Hello - new here this week.

Hi RichE 

Having been recently diagnosed myself, this forum has been a great help to me. I've read your bio and really appreciate your good-humored approach to this. Yes, it is scary, but you will get all the support you need here.

Hello RichE 

A warm welcome to the club you didn't want to join, although I am sorry you have taken out a membership.

You are at that difficult stage of knowing there's a problem, but not quite the full extent and you need a plan to fix the problem.

Apart from the wait for the scan results for the possible eye issue - I would have thought your consultant would have come up with a treatment plan - being a Gleason 8 and an initial PSA of 19 I would have thought starting treatment to be a good idea!

I did notice that you state in your journey notes the wait is starting to affect your mental health - if this is the case please do call our Support Line on 0808 808 00 00 (8am to 8pm 7 days a week) - they can help with this - don't let it build up.

Stick with us - it's a great group (I would say that!!) ask any question, nothing is too trivial and as Neil (Neil101 ) said above - keep up the good humored approach.

Best wishes - Brian.

Hello RichiE, I was diagnosed at the beginning of the year. When I had the biopsy I made a quip about setting up an OnlyFans page but it went down like a lead balloon. They've probably heard it all before.

Biopsy showed not only was it in the seminal vesicles it was in my lymph nodes. Bone Scan and CT showed it was in my bones and there was what looked like a suspicious lesion in the lung, Two biopsies seem to suggest "no definite cancer cells" though.

I was having headaches so they did a CT of the inside of my noggin and while they did not find any prostate cancer in there there was (similar to you) a suspicious lesion behind the right eye socket. So they did another MRI. Now that's two MRIs I've have had and much as they're noisy bloody things they are a useful diagnostic tool and I'm now awaiting the result..

If they would like to give you another express your discomfort to them. I'm sure you won't be the first to have done so and they may be able to offer you some kind of reassurance or help. You don't know unless you ask.

Hello RichE . Your bio made me laugh, nice one! No point beating yourself up though as clocks can’t be turned back. I’ve been there. But you can give yourself a pat on the back that the issue has been identified and you are now well down the ‘being investigated’ road, and it isn’t still lurking unknown. That is definitely a positive thing.

One or two of us have had a nodule in a lung show up on a scan. Mine didn’t change over two spaced scans so the radiologist considered it benign.

They are probably waiting for the eye socket to be looked at before offering you possible hormone therapy. I had to wait until all my scans had been completed as it physically alters the lesions, so any actual changes between diagnostic scans are then hard to quantify. But if you are thinking about radiotherapy, or it’s the only radical treatment offered, you might want to mention it to your oncologist sooner rather than later…?

Being a bit of a geek I read up on how MRI works. Huge kudos to whoever thought ‘let’s line up people’s protons in their cells using a huge magnet, then whack them with a pulse of radio energy, let them go and draw a 3D picture from the energy they give off going back to where they were’. Or something like that. Amazing. It’s definitely a really important (radiation-free) tool for us PCa people now at the start of our journeys.

Good luck with your eye investigation.

Hi all

Thanks for taking time to reply - thats much appreciated - although im not actively seeking out that only fans site DavieDog to be fair.

At my meeting today a treatment plan was discussed if my 'eye' CT scan came out clear. This was upto 2 years of HT interspersed with 20 days of RT at some point with a. view to cure. I have my CT scan tomorrow - or is it today now - and a follow up meeting on Friday. So hopefully a plan will be put together and things will kick off from there. I am relatively hopeful as i think it would be unusual to have just one spread to the eye orbit with a psa of 19 and the only other cancer noted locally confined to the seminal vesicle - nothing in lymph nodes, pelvis etc. But life is unusual atm.

I'll keep you posted.  

Hi RichiE

Hope the scan goes OK today, I’m sure you will be fine with it all.

As others have said it really is the worst stage to be at, once the treatment pathway has been agreed things get into a rhythm and you will k ow where you are heading .  My brain was in a complete whirl for weeks and weeks before I saw my Oncologist (but had been started on HT immediately as my PSA was very very high).  My daughypointed me toward the Headspace app and I have really taken to it - meditation was not on my horizon after retiring but neither was PCa! It is about £50 a year, and the Coping with Cancer course was helpful in managing “thoughts”.

i also found the Toolkit from Prostate Cancer UK very helpful - a monster info pack covering most areas of concern.

Whilst up in the stirrups during my biopsy I was asked what I did before retiring, so I mentioned I used to work for NHS England- and then said “is now a good time to tell you I worked in Professional Standards?” - luckily it all went well and my brilliant surgeon kept his promise of “no pain”

All the best 

KrisPy

Hi RichE hmmm.  I’ve read your bio (nicely and lightly written).  With your stats, you may want to consider brachytherapy boost (you can be referred for this) as it hits it hard locally and widely in equal measure.  Have a read of my bio for details.  Good luck,  AW

PS - writing this on the transfer bus from Dolomites to Innsbruck - dropping off one set of clients and picking up another.  Hard (and immensely enjoyable) hiking.  Yes, there is quality of life after treatment.  Stay positive.  AW

PPS - of course, this advice is valid if the eye socket issue is unrelated.  AW

Hi RichE , we all initially beat ourselves up with what if and why me, but really it does no good.  Just focus on getting through each test until you get a full diagnosis.  Please have a read of my bio, hopefully you will realise that even with an incurable diagnosis, life can go on for years.  I would rather not have had PCa but I consider myself to be lucky.  I’m still here!  Good luck with the scan.