A new wife

Hello Cora 

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

The MRI Scan can be a very good start to a formal diagnosis and once the cancer has left the prostate gland - it's normally treated as Stage 4 which is treatable but not curable. The results from the Scan will be either PI-RADS 4 or 5. This shows a clear view and they can see on the MRI the gland has been breached.The good news is that he's started on Hormone Therapy - this will stop any further spread and "put the cancer to sleep".

The full diagnosis will be given to you once you have the results of the PET Scan (I assume he's had a biopsy and you have the results from this).

We have many Stage 4 members on the group - many who have been with us for over 10 years.

If you are to be his main carer you may wish to join this group for help and advice:

Carers only forum 

To help us to help you can you please add his journey details to his profile - to do this on his home page click on the chair - top right then profile and then edit - once you have written something don't forget to save it. (You can read a member's profile by clicking on their name or avatar).

Please do keep asking questions, no matter how trivial, you will get answers.

Best wishes - Brian.

Good morning Cora

I am new to this forum but have been diagnosed Stage 4 since last October.  My PSA was 953 - but after being on HT as part of the Triplet therapy approach (and on my 5th chemo)  I now have an undetectable PSA.  So progress can be made in a reassuring fashion.

It is good that you have found this forum so early on - us chaps rely so much on our other halves and you need as much support, if not more, as we do.  My wife has found it hard but does take the time to speak to friends and family - we do not keep this to ourselves and it is comforting to see how supportive others can be. So keep up the good work and remember it is good to talk (as an old ad used to say!).  

I have found a lot of useful info on the Macmillan site and the Prostate Cancer UK site -such good resources.

Best wishes

KrisPy

Don’t ever panic. Take a few deep breaths and talk to some one. Us, we are available and experienced too. Just done panic. Count to ten, twenty in need be. Tell yourself this is a slow growing cancer and there’s plenty of things that can help both of you.

Ask here for advice. You will be taken seriously. Ask about anything. But try and rest, when you can.

take care

Hi Brian, thank you so much for your reply. It is the waiting that is so hard and the spiralling thoughts... He has had a biopsy, yes. All results have been verbal so far - we were told Gleason 8 and some spread to lymph nodes. I will update the profile and also now know to ask about PI-RAD when we meet the hospital oncologist at the end of May. 

Hi KrisPy - so glad for you that your PSA is down and I hope the chemo is going ok as well. It is so helpful to "belong" to something with other kind people who get it. We have not told family yet - they are quite young in their twenties so we wanted to wait til we knew a bit more.

I am finding the sites you mention really helpful -and am resisting the urge to look at the internet.

I cannot tell you how much I appreciate you responding! Some times I can be quite stoic about it all and hopeful - other times I struggle. From what I read that is really common. I think it will be so much easier to deal with once we know the full story.

Thank you again for replying!!

Thanks Cora

The head spinning and unsettling thoughts are difficult to deal with, and something we have all probably all been through.

One thing I found useful was the Headspace App (which has a fee). This has a "Coping with Cancer" course which consists of relaxation and breathing techniques which I found useful - even yesterday whilst having my BP done at the Cancer Centre!!!

Sounds like a sensible idea to have all as much info before speaking to family - my daughters wanted to know but they are late 30's/ early forties, although we drip fed one and told the other all the gory details! Different folks etc etc..

I was speaking to a young chap at the cancer Centre yesterday and asked him what support/info he was getting and he mentioned Facebook (horror of horrors) so I pointed him to this space and before the end of his chemo session he said that he had had a look, so yes stick with trusted sources.

I also found Headspace APP (which has a fee) really useful - the Coping with Cancer course has breathing and relaxation techniques...

Thank you for the recommendation. will have a look. I think my husband needs to be in a better headspace himself to look at this - he is quite old fashioned when it comes to these sorts of things if that makes sense, but always good to be prepared!!

I was also a bit old fashioned about it when my daughter recommended it to me - but once I got started and got into it it can be really helpful. the first third of the course deals with managing thoughts and learning how to accept and deflect them, moving on. It is difficult but can be rewarding - I'm 68 and an old dog learning new tricks!!!