prostate cancer

Sorry I can't help with your question as I opted for RT and am almost halfway through my 20 sessions. I met someone in your position on Wednesday last week at the Prostate Support Group in Maggie's Centre Glasgow. Strangely his name was also Terry. Could that be you?

not me seamus, I am at the other end of the country in devon but thanks for your reply

Hi Maverick

Sorry to hear of your situation.  I could be wrong but I think it unlikely that someone will post on here in your predicament.

Obviously you have your reasons for not wanting treatment but most people with  locally advanced PC would want  treatment of some kind, it is still manageable after all.

Best wishes

Steve

Hi Maverick, sorry you’re in this position.

As Steve has said you will have your own reasons for turning down treatment.

That is ultimately your choice but I thought I’d share a conversation I had in June 2015.

I asked my specialists what would happen if I decided to do nothing.
I was told because my cancer had probably been there for many years and was on the edge of he capsule I would die a horrible painful death in the next few years. I was also advised doing nothing was not really a sensible option.
As it turned out it had escaped the capsule but the discussion was enough to make me choose to have treatment, radical prostatectomy. Do I suffer side effects, yes. Particularly because I have had the operation, salvage radiotherapy, and hormone therapy. 
I still worry that because the cancer came back I will not make old bones and could still suffer a painful death, but I’ve done everything I can to try and deal with it. But in between these thoughts i am enjoying life, walking,reading, playing sport, going on holiday etc.

hiya buddy, I like the honesty in your answer and have to say that I am fully aware of the consequences and am prepared for the final outcome.

however, it would be nice to try and understand what is likely to happen next and share my symptoms of which there are many, with someone in the same boat.

then perhaps I could stop driving myself crazy

many thanks for your answer

Hi Terry,

I have two more weeks in  Glasgow and will try to locate him again and try to put you in touch. He told me he was diagnosed in 2011 and has held it at bay since then without treatment. I don't know any details of what he has done, but it obviously worked for him.

thanks seamus buddy, much appreciated

hi terry 

i'm a similar diagnosis gleason 9 (5+4 ) spread to pelvic lmyph nodes and a spot on my pelvis and rib .

my psa was 51 , inoperable and incurable although i knew i had cancer i wasn't prepared for how bad it was !! .

basically i had no symptoms apart from the weak bladder stuff it was only when i mentioned this to my gp along with a suspected hernia that was wrongly diagnosed , did he send me for a psa test then do the dre which he didnt like the feel of !!. 

so in the space of a month my whole outlook on life was turned upside down to put it mildly !! 

if my cancer wasn't so aggressive i might have tried some natural way to cure it ie fasting cure .

but i've started hormone therapy tablets and injections and had two lots of chemo so far .

had a few hot sweats and losing my hair from the chemo , but apart from that i'm fine working as normal and i'm a self employed gardener so its not light work ! going out walking as well no loss in energy levels or fatigue .

my psa has dropped from 51 to 1.7 in 6 weeks , taking cbd oil , drinking green tea , eating loads of salad, tomatoes and cherrys .

whatever ur reasons for not having any treatment i hope it works out for you terry .

Hi Terry,

Its great that you've posted your story.  A quick check of my profile and I think we are about the same really?

So, had all the tests done just like you, lots of fingers up bums and all that, and was put on treatment with virtually no input from me.  It was all decided so by the time I arrived for my first zap of radiotherapy, all I had to do was sign the consent form.  But I dug my heels in and asked some questions which miffed the consultant and she became less than agreeable.  One of my questions was, "How long am I likely to live with radiotherapy and these 'orrible 'ormones?"  "I can only give you a rough estimate of at least 5 years but very likely much longer."    

"Ok and if I refuse all treatment?"  "About 18 months."  Then she sat and stared at me for a few seconds as if willing me to dare get up and walk out.  So I had the treatment.  And for me at any rate, the radiotherapy was not so bad but it was 3 years ago and time helps you forget exactly.  But I have not forgotten the 'ormone grief.  So instead of 3 years, I stopped at 2 years for my holidays.  The 'ormone stuff was terrible with all the listed side effects and the worst of all, the depression.  So now I have been on this 'ormone holiday for 16 months and all side effects have gone for a while now.  Its bloody great to be almost 'normal' again.

Well, when I say 'normal', apart from the loss of 2 inches from my todger - NO ONE TOLD ME ABOUT THAT POSSIBILITY - and dry orgasms (that was omitted too) I am as near to where I was before treatment.  Currently my PSA has stabilised at 0.7-0.8 so I should be ecstatic. Who knows, I may even be (dare I say it?) cured.  There, said it now. 

But and its a big but.  What if the next or subsequent PSA is over 2?  I have to go back on those bloody awful 'ormones.  I really don't think I can face that again.  Also, the hospital has been a disgrace so lost interest with them.  What I am trying to say is, had I known then what I know now, I would probably have made the same choice as you have.  Quality of life is very important and 18 months to 2 years (or more) would be preferable to this waiting game for the C to return (as it surely will) and our obsession with PSA results.  

I wish you all the luck with your choice.

We have a man in our prostate cancer group who has refused all treatment for Stage 4 prostate cancer - spread to lungs, pelvis and brain.  He has taken cbd oil for quite some time and it seems to keep his PSA low.  His consultant won't believe him so he stopped taking the cbd oil for 3 months and his PSA went up.  He is now back on the cbd oil and doing well and his consultant still will not believe that the cbd oil is what is making the difference.  So, always worth a try.