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John Ledwood and Sue live in England. He was 61 when he was diagnosed in February, 2010. His initial PSA was 47.00 ng/ml, his Gleason Score was 8, and he was staged T3a. His choice of treatment was External Beam Radiation+ADT. Here is his story.

I finally went to my GP when I realised that my dribbling was not going away and was not just down to getting older. He didn't like the feel of the prostate and referred me to a urologist who having conducted a second DRE (Digital Rectal Examination) said he was 99% certain I had prostate cancer.

Biopsy and MRI scans showed I had Gleason grade 8 and one pelvic lymph node involvement. "You have had this cancer for the last 10 to 15 years why didn't you come to see us sooner?"

That was around a year ago and I was put on hormone therapy straight away (Zoladex 3 monthly injection) followed by radiotherapy to the entire pelvic area. My PSA is currently less than 0.1 and I am continuing with Zoladex for another two years.

This seems to be the standard treatment in the UK for my age and stage and it is annoying that there is no routine test for men at 50 unlike in the U.S.

I feel more tired than I would like and of course have completely lost my libido so sex seems to be a fond memory somewhere in the back of my mind!

The thing that occupies me most is how long I may have, five years? seven years? less? [I have tried to cover some of these aspects in The Elephant In The Room. There can be no certainty with this disease, but from what John has posted and the way his PSA dropped, it seems very unlikely he will leave us in as little as five years and that he is likely to live out his normal life expectancy, as do most men with a diagnosis of prostate cancer.]

Glad to have found this site as it helps to share experiences. I have a blog which some readers may find interesting.

UPDATED

April 2012

Hello again,

I am continuing with three monthly goserelin (zoladex) injections and as yet there are no signs of the disease becoming castration resistant. The hot flushes have diminished in intensity and are much less frequent now.

The ongoing total lack of libido has become less of an issue despite my sex life becoming non-existent. I will be having another PSA test in the summer so fingers crossed for that. With stage three cancer there are not many options after radiotherapy other than hormone treatment. I have come to realise that life is more important than a sex life and so long as you have an understanding wife then life can carry on relatively normally.

UPDATED

June 2013

Greetings from the Isle of Wight. Now coming up to three years on zoladex/goserelin and PSA is undetectable. My urologist has suggested a break from treatment to see what happens with more regular tests and then back on the injections if the PSA starts to double. A bit of a break from treatment will be very welcome.Good luck to you all out there.

UPDATED

July 2014

Having been on hormone therapy for 3 years (following radiotherapy) I came off treatment about 13 months ago. Quarterly blood tests show no measurable PSA at the moment (next check is August). This is great news but there has been no recovery of libido or interest in sex. I just live 3 months at a time now between blood tests but am extremely grateful that I have not yet progressed to stage 4! Good luck to you all out there guys!

UPDATED

September 2015

I have just had my blood test showing that my PSA is still undetectable. It is two years now since my consultant suggested a break from hormone therapy and so far things are going well! There has been no return of libido despite the fact that the effects of the hormone therapy must be out of my system by now?

UPDATED

October 2016

Another year gone and I am now discharged from consultant care to my local doctors surgery. Tests are being carried out every six months and PSA still undetectable. No treatment at the moment. Despite suspending treatment there is still no return of libido but I have got used to it and I am enjoying being symptom free.

UPDATED

November 2017

Continuing the same as the last update. PSA still less than 0.1 and no symptoms. Ongoing loss of sexual interest that has not returned despite having a break from hormone treatment for the last couple of years. My wife is very understanding so lack of physical intimacy is not affecting our marriage. Six monthly blood test to monitor does always feel like Sword of Damocles waiting to be told that PSA has started to rise again but so far it is still undetectable.

John's e-mail address is: js.ledwood AT gmail.com (replace "AT" with "@")


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