting on treatment plans…and so on. Try and keep yourself busy and active, be kind to yourself, give yourself lots of treats, Do nice things with your family.It won’t stop you thinking about it but it will help keep your mind off thinking the worst. Once you have your full diagnosis and a treatment plan in place you should feel much better. In the meantime if you’re struggling seek out some support through something like Maggies if there is a centre near you, for me it has been transformational in how I’ve dealt with this disease. And please don’t think ‘It’s not for me’ (as I did for 6 months after diagnosis), go along and speak to them(no appointment needed, just walk in) and see what support groups they have. Also the Specialist nurses on this site are wonderful, they will make time for you and are so knowledgeable' so give them a ring.

I was T3BN0M0 so it had spread the the Seminal Vesicles…I didn’t even know what they were until I got this disease🤣🤣🤣. My PSA was 36 and Gleason 4+3. 2 years since treatment started my PSA is undetectable. So….there is plenty of hope for you that you will be cured. Try and stay positive avoiding Dr Google at all costs and use THIS site as your source of information.

I wish you all the best on you journey, there will be bumps along the road but don’t let this disease define you!

Derek

Hi Dave,

Sorry to see that you've had to find us, but Im glad that you have. You'll get lots of support here, from others who've faced what you're now facing.

If it's any comfort to you, I was diagnosed Gleason 8(4+4), which was later upgraded to Gleason 9(4+5) , T3a, the cancer had just breached the prostate capsule.

I had robotic surgery and 17 months later my PSA is undetectable.

I'm worse than you for always wanting to plan things, a self confessed control freak, but I've learnt with this disease things are often beyond your control. You have to put your faith in clinicians and take and deal with things one step at a time.

As Chris said I'd have thought you'd been given a provisional cancer staging after your MRI a radiological staging. 

Best of luck mate.

I try my hardest to think positively, but in my opinion, you'd have to be Superman to escape completely unscathed.

PCa to me, is like an unpleasant mother-in- law who visits too often, for too long and is very difficult to get rid of.😉

Edited by member 25 Jul 2024 at 12:49  | Reason: Typo

Morning Dave.

Sorry to hear about the cock up. It's not good enough.

I'm due an 18 month post op follow up call from my CNS soon. I know for a fact she'll not have accessed my last 3 PSA checks. But at least I'll be able to tell her that the results were fine and I'm doing OK. She'll then be able to tick a box saying I've been done. 😁

So, update time. Just got back from appointment with Onco where it was explained to me that about 5% of men have a condition where the PET scan does not show any signs of cancer, even the cancer that the biopsy has proven to be there, let alone any spread - Yup, I'm in that 5% so no clearer at this point as to if the little sod is confined to the prostate or not.

Looking to progress now on the assumption that there is no spread and plan treatment on that basis. Been offered the options of surgery or RT (with Brachy for good measure) + HT for 3 years.

Trouble is I really can't make up my mind on what option appeals the most (or should that be appeals the least?)

The "bish bash bosh" of surgery to get the dam thing out appeals but the risk of long term incontinence and ED puts me off. On the other hand having the treatment ongoing for 3 years and the risk of less severe but 3 years worth of side effects puts me off this option.

Daft as it seems, a part of me wishes there hadn't been options, just a simple case of cracking on with what's available.