Chris J's Journey

Be brave, my friend - you can always ask for the 1 month cartridge rather than the 3 month, and stop if you hate it too much.

Reading your post has prompted me to arrange a PSA test. I have decided that not having it is not fair to those I hold dear.

Take care

Bri

Gutted for you having to make this decision. Think I'd be in the try hormones knowing you can stop if you want camp.

Thanks again for all your advice over the past few years.

Good luck whichever way you go.

Cheers

Bill

Hi Chris, it’s funny but for some reason you came into my thoughts today and I recalled you saying you see your consultant around now. 
Hope that you get all the answers you need to make your difficult decision. I suspect, knowing you, you won’t leave till you get all the answers.
One day hopefully they’ll find something more targeted than the current HT treatment for future PCa sufferers.

I have 3 weeks till my next PSA & T tests. Hoping the PSA rise isn’t as great as the last time. HT seems to be taking forever to leave my system so looking forward to next Jan when it’s a year since it should have started to wear off.

Best of luck.

Phil

I really feel for you Chris although I can’t imagine what your going through.

I have to say I’ve not enjoyed my time on HT but...and it’s a big but, I didn’t get the physical issues much at all - still trained hard and ran a Tough Mudder. My real issue was my head, but for me it was mainly to do with past trauma resurfacing and me having to deal with that and understanding how it had affected me. And with the help of my counsellor I think I’m getting there.

So I personally feel you could stand a chance of not really noticing the HT. My libido did slip a bit but didn’t disappear completely. But a lot of that is to do with what’s in your head at the time.

I’d say give it a chance. You may be fine on it. 

Phil 

As a newbie I cannot not offer any advice but wish to send you a positive virtual hug and love especially for your kindness when I first reached out for some advice for my OH.

Feeling sad at your news 😢 

Kind regards 

Moozel

I’m not brave nor a coward , I’m not an inspiration ( Irun is !! ). I am a thinker , well educated and a bit of a risk taker.

I’ve actually not wanted to post for fear of unwelcome comments, but felt this huge thread needed updating.

Not once in this 5 yrs post op have I had the luxury of a tiny psa nor a glimmer of hope cure-wise. Even the much refused SRT was always explained as unlikely to be curative , so I took the QOL path and have no complaints that the last 5 yrs have been a great adventure for us all. And the nicest little job as school caretaker that I’ve ever had ( but just decided to hand my notice in ).

So 5 long years of watching my psa go stupid , at least 6 CT and Bone scans and 2 PET scans , all with nothing to show until recently. A true case of micro-mets for sure with last psa months ago at 440.

I’ve had a bit of a cancer bomb go off inside me this last 6 months. Multiple spine , rib and a hip met. Two large abdo lymph’s which have decided to travel to clavicle and a lung also.

It’s been 2 weeks of long talks with Onco , GP , specialist nurses and hospice councillor. At this point you realise just how specialised and empathetic and supportive all these people are and how neutral they are with no pressure. My GP is director of palliative care at a local superb hospice and has already secured me a place there and counciling within a week. He’s known me 8 yrs solid and my 28 yr history of mental struggles and bipolar. Seeing the state of me at the moment he feels we should treat me and my fears and wishes , rather than just the cancer. Most councillors say there is no right nor wrong and that you have to make your own decision. Ultimately you aren’t responsible to anyone nor have to justify yourself to anyone. The buck stops with you.

A close friend lost his wife to breast cancer. He told me at the end she wished to hell she hadn’t had all the treatments and felt she had just wasted time ill and depressed , and all the blue lights and pointless invasive procedures sounded horrible. I asked my Onco to his face if he thought I was a tit and he laughed really loud. He said he way preferred a challenge with an educated couple rather than someone who just did everything he was told.

In the next few weeks I’ll be getting a large single palliative dose of RT to ribs and spine which should cleanly end all this griping pain I have. Other than that I’ve stuck to the plan. No HT and chemo not available anyway. Big family holiday booked and hopefully some lovely trips with my wife over the next year. That’s what I love most.

Sorry for the epic diatribe

Love and wishes and support as ever to all going through this

Chris

Chris, I have followed your posts since I joined the forum. I had no idea about this forum when I had my surgery in July 2015. But when the cancer came knocking back on my door I found out about it and I feel since then I have gotten to know so many wonderful people.

I have followed the path of maximum intervention which has left me with side effects that I’d rather not have but I am still ok with my choices, although I sometimes wonder.....

You, on the other hand, have chosen minimal intervention. Both of us have made these choices as is our absolute right to do so and I hope people respect that.

It sounds like your GP, onco and other professionals are rightly treating you as a whole rather than dealing with the cancer alone. They sound amazing and very supportive.

Only you would ask an oncologist if he thought you were a tit! That made me lol too.

I presume your cancer is still hormone naive so HT might help at some point to relieve pain.

Enjoy your forthcoming holidays, love and best wishes to you and yours too.

Ian

Hi Chris, 

Just want to send you my good wishes.

I'd also like to extend this to your wife. 

As the wife of a lovely man with advanced prostate cancer, I know that some times being strong is the only option you have got. 

You are making the right decision for you and I admire that a lot.

And yes you absolutely are an inspiration! 

Edited by member 04 Sep 2020 at 12:25  | Reason: Spelling

So much admiration for you Chris. Glad you are having the RT for the pain and you are an inspiration. It’s good for people to read that at the end of the day they are in control of all decisions as your onco says for some the automatic reaction is to do as they are told without even being aware they can take control.

Have a wonderful holiday Chris

A is literally just out of theatre, you will never know how important it has been to me to hear from the few QOL proponents of which you are of course one.

Big hug

Clare

Wonderful post Chris. I hope I never have to make the choices you have had to. Thanks to your posts if I do have to make that decision in the future, I will be able to see the arguments so much clearer. I consider myself well educated and intelligent, but your decision is about the highest decision anyone can make, even a doctor of moral philosophy would be stumped.

Congratulations on the last five years, I hope the RT does its job for a while longer, I hope you can find other treatments which can give you a good balance of QoL over the next few years. Keep posting. Big hug (I know we are big tough men, but everyone deserves a hug) 

Chris, I am a bit embarrassed that you see me as an inspiration as that is what you have been to me from day one of reading your posts. You have always seen it differently to me and been strong in your course,  I have been equally strong in mine , when all is said and done the best one is the one that you or I feel in hindsight was right for you (or me). 

My respect for you is immense and I hope with all my heart, soul and strength that you have the best of times now and for as long as your destiny allows. I wish we had met in person as I know you would have challenged my thought process for the better.

fingers crossed for you that the good things grow and the bad things slow.

take care my friend

kev 

Hi Chris

As you know I have always admired your decision to do it your way, especially when you cannot pin down where to target the treatment. I am pleased that you have accepted RT to the bones as I know from bitter experience it is extremely painful, is it SABR or palliative? Have you contemplated trying HT such as Firmagon which you could come off if it doesn’t suit. Whichever way you decide to go you will always have our support and respect.

Take care

Roy

Best wishes,

Chris

Saw consultant who reviewed last scans and said I need 3 separate treatments instead of the one ( already outside my comfort zone ).

High back EBRT 8gy

Low back EBRT 8gy

Possible rib IMRT

Then had plan scans and tattoos ( in the club )

Then back to consultant and told things progressed quite a bit since last scans 6 weeks ago. Been given oromorph and antiemetics for tonight.

Not feeling my best if I’m honest and breathing has been laboured a bit recently. He’s gonna chat with my Onco.

Anyway still the right way to go he feels and this will help me , but I’m feeling things progressing quite rapidly.

Gulp