Just diagnosed.

Hello Jay (Jay01) 

A warm welcome to the group, although I am so sorry to find you joining us. 

Your Consultant is spot on and is following the NICE guidelines putting you on AS and 3 monthly PSA's with an MRI after 18 months. As a Macmillan volunteer I can't advise you to go against medical advice. As someone who has been on his own Prostate Cancer journey I can say this:

* IF your PSA rises surgery isn't the only option to cure - there's Brachytherapy and Radiotherapy which are both less invasive and should also have a curative outcome, on your present diagnosis.

* Anxiety on AS waiting every 3 months for a test isn't great. Your GP should be able to help with this, there's also Anxiety UK on 03444 775 774 or www.anxietyuk.org.uk

* You can call our Support Line on 0808 808 00 00 (8am to 8pm 7 days a week) for help and advice.

I hope the above helps - please do feel free to ask anything - however trivial.

Best wishes - Brian.

Hi Jay 

So grade group 3 is med aggressiveness, , good that your PSA has come back down again.

Probably the most important thing is the 3 monthly PSA tests and pref annual MRI.

Because nothing is showing on MRI I would try and push for a MRI after one year or even before just to check, slightly unusual that nothing shows on the MRI.

I was on AS for 4;years and it was ok but the constant testing can get a bit nerve wracking although I didn't fancy the surgery.

Anyway looks like time on your side do just keep monitoring.

All the best 

Steve 

.

I’d agree your best option is active surveillance given the facts so far. I have also just been diagnosed and selected active surveillance. 

You didn’t mention your age, but plenty of people are on active surveillance for many years and never need to undergo radical treatment. You may hear “die with prostate cancer not of it”.

PSA is not a precise indicator it will fluctuate. Keep on top of the monitoring don’t leave it all to others. Know how will collect the blood. Who books the test. If you have a target alert for absolute charge between tests or a maximum charge over 6/12 months etc. Where you can view the PSA results  PSA velocity and PSA doubling time are import parameters. They take a few test results to settle down at least three results over a year. If you can’t calculate them yourself a good question for your review. 

You can add details of your journey in your profile and click someone’s name and read their journey if they added it. 

Hi Brian,

Thank you for the advice, it's just a case of getting my head around all this.

Thanks again

Jay.

Hi Steve,

Yes, I have to trust the process, even if my head is spinning a bit.

Can I ask, are you still on AS?

Thanks Jay

Hi John,

Thanks for the reply. It did throw me a bit when I went back for my first PSA and it came back lower. I am certainly doing my homework for all this. I'm 57.

Thanks for the advice.

Jay.  

Hi Jay, no, I'm not, AS for 4 years started 2013, Radiotherapy in 2017,  tumour grew from about 3mm to 13mm in that 4 years.

That's what u have to keep your eye on, tumour growth although at the moment nothing shows on your MRI.

Best wishes 

Steve 

From my experience I wasn’t afforded any choice but to life with my cancer. It’s was diagnosed stage four to begin with 3.5 years ago so I soon had to get used to it.

But, with people on this site who have lived with the cancer 15 years it’s my assumption that 20 or 25 years is our expectation for our futures.

So buckle up and think that life is very much altered if you let it, but not if you don’t. So it’s your choice to live your “new you” as you want to.

Give yourself time and you will be able to enjoy most of what you always did, so think on and remember there’s no mad rush.

good luck

I wonder how I would feel if I had been diagnosed several years ago with lower PSA and a single small tumour. Watching the PSA rise and the tumours grow would I think now was the time to leave AS and start treatment instead of just starting AS. 

An interesting comment JohnPM. I have been around here long enough to see 2 people go from AS to Stage 4 with no warning.

Everyone has a different journey - I am a "lucky boy" - my initial PSA on diagnosis was 182 - yet I an still Stage 3 on a "curative pathway" after over 4 years.

It's easy to say "what if" or "should I have done that" after the event. It's cancer and once you have a diagnosis it's not going away.

I hold my hands up and am not a fan of AS. At the end of the day you are dealing with something that's unpredictable, it's a killer and in my view (not medically trained) needs dealing with as soon as possible. I do follow the NICE guidelines but do wonder sometimes if they need a good overhaul.

Best wishes - Brian.