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Chris J's Journey

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User
Posted 14 Oct 2023 at 08:02

Hi Chris,

Sorry to hear about your very small rise, hopefully it will just be a blip…and if it is your nadir, we’ll all keep our fingers crossed that it stays at that level. PSA anxiety is so real, I just wish there was an instant test you could do rather than having to wait a week for results. I’m always like a bear with a sore head during that week and just try and keep myself as busy as possible, preferably on holiday somewhere.

Anyway all the best for the future.

Derek

 

User
Posted 14 Oct 2023 at 10:09

Hi Decho

I am afraid the medical profession under estimates the stress and anxiety caused to men when they have to wait a long time for their results. Our surgery is so well organised that most of the time when we have blood tests we can access our test results on its website within 24/48 hours; so it can be done. Unfortunately our surgery does not use a lab which can read PSA better than two decimal places, typically my NHS PSA is 0.06/0.07 whereas if I have my  tests at the private hospital, where I had my surgery, it is <0.003/<0.004.

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 14 Oct 2023 at 11:24

C J, I hope it's just a blip, we both deserve a bit of luck. Keep going mate and thanks for all the support give us on here.

Thanks Chris 

User
Posted 14 Oct 2023 at 21:00

Hi Chris J,

Sorry to hear that, Chris.  As others have said, it might be just a blip, but it's a bummer even thinking that you might have reached your nadir.  It can increase your anxiety (even more than it already is) before every future test: will it stay at the new level, or will it have increased again, and if so, by how much?  In spite of advances in prostate treatments over the years, there is still so much guesswork involved.  Even the medics can't say what is going to happen next, or when.  Living with this uncertainty takes its emotional toll.

I hope you can help to distract yourself from all the worry (and 'what if's') by spending time with the people you love.

Best wishes,

JedSee.

 

User
Posted 14 Oct 2023 at 23:42

Really possible to be nadir Chris and hope it stays there for a very long time 🤞🏼 I know it’s difficult not to worry though. Keep being positive and getting on with life x

User
Posted 15 Oct 2023 at 11:12

Hello Chris, you might have reached your nadir, and you might stay there for some time. A difference of 1 in the least significant digit of one reading is not significant though. I know it still causes worry though, and I hope it stays low.

User
Posted 17 Oct 2023 at 23:20
Hi Chris

I don’t visit the forum very often these days but yours is the first thread I search. You have been inspirational and great to hear your have a 0. In front of your PSA number as I remember how high it got.

You deserve a nadir ( which may bobble a bit) that stays nice and low .

Keep enjoying your family Chris

All best wishes

Clare

User
Posted 17 Oct 2023 at 23:27

Hi Chris, I'm going to recommend you follow your own advice. I read one of your posts from a few years ago, when your PSA was in the hundreds and rising, you said something like "I can't believe other people are worried about a rise of a few decimals", well your advice was good then and it is good now. Stop worrying it's a change in the second decimal place.

Dave

User
Posted 19 Oct 2023 at 16:02

Here’s hoping your PSA is stable for a long time to come Chris. I totally understand how you feel but logically (what’s that got to do with anything I hear you say!) a rise of 0.01 is within the reading noise. Stay well. 

Ido4

User
Posted 14 Aug 2024 at 05:51
Hello each and all. Very aware I’ve not updated my journey for a good while. June 24 saw my 9 year survival of G9T4 N1 prostate cancer which 3 1/2 yrs ago became metastatic to bones and distant lymph nodes. My HT Decapeptyl brought my psa from over 1000 down to a nadir of 0.36. The last four 4monthly psa tests have been on the rise albeit slowly , the last one being 0.51. So obviously a worry and an indication of the treatment beginning to lose efficacy , but my Onco team not so bothered and probably not going to react till it reaches 4. Still have Enza or Abi in the bag.

As you all too well know it’s not easy mentally for anyone , but possibly harder for us incurables. I’m doing well really. Still low side effects tbh from HT , worst being stiffer and stiffer legs which is slowing me down , and quite a bit of fatigue. Weight still good as is mojo 😉.

I don’t post on the forum so much now but have helped PCUK with live webinars and first hand experience, and hopefully shortly will be helping the Movember team personally.

Wishing you all the best out there. I’m still forging ahead with planes and fishing to keep my life and mind clear

Chris

User
Posted 14 Aug 2024 at 06:51

Great to get your update Chris and your positivity gives us all a boost. Let’s hope you can keep your PSA within an acceptable range.

