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Chris J's Journey

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User
Posted 28 Jun 2018 at 17:17

Good luck for tomorrow Chris.


Roy

User
Posted 28 Jun 2018 at 19:09
All the very best wishes for tomorrow from me Chris

Cheers

Bill
User
Posted 29 Jun 2018 at 14:14
Thanks for kind messages. Awfully stressful day again as you all know for yourselves. Yes PSA raised to 38 but all other extensive bloods clear. He asked how I was and I told him physically ok but emotionally a wreck.
He knows my bipolar history and my wishes for QOL above all else. He can still only offer RT and we know I have margins on my bladder , but we still agree the maths show it’s unlikely to be cure. And we know I desperately don’t want it anyway , and can’t face the potential risks. Given my melt-downs caused by all this he his happy to leave me six months to live love travel and basically enjoy recovery from surgery to the full. Then more scans and bloods again.
I expect opinion will be wide ranged on here but it’s my choice now. Am I mad , brave , weak , tired , scared , nervous , ignorant, nonchalant?? Yes all of those in equal measures.
Have a good weekend all in the lovely sun xx
User
Posted 29 Jun 2018 at 14:40

Hi Chris, I’m so pleased to read all your other blood markers are good.


That will be a massive relief.


As you say the decision is yours And RT is unlikely to provide a cure. It can slow things down a bit though, but QOL isn’t fantastic and since you want that above all else then who am I to try and discourage you. 


You will know I have opted to throw everything at this monster having had surgery in 2015, HT since end 2016 and salvage radiotherapy last spring. I won’t know whether this has worked until I come off HT early next year.


If it hasn’t then I will have dealt with a whole range of side effects that haven’t been necessary.


It’s such a difficult choice. I would still probably throw more at it if I had to but have to admit I would be thinking very carefully about any decision on further treatment.


When are you being scanned again?


Meantime enjoy the fantastic weather and your good QOL.


Best wishes, Ian.


 

Ido4

User
Posted 29 Jun 2018 at 14:52
Hi Ian
End of December will be CT and Bone scans again. At least PSA didn’t double this time !! With the help of PCUK nurses and advice , and taking into account pre-op psa , post-op psa , G9 , doubling time , lymph spread etc , that SRT was highly unlikely to be cure. I think it was 18% chance actually. Good luck and I admire everyone on here whatever their decisions. I hope your treatment works
User
Posted 29 Jun 2018 at 16:57
Chris
It seems about the best results you could realistically have hoped for. I totally understand your conviction in sticking to your QOL first philosophy and admire you for it. Thanks for sharing your journey and previous advice and opinions.
I hope you enjoy the next six months, get good results again, enjoy the next six months, get good results, enjoy the next six months, etc. etc. You know what Im saying.

All the best of luck to you

Cheers

Bill
User
Posted 29 Jun 2018 at 17:33

HI Chris


Good to see that the results were better than you anticipated and that you now have a six month 'break'. 


I hope that you will just enjoy the nice weather and be able to put the PCa on the back burner for a few months so that you get to enjoy the QOL that all your efforts are aimed at.


All the best


Kevan 

User
Posted 29 Jun 2018 at 18:30
Chris

You're doing very well of making the best of life you can from current circumstances. Perhaps it's too much to ask Father Christmas will present you with an equally good set of results and more - but you never know.

Good luck going forward

Ray
User
Posted 29 Jun 2018 at 20:28

Your choice, Chris and your take on an illness that is out to get us. Whatever, I wish you all the best and hope that your strength of character will give you every chance to combat the illness in the future. As you say, let’s all relax and just enjoy the wonderful weather we’re all experiencing at this time.

User
Posted 29 Jun 2018 at 23:45

Good choice Chris, you are inspiational as ever..  

User
Posted 03 Jul 2018 at 09:12
Enjoy the summer Chris take care Andy
User
Posted 03 Jul 2018 at 19:10
You are doing well Chris,

A decision not to do something is still a brave decision.

atb

dave

All we can do - is do all that we can.


So, do all you can to help yourself, then make the best of your time. :-)


I am the statistic.

User
Posted 08 Jan 2019 at 13:39

CJ


Hope you get some positive answers and a plan at tomorrow's meeting with your onco.


Best wishes.


