I am a reluctant newby here

My OH did the STAMPEDE trial and found the extra monitoring on bloods and extra appointments reassuring - so that is worth considering.

A lot to think about at the moment, so take a bit of time with someone who can explain everything and it may not be as bad as it first sounds to you.

Some people are on HT for 10 years plus. Lots of stories on here may reassure you a little.

You need a good onco. Try to get recommendations if you are unsure about yours.

The main thing is that you have caught it NOW and can start to do something about it.

All the best

Alison

Edited by member 06 Nov 2014 at 16:23  | Reason: Not specified

Hi Kev,

I have been following your initial posting I am so sorry that you have received this diagnosis today. We have all been through the feelings and emotions that you are experiencing know. Some on here are more lucky than others ie some are in the cure camp. I hope that you continue to post (If you find it helps you) there is a whole heap of expertise and knowledge on here.

I would whole heartedly echo what Mo has said you need to take some time to adjust and find the emotional support that you will need, either from family , friends or on here or a mixture of all of those. What ever works for you.

There are many men on here with a gleason 10 and hopefully they will come along to give support and advice. Rob has already added about early aggressive treatment. We often say on here that this a rocky road and  one thing about this forum is many men have trodden the road before you and are willing to help and guide you through .

There are only a few of us that have young children on here, mine are 10 and 14 and every parent has there own unique way of handling this sort of situation. If I can offer any advise on this subject it would be to wait until you are emotionally ready.

BFN

Julie X

Sorry to hear the news but there are plenty of tools in the box. I totally agree with Rob, you have to clear up the confusion with the M1, as you rightly say if the bone scan was clear this should read M0, have you seen this in writing or could you have mistaken the word none for the word one, also did they say how many nodes were affected and where. Take time to digest then once your head clears ask your questions and hit it hard and if you want a second professional opinion then don't worry about upsetting people, go for it. You may be only offered the treatments that are available at your particular hospital so your private healthcare may come in handy to shop around but it is ultimately your decision.

Maybe click on this link as it explains I laymans terms Many aspects and treatments regarding PCA.

http://askdrmyers.wordpress.com

A few of us follow his blogs

Roy

Edited by member 06 Nov 2014 at 22:04  | Reason: Not specified

Hi Kev,

First just to add my voice of support along with everyone else. My partner was diagnosed Gleason 10 last year with spread pretty well everywhere. If I could go back to last May, this is what I would have done in retrospect. I would have got my partner the skilled second opinion I sought out in April 2014  by which time the damn disease had become resistant to HT probably months before. The disease is so complex you aren't guaranteed to get the same treatment opinion from two different oncologists and our experience were that some were much more on the ball, aware of new treatments, trials and prepared to offer them than others.

The other thing I always say is never to be complacent about the disease though you need to find that difficult path between enjoying your life and coping with the diagnosis and treatment.

Although scans can not be entirely accurate, a scan three months post partner's diagnosis may have shown the disease was spreading despite low PSA and testosterone on the blood tests. Don't ever be afraid to ask or insist on something if you have concerns, sounds awful having to say that but sometimes it pays to shout !

If I'd known then about the CHAARTED Study, about starting men with advanced disease on chemo and HT instead of just HT when the disease is likely to be resistant to HT at some time, in our case much sooner than later, I would have hassled for the chemo and HT. Hindsight is such a wonderful thing ! You never know the outcome of treatments but you need to feel you have the best and most informed options available. Also , there are men on the forum who have done well, even with a high Gleason score, everyone is different.

In terms of emotional support for me, as a partner, I found the PCUK nurses very good, this community was an absolute lifeline. I have since found Macmillan are brilliant. The health service was less able to understand the strains on us as a couple whereas our local palliative care team were fantastic on that front. Well, these are just my observations.

I hope you will find a path for yourself which is the right one and wish you all the best,

Fiona.

Hi Irun,
the M1 is often linked to bone mets but actually, M denotes any spread to other parts of the body apart from lymph or nearby organs such as bladder so it could be that the M1 in your case refers to these two lumps you said you had on the aorta??? What did the consultant say about that at your appointment?

Told the kids yesterday (age 9,14 and16) lots of tears and hugs but had a normal afternoon. The eldest two live with my ex so I went round there when I dropped off last night and told her too, baring in mind we don't usually speak she was very sympathetic and concerned. I am worried about my oldest as she is the most sensitive and I think gets what the big C is.

Had a better day today although still get upset thinking about all the things I probably wont see or do that I had previously expected to.

I am seeing the specialist tomorrow and as at this time the plan is to just put me on hormone injections 3 monthly and see if he can get me on the stampeded trial I will also ask him about:-

Why no chemo

Why am I N1M1, I get the lymph bit but where else is it (they said the seamen sacks however I thought that was the B bit of T3B ?

Why no radiotherapy

Why no surgery to remove lymph and prostate

Why not Olaparib

Why not Xtandi

If anyone knows the responses to the above ie if I am using Dr Google too much tell me equally tell me if there are other things I should be asking now?

Thanks in advance

Kev

Visit to consultant on Tuesday better, he now feels that going on the stampede trial is not the best option as I may not get the new drug and just be left on hormone injections 3 monthly. Says that at my age and fitness (still running 4 days per week x7miles easily).

Said that we should be more proactive and not risk stampede lottery at my age.

So now zoladex 3 monthly (to replace 3x cyproterone acetate per day plus one bicualutamide per day (says that this is kind of like the stampede drug but not quite so good) then 6sessions of chemo , 1 every 3 weeks starting jan, then when that has finished 6 weekly sessions of radiotherapy.

So I feel that we are doing something, I had a CT scan which confirmed that cancer in all my lymphs but not bones and consultant felt a much better prognosis than the oncologist had originally depressed me with.

I feel happier however no Idea if that is a false happiness, so after any opinions that anyone out there has regarding the suggested action?

Thanks in advance