Recurrent and now spread....

Good Morning Dave

Thank you for your post - I think you have a similar mindset to me (reading your comment on Dignitas ) as my own thread is called RE: QUE SARA SARA. 

4 years ago my PSA on diagnosis was 182 - yes I am still here, no confirmed spread, can't find the little sods on my latest scan but we are still treating you as after 3 years HT/RT your PSA is 27.5!! It's some ride and I am still technically on a curative pathway!

"Intellectually interesting" is one way to put it - I am sat on that fence between T3 and T4 so I put my trust in my team - life goes on and I am making the most of it. I am 70 still working (when I want), taking 15/16 weeks holiday a year and enjoying life to the full - I know I will die sometime - I hope WITH the cancer not OF it!!

I hate the word "prognosis" - I know you have one , is it right, do you accept it, do you get off the bus now and curl up and give in? or do you make the most of the next say 10 years - who knows?

PROGNOSIS - "the likely course of a medical condition" - "an opinion based on Medical experience".

I hope my "ramblings" help - I know you asked for comments - there isn't an answer because there isn't a question to be answered. Stay positive, take the medication and enjoy life!

Best wishes - Brian.

Hi Dave,

I could have written that myself. I’m trying to settle into a new me, a new normal, that’s more incurable than ever.

Yes there’s the positive view that I have which gets me out of bed and checks my bank balance and wonders what my Darling and I can do that will take us away from the facts regarding my new me. But little happens just yet because I’m too tired.

However, the change from three and a half years of stage 4, Mets in bones “holding back” treatments has changed to “definitely not curable” with few treatments that can help hold the cancer back, with the reality of any chemo treatment which would be started at 50 % in order that it didn’t kill me due to me being so weak, resulting in a big change of feelings towards my prostate cancer.

In the last week I’ve chosen to stop any new treatments and have a break from the continu-arse nightmare of needles, fluids and off the charts PSA scores that are more like days in a year than days in a week that they should be.

My mind is all over the place because of this lack of curable and more like impossible. I’m sometimes and emotional wreck due to the inability to get my head around the big step I’ve climbed without my permission.

I want to start on organising my funeral and I feel it’s a good thing to do. I’m not giving up but I am realistically dealing with stuff I need to.

I wish I could understand what I’m going through. It’s not easy to fathom. I do understand some of what you’re feeling. Good luck 

Thank you, Brian. Were it not for my partner (of 7 years, we were both widowed before we met) I'd very likely not have accepted any treatment. But I told her I would, so I will "keep taking the meds....". She in return accepts that I will not prolong my life just for the sake of it. I think chemo, triplet therapy, would give me longer, but at a loss of quality I will not accept.

The research stats are clear  -  10 years not on the cards, but my COPD will get me much sooner than that.

I seem to have a high tolerance for drugs in general  -  I was a paid up 1967 on hippy! So 24 months possible. 

I admire your approach, continue to enjoy life! 

Regards, Dave 

Mr U, not much I can say to all that, except express sympathy and some understanding  -  all still to come for me. I hope I can remain as strong.

Only positive elements for me are that seemingly not yet in bones and likely not castrate-resistent given rapid drop in psa and testosterone.

Whenever time or extreme weather confine my daily cycling to semi-indoor trainer I have music on the headphones and I'm making a start on choosing music for my departure! Only definite "Magic Bus", Who Live at Leeds, cos I was there!

Keep your early a.m. positivity, best wishes, Dave 

Hi Dave (Carl28 ), great attitude and along my own line of thinking.  I am much younger than you (not 77 until Feb) but have been on an ‘incurable’ diagnosis for over 8 years and still going.  My current state is that I am now in remission after a second spell of RT earlier this year.  Drugs and treatments are progressing all the time and I am sure there will be significant advances in the next few years (if not a cure) for PCa and I keep joking with my oncologist to just keep me going until a cure is found.

Obviously the treatments and drugs have kept me alive but I am convinced that a positive attitude and keeping as fit as possible have been major factors in keeping me going.  I am fed up with being on HT for so long (over 10% of my lifetime) but my oncologist, in whom I have great faith, continues to refuse me a HT holiday, but I keep pressing for one!

None of us know how long we have, with or without PCa so live life to the full.  Accepting my ‘incurable’ status at the start was hard, but now realise that it is meaningless.  It is easy to define someone’s life as born 19xx, died 20xx but the important bit is what happens in the middle, not how long it was.  Keep cycling (just remember not to fall off).

Hello Dave,

Your profile shows remarkable similarities to my experience - same "round 1" RT/HT treatment, although my HT was shorter and my period from treatment to recurrence was 7.5 years. Even my own GP noted my PSA result above 2.0 as "Normal - no action required" - I also checked it and corrected her to get referred back for "round 2". I was a bit younger at 68 so went for triplet therapy which was completed Autumn last year, all OK so far. I do appreciate your reasoning for your treatment decision.

It's certainly strange to hear you're incurable and I wasn't at all sure how to confront this. I was encouraged to know that PC survival is often measured in years, indeed my consultant talked of X years plus an expected X years extra on triplet (one of the reasons I went for that). However, these are just estimates and nobody knows how long.

My history is such that, having faced and so far survived against the odds, another health challenge I was able to put the PC incurable tag firmly to the back of my mind. I agree it is "intellectually interesting" and am a realist but yes, it definitely does present a different mental reaction which is difficult to describe.

Like Brian, I'm simply living life to the full travelling when and where I want to knowing that it'll end sometime but not just yet. That's left to one side to be dealt with another day.

I've found no problems on darolutamide after about 17 months, hopefully you'll find the same. 

My best wishes to you for successful treatment.

Thanks David. Much sense and even encouraging! My exercise is predominantly cycling  -- not good for bone density but keeps COPD at bay, so take your choice...but >5000 miles p.a. for most of last 20 years surely not harmful!

Roll on, regards, Dave 

Thanks excavator. The total misreading of psa in post-treatment patients seems to be not uncommon. Not everyone will look further than NFA, partly of course because that's what we WANT to hear.

My Man has said precisely nothing about survival time  -  maybe he's waiting for my response to double meds and next psa/testosterone when I see him in March. Nor have I yet seen his most recent report to GP and cc me. I certainly learned more from what he put in writing than what he had said after first meeting!

And yes, the bullet with ones name can arrive at any time, healthy or not. Mine's likely to be in the form of a large SUV that dislikes cyclists!

Life is always fatal.....

Pleased I'm not the only one who finds "incurable" different from "we'll try to cure you...."

Good luck, Dave 

Dave,

I would have thought cycling would be good for bones.  Anyway anyone on HT should have a Dexa scan to check density and any problems go for a Risedronate or similar.