 Thanks Chris

User
Posted 08 Jan 2019 at 15:49
Thanks Chris. Been discussing at length with El today. Psa is up to 82 from 38 which was six months ago. Not sure about other bloods. Not sure I want a plan tbh. I’ve done nothing but think about it this last month. I’m desperate not to have RT , desperate not to have HT I’ve recovered so well. I know what the other option is but frankly want to be left alone. My life is good and rich in many ways , but plagued by worry and depression and stress and booze also. Being bipolar makes it impossible to reach a decision. Is it ever acceptable to refuse treatment ?? I have so far.
User
Posted 08 Jan 2019 at 16:47

I will be thinking about you tomorrow Chris. The worry leading up to these appointments is difficult especially since your psa is up to 82.


Ian

Ido4

User
Posted 08 Jan 2019 at 16:49
It's always acceptable to refuse treatment, key is that you are making an informed decision.

You are an inspiration for this site Chris so I hope you get some good news soon...
User
Posted 08 Jan 2019 at 18:31
Thinking about you tomorrow Chris. You will do what’s right for you. You are a real leader and have touched so many lives with your pioneering and willingness to share and support your experiences.

A real legend in many respects but esp for being open in a world where things are often ‘taboo’.

User
Posted 08 Jan 2019 at 19:46

Chris, will be thinking of you tomorrow.  


Ulsterman

User
Posted 08 Jan 2019 at 20:02

Chris, 

I'm not qualified to offer you any advice....but I'll be thinking of you tomorrow matey ... 
I'm sure you'll be well supported by those close to you, whatever route you take ..if any 

Best Wishes 
Luther 

User
Posted 08 Jan 2019 at 20:08
Wishing you the best clarity for making a decision you're comfortable with. And many thanks for all your input over the years so far, I'll look forward to many more.

cheers
Graham
User
Posted 08 Jan 2019 at 20:16
It is acceptable to choose not to have treatment as long as that is an active and considered choice.

I am hoping that they will agree to more scans rather than try to persuade you to take action based on an ill-defined hypothesis :-/
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Jan 2019 at 11:15
Thanks all for kind wishes and words in advance ! I guess I’m becoming a bit of an old-timer on here !
Saw consultant today. Psa 82 , he didn’t mention other bloods so prob ok. Ordered a full CT and full bone scan and see him next month exactly. Mainly due to no scans for 9 months but obvious advancement somewhere. I asked about a PET but he would only agree to that if I accepted RT to my whole pelvis. I guess that is a cost thing and a NICE guidelines thing ! Essentially my next step would be the RT which I’m adamant I’m not having without evidence. I am aware I have margins down there but they agree prob not producing that much psa. Anyway he said he hoped and even expected the scans may be clear , and in that case he would give me six months again to live my life and fortunate QOL for which I’m eternally grateful.
I guess in my case we are just going to wait till it metastesises somewhere as a tumour and then deal with it then and discuss whether I have HT etc. He said why enter into any conversations until we actually get there. He’s correct of course but still very scary , especially for someone like me whose mind never switches off. I’m just praying clear and then 6 months freedom. Thanks for all your support xx
User
Posted 09 Jan 2019 at 11:52
I believe you said that you were expecting a PSA of >100, Chris, so 82 is a little better than anticipated? What's the objection to HT, as a matter of interest? Is it you or your oncologist who's declining it?

I wish you all the best for the future,

Chris
User
Posted 09 Jan 2019 at 12:00
Given consistent doubling time it should have been 150 ish. They won’t prescribe HT until there is visual evidence of distant spread. However I am T4 as had 5 lymph nodes cancerous at surgery. I’ve had every scan going. Sadly I’m terrified of HT and what it does to a man. I’ve returned to full function in all ways post surgery, and shallow though it may be , I don’t want to become a monk mate. My mental issues wouldn’t be able to cope I’m quite sure. But who knows ? I’ll decide then
User
Posted 09 Jan 2019 at 14:38

Hi Chris , I also send my best wishes to you and hope you can find a way to deal mentally with all the decisions you have to make , either now or at some time in the future. God i have my fingers crossed for you every time you have a test.


Its funny but you have given me some good advice over the past year on my journey and some of that was , i think , not to overthink the future smile was that you ?


None of us has it easy but being a bit of a pioneer on your chosen route must have been very difficult.


You are an amazing individual and i respect your knowledge and decisions immensely . Not forgetting your obviously supportive family. Keep up the good work and know that we are all behind you whatever decisions you decide to make.


By the way if i had a choice i wouldn't have the shitty HT either. My brain is mush and is hurting from all the stuff going on inside. i have 10 months left ( i hope) and i am counting down the days .....


