PC diagnosis and my mind is blown

So sorry Debbie this has happened to your family. Don't despair yet as there are many men on here G9 who have survived a good while and many years. It's rarely an emergency if you get what I mean. Click my profile if you want. I am G9 and T4 and N1 and am only 49 years old. My psa at surgery was 43. In my case they hadn't spotted it was spread already so I underwent surgery and all it's dramas and side effects unnecessarily. At least your hubby won't have to go through that. I often refer to specialists and treatment as a bit voodoo as after being on this site over two years , and other sites , it is plain to see that men with identical stats get treated quite differently in various parts of the country depending on that areas and consultants knowledge , past results , outcomes etc etc etc. I think all specialists only want the best for you and help you survive , yet they ARE restricted by local funding , and if you read profiles and learn as much as you can , it IS worth questioning your treatment and you have every right to do so. I'm currently fighting for a scan that is available , only not in my area !!!!
Stay strong , stay on the forum. Many people far more experienced than me on here and they will help. It can be quiet at weekends though. Best wishes

Hi Debbie

Very sorry you find yourself here but it is the most wonderfully informative and supportive place to be...and everyone will understand what you are going through. Particularly the terror/fear/panic. I think we've all been there (and generally more than once!) This is the tough part - coming to terms with an impossible diagnosis and not knowing what to expect or what the options are.

But there's lots of expertise available: from members who will, I'm sure, be able to answer your question; from the specialist nurses who are superb (you can phone or text or email them); and from the Toolkit that you can download or send for - a series of leaflets that explain all aspects of diagnosis and treatment.

Although as Chris says, treatments vary from place to place and consultant to consultant, the HT plus chemo route is now well researched and evidenced so if it's not being suggested there's probably a good reason. Suggest you ask, and keep on asking if you don't get a clear answer. The response might well be a positive one - if your husband doesn't need it yet that's a good sign.

Either way, hang on in there. It will get less frightening I promise.

Take care.

Eleanor

x

You and me both Debbie! The forum is a lifeline - when it all seems too much to handle this is where I come. Sometimes to rant and howl, sometimes to ask for advice, sometimes to try to offer it.

I know that you are going through hell but you aren't on your own. You'll find the members will be with you every step of the way. And somehow they will even manage to make you laugh. Awesome bunch of people.

Eleanor

x

You ask about a real cure rather than just remission ... they are the same thing. Technically, there is no cure for cancer - not many oncologists say 'you are cured' and in medical terms the word 'remission' means the cancer has been removed and there is no sign of it ever coming back. Many people get remission for the rest of their lives which in most minds equates to being cured. The medics will talk about 'curative' treatment and brachy is one of these. Your OH will be considered in remission if he has 5 years of low PSA after his treatment, and official remission comes 10 years after treatment. My dad got a letter from the hospital telling him he was in remission when he hit the 10 year mark.

The NHS can't afford to waste money on curative treatment for people that they don't think are cureable so the fact that you are being directed towards brachy is a good thing. My guess is that they can't confirm that until after the bone scans have been done, just in case there is any spread. If there are any mets, then curative treatment is off the table.

Your OH is fortunate to be offered brachy; it is quite unusual with your stats. Usual criteria are: small prostate, PSA less than 10, Gleason 7 or less. Very, very unusual to be offered brachy with lymph node involved so it may be that they think the suspicious node is probably not cancerous? Have you asked about IMRT (external radiotherapy) as well?

Edited by member 05 Feb 2017 at 17:51  | Reason: Not specified

Hi Debbie and Caroline,

Just to add to all the replies, it might make you feel better to know that I was also diagnosed Gleason 9, T stage 3a and 3b, and I also had a suspicious lymph node, my PSA at diagnosis was 32.

All of that was back in 2007, I am still here, enjoying life looking after my grandchildren ten years later, and my latest PSA was 0.4.  You can see full details in my profile.

:)

Dave  

Hi Debbie,

There is a sort of etiquette, that we don't name our doctors on this site.

I have total faith in the Professor at Mount Vernon, all of the doctors who have treated me, and the nursing staff who have made my stays in hospital so wonderful, I wouldn't say a bad word about any of them.

But not everyone who posts on this website has had such a positive experience and some would be decidedly non-complimentary about their doctors, so for that reason there are no names.

:)

Dave