Wishing you all the best for the future.

Derek

User
Posted 14 Aug 2024 at 07:32

Thanks for keeping us updated on your incredible journey. It's always good to read your honest and frank wise words on here. You've given so much good advice on burning issues affecting us on this site. 

All the best.

Kev.

User
Posted 14 Aug 2024 at 10:07

Hi Chris. PSA maybe still rising but very very slowly. So that’s sounds pretty good to me. At that rate you’ll be years before you need Abi or Enza. 

Sorry to hear the legs are still playing up. These damned side effects are a bast*rd. Glad you’re still enjoying the flying and fishing though. Especially as you do both with your son, magic times. 


Yes, emotionally it’s a roller coaster for sure. I even wonder if I’m gonna be around or well enough to use up both our BA companion vouchers …  Some days are worse aren’t they. Last 2 days for me a bit emotional but seem ok today. I’m sat in my chemo chair catching up on my phone stuff 😁.. tea lady a bit late today missing my tea and kitkat 🤷‍♂️

 

Keep up the resistance Chris. We mustn’t let this disease grind us down. 

 

Take care 

Phil

Edited by member 14 Aug 2024 at 10:08  | Reason: Not specified

User
Posted 14 Aug 2024 at 16:08

Well done Chris, I’ve just read out your post to David and he said ‘ well done mate’ he’s sadly has no libido, and he hates that, but his PSA was < 0.1 in July. It’s nine years in September since he was diagnosed G9 Tb3. He gets tired, and has muscle pains most days. 
He writes music, plays, sings, gardens. He interested in economics ,and ,keeps abreast of world events. His latest song has been taken up by a well known singer, so he’s enjoying that. 
David’s 74, and still has a passion for life, and living, though he does find it very hard mentally sometimes. He hates the idea of having cancer. We are both involved with a local charity for cancer and he plays music at the local school concerts. 
Keep flying them planes, keep fishing and it’s brilliant you are supporting other lads with this bl##dy disease. 
Take care 

Leila 

User
Posted 14 Aug 2024 at 16:35

CJ, thanks for the update, you have been an inspiration to many of us on here. 

Keep going mate.

Thanks Chris 

User
Posted 14 Aug 2024 at 20:46

Chris J.,

Many thanks for the update.  I'm sorry to hear that your PSA is rising, even if slowly.  As others have said, hopefully it will take a long time to reach the threshold for intervention, and then you still have other options.  But that's being rational, and doesn't account for the emotional toll this illness takes on you (and most of us).  Sometimes, it feels as if we are at the mercy of the doctors, because it's they who will decide what the threshold is, and which interventions we are allowed to have.  

Best wishes,

JedSee.

User
Posted 14 Aug 2024 at 22:46
Keep going Chris. As you say plenty in the armoury

Bri

User
Posted 14 Aug 2024 at 22:46
Keep going Chris. As you say plenty in the armoury

Bri

User
Posted 14 Aug 2024 at 22:46
Keep going Chris. As you say plenty in the armoury

Bri

User
Posted 15 Aug 2024 at 23:43
Keep up the good work and the hobbies Chris you are a legend...
User
Posted 16 Aug 2024 at 17:40

Stay as strong, cool and funny as youve always been CJ.

Love at you man.

 

Jamie.

User
Posted 11 Feb 2025 at 13:30
So guys and gals , my four monthly check-in !

I’m now officially 10 years on from G9 diagnosis and June 15th will be 10 years from surgery where I was found to be ‘ incurable ‘ as well as ‘ insufferable ‘ 🤭.

G9T4 N1.

Been on Decapeptyl for exactly 4 years since Mets to spine and ribs and remote lymphs. Causes me little bother but for the most aching legs you could dream of. PSA has been steadily rising since nadir and this time has seen its highest jump from 0.56 to 0.75.

So I guess the beginning of failure of HT. Must admit I was a bit sad to see that rise and it’s so trying living with this disease. I try to remain positive and fill my time with my model planes and fishing. Can’t wait till summer. Love and wishes to all 💪

User
Posted 11 Feb 2025 at 13:44

Hi Chris. 
Sorry to see a rise in your PSA but still fairly low numbers. Let’s hope the next one is static or another low rise. I’m keeping my fingers crossed for you Chris as you’re really giving this disease a run for its money… 👍

Had my blood test today and hoping at next week’s consultation he’ll tell me I’ve not had a rise but not holding my breath. Last reading was 19 up from 12 a few weeks earlier. 

