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Chris J's Journey

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User

Posted 26 Sep 2023 at 11:43

Chris, although I'm in a completely different situation to you, I totally understand where you're coming from. I'm four and a half years since treatment, and each six monthly test seems to get more and more stressful. It's horrible. All you can do is take it a day at a time. You know you've got friends here if you need to talk.

Very best,

Chris

User

Posted 26 Sep 2023 at 11:56

You’ve got this Chris. You’re a fighter and that’s what you do….you have been through so much already and none of it is fair. There’s no reason why everything won’t be just fine on your next test either though. Keep being positive and strong and enjoying the best times with your son and family and enjoying your hobbies. You are allowed your down days too though….just make tomorrow a better one 🤞🏼

Take care x

User

Posted 26 Sep 2023 at 13:21

Hope you feel more positive tomorrow Chris, you’ve been absolutely amazing with all you’ve been through. Everything crossed for you for your next test.

Angex

User

Posted 26 Sep 2023 at 14:24

Part of me is surprised you still put yourself through the PSA test. I assume you are only still having it so you know when to start Enzo? Or maybe Daralutimide?

Perhaps consider up front (well 2 years in!) Enzo and then stop having PSAs!

User

Posted 26 Sep 2023 at 20:19

Ahhh Chris, eight years is hard, and no matter how much you tell yourself not to worry, or worry less… how can we. David’s pretty much the same ,he pretends not to worry. I try to be calm, and pretend not to worry, inside I’m churning up. He’s me man.
I don’t have any advice, or suggestions. David’s is eight years on too, with Gleason 9 now stage four.
Somehow we pretend to carry on as normal, keep up the charade keep a smile on.
Fly your planes keep you lines tight, you will be in out thoughts.

David sings and plays every day, it’s his passion and his displacement activity.

I am fortunate enough to be serenaded in out kitchen.

Leila

User

Posted 26 Sep 2023 at 21:51

Chris J,

You have given so much to others with your honesty over the years. Please take good care of yourself now when you need to take stock of your situation. It's no good me telling you not to worry (about the PSA test or anything else). If you can distract yourself with playing with your lad, that might help. Hopefully, you'll have the test and it will be a satisfactory result. And then you can relax a little - until the next time :-(. It never goes away, does it?

Best wishes always,

JedSee.

User

Posted 26 Sep 2023 at 23:43

CJ, I have now found the waiting game to be a little tedious, I still don't worry about the outcome. I hope your treatment continues to keep things under control.

I have a couple of hobbies owning remote controlled aircraft , not flown mine for years. I am now into kite flying I was hoping to fly tomorrow, but being right in the path of Agnes more likely to see the caravan awning flying tomorrow.

Take care and keep going.

Thanks Chris

User

Posted 27 Sep 2023 at 16:56

Chris, I've just read your post from yesterday and I'm feeling a bit embarrassed about my rant over something so insignificant. I've had this for 4 years now and, apart from the lack of energy, most of the time I've felt fairly OK. The main problems have been temporary side effects from the various drugs.

My cancer matastasised into my pelvis and the base of my spine but the drugs seem to have so far largely stopped it. It never eached my lymph nodes which is a blessing.

Must be really hard dealing with this when you are relatively young.

Hope everything goes well next week. I'll be thinking of you.

User

Posted 27 Sep 2023 at 20:27

Not gonna offer any advice that you no doubt would be grateful and appreciative of.....

But CJ?

Youre one of my personal favourites on here.

Love and thoughts brother. Love and thoughts.

Jamie.

User

Posted 14 Oct 2023 at 07:08

So guys , nearly 3 yrs on Decapeptyl and this is the first result that hasn’t gone down. My psa reading was 0.37 from 0.36 four months ago. Small potatoes hey but it looks like I’ve hit my nadir now. It’s either gonna start rising soon or hopefully stay around that point for a good while. Not disappointed but at the same time worried slightly as it seems another turn in my journey. Keep well everyone

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

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