Phil

User
Posted 09 Jan 2019 at 14:48

Originally Posted by: Online Community Member
Given consistent doubling time it should have been 150 ish. They won’t prescribe HT until there is visual evidence of distant spread. However I am T4 as had 5 lymph nodes cancerous at surgery. I’ve had every scan going. Sadly I’m terrified of HT and what it does to a man. I’ve returned to full function in all ways post surgery, and shallow though it may be , I don’t want to become a monk mate. My mental issues wouldn’t be able to cope I’m quite sure. But who knows ? I’ll decide then


HT side-effects seem to vary drastically from person to person, Chris. I've been lucky and had almost no significant side-effects from bicalutimide (other than the suppression of libido one would expect), but there again, I'm a single man and sex doesn't play a big part (well, any part, if I'm honest smile ) in my life. I completely understand that for many men it is an important part of life. You need to make the decisions that are right for you, which clearly you have done, and I respect you for doing that.


All the best,


Chris


 


 

User
Posted 09 Jan 2019 at 20:24
Everything crossed that the scans are good Chris and you have another 6 months focussed on QoL

Bri
User
Posted 10 Jan 2019 at 09:27
Good luck with the scans Chris, hope you get the next six months treatment free as you hope, then the next and then the next etc...

You have been extremely helpful to me and others in what are normally taboo discussions and I am inspired your resistance to treatment without anything to target. So thanks for that.

I so far have undetectable psa following RARP almost two years ago but with extracapsular extension there is a fare chance of reccurrence. If if it does reccur I too will resist scatter gun RT to the prostate bed without something to target as I already suffer with IBS, fissures, heamaroids uranary frequency and urgency, ED etc and fear making things worse.

All the best

Cheers
Bill
User
Posted 10 Jan 2019 at 10:16
But your situation would be different Bill. If your PSA started to climb at some point in the future, you would be demonstrating classic pattern of a small recurrence in the prostate bed for which salvage RT would be highly likely to be successful. CJ was in a completely different boat - his PSA never went down , which is evidence of remote clusters or micromets.

John's PSA was undetectable for a couple of years but then started to rise; salvage RT/HT 6 years ago seems to have sorted it out. The same goes for many others here. That pattern of recurrence should not be compared to CJ's situation.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 Jan 2019 at 15:22

CJ


Just going to say best wishes and keep going mate.


Thanks Chris

User
Posted 10 Jan 2019 at 17:36
Lyn, thanks yes I get all that completly. All rhetorical at the moment as My psa is still undetecable. Next test first week of Feb. I dont want to hijack CJ's thread so will elaborate on my thoughts in another thread.

Cheers
Bill
User
Posted 01 Feb 2019 at 13:06
What a horrendous last week !! I’ll find out if I have advanced spread next Wednesday coming. Trying to keep it cool outwardly but inside sh***ting proverbial bricks. Last Friday’s bone scan took 6 hrs in hospital as one of the scanners broke down. Sat in waiting room with an end-stage guy who’d finished Radium 223. Was horrendous watching him trying to walk , move , cope with it all. Then this Monday my full body CT. Again ending up much longer taking 4 hrs. The Oncology scanning suite is a very sad place to be. Scans constantly being cancelled due to very ill people being brought down which just brings it all home to you. My heart is in my throat permanently , my psa 82 ,and surrounded by stress. Hoping for no bad news , yet even good news only prolongs the inevitable waiting game. Feeling a tad peaky. Have a good weekend all x
User
Posted 01 Feb 2019 at 13:37

Hi Chris, i really hope you get some good news mate, you deserve it.


Will be thinking of you.


I am running Tough Mudder in May to raise some more funds to help us defeat this shitty disease. I have a lot of support and there are 10 in my team. I think they all understand more about PCa now than before I was diagnosed.


Fingers crossed for you, you are one of my hero’s on here.


Phil

User
Posted 01 Feb 2019 at 14:20

Good luck next Wednesday, Chris - will be thinking of you. Your spirit and strength of character has been an inspiration to us all and long may it continue.


David

User
Posted 01 Feb 2019 at 16:47
Chris, good luck on Wednesday. With your history, I wouldn't be surprised if you have micromets which don't show on the scans. In this case, surely systemic treatment would be required? I know you have a thing about QOL but surely you'd go for life rather than its absence? Plenty of options available, a few of which I've had. Keep the faith.

Ac
User
Posted 01 Feb 2019 at 17:42
Your doing well to hold it together Chris.

You've givin so much advice to me and others here I wish I could return the favour but all I can do is wish you all the very best of luck with your results.

Cheers
Bill
User
Posted 01 Feb 2019 at 18:01
Good luck for next week Chris. Perhaps a couple of slurps to ease those jangling nerves

Stay strong mate

Bri
User
Posted 01 Feb 2019 at 18:37

Good luck for next week Chris. Will be thinking of you.