Keep enjoying your planes and fishing - way to go buddy 🙂

Phil

Edited by member 11 Feb 2025 at 13:45  | Reason: Spelling ….

User
Posted 11 Feb 2025 at 16:02

CJ, sorry to see the rise, is there a plan. Despite our reservations you can't say we haven't tried.

Thanks Chris

 

User
Posted 11 Feb 2025 at 16:05
Chris I think the plan because I refused upfront Abi or Enza is to wait till it reaches 4. Then go from there. We’ve both tried mate. You more than most. It just gets more unnerving when you plod on to ten years. Could say we are lucky of course but it’s tough looking over your shoulder each and every day
User
Posted 11 Feb 2025 at 16:17

Sorry to read about this recent rise Chris. It is hard living with this disease. Like you I will be 10 years from surgery this year on 23/7/2025. Wishing you all best wishes, Ian. 

Ido4

User
Posted 11 Feb 2025 at 18:04
Keep up the fight Chris , you’ve been inspirational to many men on this site . 10 years is a mighty achievement.enjoy your fishing and modeling .

Best wishes

Debby

User
Posted 11 Feb 2025 at 19:10
Chis, so there's still some different tools in the box for you. Your determination to do it your way is inspiring and I hope that continues.

All the best

Cheers

Bill

User
Posted 11 Feb 2025 at 22:39
As ever an inspiration Chris, good luck with fishing! Apparently the best trout fishing lake in Wales is about a mile away from me if you fancy trying trout anytime.
User
Posted 12 Feb 2025 at 07:09

Sorry to hear that your PSA is up Chris. 

Keep fighting and enjoying life. 

Good luck, 

Kev.

User
Posted 16 Jun 2025 at 07:09
Good morning all !

Today ‘celebrates’ exactly 10 years from my prostate removal surgery where I was found to be G9T4N1 and basically incurable. I was an awkward patient from the start and refused certain treatments and delayed the start of others , all based on my quest to continue a best quality of life.

I’m happy to say my last psa was 0.81. Yes it’s been on the up showing decline in efficacy of my HT , but essentially it’s not a bad place to be and I feel blessed and grateful for what I have. I’ve been on injectable Decapeptyl for 4 1/2 yrs now and have tolerated it very well. Biggest downside for me has been joint pain , especially my knees and legs. Other than that all good and I walk the dogs , enjoy the gym with my son , and flying my model planes and fishing. I have a lot to be thankful for despite the disease.

As ever wishing everyone afflicted my best wishes and strength.

User
Posted 16 Jun 2025 at 08:51

Hi Chris,

You are an inspiration to us all and a great stalwart of this forum.  You and the other incurables who regularly contribute on here are my cancer heroes. I think it's wonderful that despite having to deal with your own serious health issues you still find time to help others. I hope you still have many model plane flying and fishing days ahead of you. You sound a an incredible dad and I'm sure your son is very proud of you. 

Good luck mate.👍

Edited by member 16 Jun 2025 at 08:54  | Reason: Typo

User
Posted 16 Jun 2025 at 11:25
I look forward to yours and other oldies posts ! It gives us all hope . Gary’s PSA is still undetectable with similar stats and will be 10 yrs at the end of yr . Long may it continue.

Best wishes

Debby

User
Posted 16 Jun 2025 at 12:34

So pleased to read this. Brilliant news, so pleased for you, long may it continue. ‘Every days a good’un’ Enjoy the summer planes, fishing, gym, dogs, these things keep us going. 

Edited by member 16 Jun 2025 at 12:35  | Reason: Not specified

User
Posted 16 Jun 2025 at 14:21

Great to hear this Chris. Yours were the first posts I read on here nearly 3 years ago. You are an inspiration.

User
Posted 16 Jun 2025 at 15:19

Hi Chris. Congratulations, 10 years , way to go mate 👍. I recall reading your posts early on in my journey and they were very inspiring. You truly stood up to this nasty disease and took the shots… You helped me to be braver. I’m so pleased your treatment is still keeping the little b****** at bay… 

I am now 8 years since my first appointment and 7 1/2 since diagnosis. Sometimes wonder what could have been had they diagnosed it 6 months earlier. But can’t change it … 

Great to see you’re still taking everyday as it comes. And enjoy those days with your family. Keep it up 👍 

Phil

User
Posted 16 Jun 2025 at 17:02

CJ, Great news on the ten year anniversary. Thanks for the help you have given me and other members over the years. Take care .

