Terrified

Well it may have been you and him against the world, but now you've called on our little army of PCUK members you are no longer alone. You are at the worst part of this journey, with very little idea of what is going on. It gets a lot easier once you have a bit more knowledge of your particular case, and prostate cancer in general.

We've all been where you are now, and came out the other side. Though no one can be sure, and PSA is a very unreliable indicator, you OH doesn't seem to have an aggressive form of the disease. An additional scan to check for spread is very common immediately after diagnosis, it doesn't mean they think it has spread it is just standard practice. A PET scan is quite sophisticated compared to the old nuclear bone scan, it sounds like your hospital has a budget to use up, before Christmas.

Get back to us with any questions.

Hi Neet,

Sorry that you find yourself here...

As others have said, it's good news that they've offered a PET scan.  It will help to clarify the treatment options that are most appropriate to your OH's needs.  It shows that they are being very thorough.  It sounds likehe is in good hands.

If you can, it would be good to try to distract yourselves with pleasant activities during this agonising waiting period.

Best wishes,

JedSee. 

I feel for you Neet, all of us on here know exactly what you’re going through as we’ve all been there. My wife’s sister died suddenly just before I was diagnosed and the combination started my anxiety. Then when I started HT the anxiety got to the stage where I just couldn’t function. After reading a few posts on here I went to my GP and was prescribed Sertraline which has been a great help.

It sounds as though you have a very good, strong bond with each and you WILL get through this. You say you are very private people…I thought that too and didn’t want to talk about it but eventually(after much persuasion by my wife!) she talked me into us going along together to our local Maggies Centre for a chat with one of their specialists. And that transformed the way I feel about the disease and helped me come to terms with it.  I go along regularly to group meetings now and always come away feeling better. Not all Maggies are as good as mine I know, but looking around for a local support group might be very good for you both.

Derek

Turkey2222, my RT was delayed because of poor communication between health boards. I ended up on HT for 9 months before starting RT. Not ideal maybe but my PSA kept falling and was 0.9 at the start of RT which the Onco was happy with because they like it to be less than 1.

18 months since my diagnosis.

Yeah it's horrible when you are in limbo land waiting for results. Once you get a treatment plan in place you start to feel in a better place. Good that they are giving you a PET scan, at least you are getting the full diagnostics.

Your PSA level is an unreliable indicator of the disease progress however on balance I would rather have a lower level, no guarantees but chances are you are unlikely to be advanced.

My PSA at diagnosis 8.75

My RARP was a couple of weeks ago, and I was offered either surgery or RT. The medics reckoned that the outcome would be the same either way. I think the treatments offered depend on their estimation of where the cancer is., how advanced it is, and presumably the age of the patient. 

This isn't correct. For a man with a run-of-the-mill curable PCa and no additional health conditions, RP, EBRT, brachy and brachy/EBRT combo will all usually be suitable. Sometimes age affects the recommendation - an older man may be encouraged to have RT rather than RP - but that is certainly not always the case.