1st face to face appointment

Hello Robert1 

Well that's the first meeting over and it looks like you've drawn a blank. I did look on your profile but you haven't told us any of your PSA readings. 

From what you say, she's offered you Active Surveillance or HT/RT.  People have been on AS for up to 15 years but reading between the lines, you want the Cancer treating.

From the Gleason Score the "4" indicates that some of the cancer cells are growing at a moderate rate - to me that means treatment will soon be inevitable at some point so I can see why you want some action.

I would be telling your team (via your Nurse or Consultant's secretary) that you have decided you want the HT/RT and can you start on that treatment path ASAP.

(It's only my personal opinion on reading your posts and looking at your diagnosis - I've been wrong before!!).

Best wishes - Brian.

Thanks Millibob.                                                     That’s my thinking that I’m going to need treatment at some point so I’d rather have it sooner,she’s was saying that there could be some side effects which I know as I’ve been reading up about it but leaving it for them to keep an eye on doesn’t feel right,I had a long talk with my wife and we’re in agreement that treating it early would be better,she ruled out the surgery as I’ve got RA,my first PSA was 4.8,I don’t know what yesterday’s was as after my blood test I was away home

HI Robert1 

Don't worry about the side effects - not everyone gets them all, some are lucky and don't get any. Because of my high initial PSA (182) and the little buggers had almost gone "walkabout" I am on a 3 year HT journey. I am over 2 years down the line, yes I have had hot sweats, itchy skin, I can cry for England, I have the odd "dark moody day", I have erectile dysfunction, I have grown a nice pair of moobs and I have put on weight.

However - I have mastered them all - apart from I can cry at the drop of a hat and believe it or not the ED has really brought my wife and I closer together - we still have fun - you find a way!!

Every time I think "why me" or "why has this happened" I think of those two magic words the oncologist said to me:

"CURATIVE PATHWAY"

So there you have it - it's not as bad as people make out!!

Best wishes - Brian.

my thoughts (I’m not a consultant, so ideas only)

think you are doing the right thing. Excellent chance of cure - tell them to put you on hormone tablets (bicalutamide or similar) - no reason why you can’t start today. About 8 days later you will get your first decapeptyl jab. Both these treatments will stop the cancer in its tracks by starving it of the fuel it needs and it will shrink it (and your prostate gland), making an easier target for the radiotherapy.  The good thing is that this takes all the time pressure out of the situation. Then, about 3 months later you will start your 20 factions.

Think about the AS alternative. What would you do in 6 to 12 months time if it’s 4-3 or even 4-4 with aggressive features?  Note that your biopsy may have missed the worst bits of the cancer and as you already have some 4, it’s not going to go away.  Nor is the worry.

hope this helps.   AW

Hi Robert1,

As the guys said we are not doctors but can speak from personal experience.

In April 2023 my husband PSA was 8.4. We asked the urologist for another MRI ( he had one in 2020 which was enlarged prostate but not cancer.) He Said no, I can reassure you there is no cancer there. We have this in writing. In October 2023 his PSA was 11.8 with fenestride which is consider double and MRI early November shows advanced prostate cancer (see profile).

I wish we could turn the clock back and demand MRI or even do it privately, maybe the cancer would not be aggressive. 

If it would be us in your position we would take treatment. 

It is not simple to demand and put up a fight but this is your body so I hope you will get what you want.

All the best wishes

Dafna from Brighton