Thanks Chris 

User
Posted 16 Jun 2025 at 21:45
Keep it up CJ!
User
Posted 17 Jun 2025 at 07:54

Congratulations on your 10 years since prostate removal Chris. 

You've certainly taken this disease by the horns and stayed in the driving seat, demonstrating your determination to have the best possible quality of life. 

You're an inspiration to others, keep fighting!

Many thanks, 

Kev.

 

User
Posted 17 Jun 2025 at 10:40

10 years is amazing, well done Chris.  Keep on keeping on!

User
Posted 18 Jun 2025 at 05:50
Congratulations from me too Chris. Long me it continue 🤞
User
Posted 18 Jun 2025 at 05:50
Congratulations from me too Chris. Long me it continue 🤞

Cheers

Bill

User
Posted 24 Jun 2025 at 08:45
Great news Chris, 10 years and PSA still under control. Remarkable achievement.
User
Posted 24 Jun 2025 at 09:26

Well done, Chris!

User
Posted 06 Aug 2026 at 14:50
It’s been ages guys. Probably cos I couldn’t find my own thread 🤣. June this year marked 11 years survival of T4 PCA diagnosed at surgery. Some of you remember me. I’m the one that opted QOL all the way and ignored as many treatments as possible for as long as possible.

I’ve been on Decapeptyl for 5 1/2 yrs and it’s been failing this last year. Back on the Oncos books and full set of scans in June. Spine and rib mets stable and lymph node mets stable but PSA steady rise to 2.2 and osteoporosis confirmed with a DEXA scan.

I can’t really grumble but am only 59. QOL is generally very good except for chronic leg/knee pain and hand pain. I’m a healthy 12 1/2 stone and manage to swim most days.

I really try to stay positive and eat and drink what I want. I enjoy my hobbies of fishing and RC flying still.

Plan is to start Abiraterone September after another suite of scans. Maybe even put it off again to maintain this quality.

Not done yet guys. Planning a 60th sounds good 🙏

User
Posted 06 Aug 2026 at 15:22

Hi, Chris.

I've just gone over your bio again. Your PCa story is mind blowing. Five years ago, and many years after radical treatment, you've dealt with a PSA of nearly 1000. That's incredible! 

Honestly, mate, I can't put into words how much admiration I have for how you've dealt with everything this disease has thrown at you. Yet, through it all, you've always maintained such a positive attitude.

Your courageous stance, to put quality of life first, has worked and defied the odds. Long may it continue!

I hope your family are well, and that your kids realise what a brave and special dad they've got.

You are truly an inspiration to us all.

Edited by member 06 Aug 2026 at 19:52  | Reason: Reiteration

User
Posted 06 Aug 2026 at 21:17

Over a year since your last post but not forgotten.   With my psa slowly rising for 5yrs I often think dare I do a Chris.  Probably not but it's a challenge.   All the best, Peter

User
Posted 06 Aug 2026 at 22:11
Can't believe it's been 5 years since you went on the hormones!

5 years on won't it be daraloutimide or apalutimide to avoid the steroids necessary with aberaterone?

Being you are still so young and fit maybe triplet therapy with chemo, Daraloutimide and HT?

BTW I already know the answer to that last question starts with f and ends with f 😂

Never forget you are an inspirational legend on this site.

User
Posted 07 Aug 2026 at 11:23

Chris, You are doing so well, David is also an 11 year man with stage 4 and he’s also doing well. You have supported, cared and congratulated good PSA results, to many here, it means so much. Personally the support we’ve had from you will stay with us for ever. During our darkest days, you gave support and the courage to carry on. Doing this whilst managing your own situation and additional challenges. Living with PCa, and maintaining QOL is something you have shared and we wholeheartedly agree on. Thankyou Chris. 
Leila 

User
Posted 13 Aug 2026 at 10:13

what a heavy load to carry at 47. You've been through the wringer with the scans, the biopsy complication, and now waiting on the adrenal results. It is completely normal to be terrified about the impotence aspect. that is a huge part of life and identity as a man, and grieving that possibility is a real process. Take it easy on yourself and lean on El as much as you can

 
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