Ian

Ido4

User
Posted 01 Feb 2019 at 19:05
Ac , rumour control has it that if they have never visually seen evidence of distant mets, and that you have refused the next obvious NICE step eg SRT , then you ain’t getting no very expensive systemic treatment like HT or Chemo !! Yes I’m full on QOL which may be my downfall I guess , but unless they show evidence then I’m not having my entire 51 yr old recovered pelvis area spattered with RT. I think we’ve agreed symptoms will steer me now , and in that case then I guess I’d clutch at anything. Some men on here have tried castrate level HT and come off it , but maybe with much lower psa and after SRT. I know that you think you may know me , and I’ve been So grateful for your input to everyone over the years , but you know I may pick demise over existence rather than life as I see it. As I said the other day , the man I met was in so much pain he was just trying anything and everything, but his wife said he was all done with it at 71. No one likes pain. Nasty nasty slow-burner disease this that eats at you mentally and physically I guess. Some of us are stronger than others ....
User
Posted 01 Feb 2019 at 20:10
Nice to read the you are still controlling your destiny Chris. Courageous.

Good Lad.

ate

dave

All we can do - is do all that we can.


So, do all you can to help yourself, then make the best of your time. :-)


I am the statistic.

User
Posted 01 Feb 2019 at 20:46
Your support and advice is so valued Chris, for that I thank you. It’s sometimes hard for people to allow you to do what is right for you, what ever that might be. Your support and care reminds me of the term. The wounded healer.

It’s not just what your born with,
But what you choose to bare,
It’s not how large your share is
But how much you can share,
It’s not the fights you dreamed of
But the ones you really fought
It’s not just what your given
But what you do with what you’ve got.

From a song by Si Khan
User
Posted 01 Feb 2019 at 21:15
That’s lovely Leila.

CJ, jangly jangly ... you know your own mind and what you are or are not prepared to tolerate. However, as things progress do keep in mind that avoiding treatment does not mean avoiding debilitation; your experience as a carer tells you that.

Out of interest, would you have chemo if it was offered as a stand-alone treatment? I suspect that you would refuse that also, although Bazza has surprised us all by going for it despite his fears.

Also, have they ever actually tested your ALP to judge whether there is any bone activity that is just not showing on the scans? Something to ask at the appointment perhaps?

Lyn x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 01 Feb 2019 at 22:11
Lyn, hi , “ jangly jangly “ ? Hope that’s not a poke lol. I’ve had multiple liver profile tests including this last time. I believe that includes ALP and ALT ? Funnily enough they’ve not even picked me up on boozing but guess they can’t be bothered.
Not sure what I really want Lyn other than desperately not for life to change. It’s as though I forget the monster inside me and it’s capability , whilst at the same time waking and settling with it each 24 hours. I just see the futility of fighting it at a certain stage , although it’s not caused me pain yet. I get the debilitation totally but it’s just a case of putting it off for another day , not beating it ?? And I know I have my responsibilities to everyone , but some would argue I wasn’t much fun to be around before cancer , never mind with cancer , and certainly not with cancer and castration.
Just doing the caveman thing. Each time life changes I break a little bit more :-(
User
Posted 01 Feb 2019 at 22:23
I don't understand your comment about a poke - does jangly mean something that I don't know?

Wasn't thinking about your liver ... high ALP can indicate bone activity.

Just keep going - you are doing better than you think x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 01 Feb 2019 at 22:40
Standard LFT’s have the parameters of ALP and ALT and AST. Sadly high ALP is both indicative of bone probs or alcohol use or both. So I guess they not sure. But I’ve got questions for sure. Even lymphodema questions. Both my knees are the size of Ugli fruit and some days I can’t walk more than 30 mins. They keep me awake all night. Other days I’m ok. Thanks anyway x I’m so busy the Jan appt then two scans then next weds have flown by.
User
Posted 02 Feb 2019 at 13:42
I wish you all the best for Wednesday, Chris. You've been through an awful lot, and you deserve some better news for a change.

Chris
User
Posted 03 Feb 2019 at 13:05

CJ


All the best for this weeks appointments, we both know what it is like when treatments do not live up to our expectations.

 

Thanks Chris
User
Posted 03 Feb 2019 at 14:49
Chris
I hope your appointments give some positive results and give you some time to think and do other things.

All my best wishes
Paul
User
Posted 03 Feb 2019 at 15:29
good luck for Wednesday xx
User
Posted 03 Feb 2019 at 22:21
Good luck with your appointments Chris and thank you for the support.xx
 
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