A New Chapter

User

Posted 05 Jun 2020 at 12:55

Hi Steve,

Such a sad time in your life to lose your Dad when he was only 47 and you were 18. I, like you, also believe our treasured loved ones give us a sign that they are still there for us.

i shall go on believing and I’m so pleased you had a happier day.

Angex

User

Posted 05 Jun 2020 at 16:25

Just caught up with this Steve, great news about the PSA drop, long may it continue.👍

User

Posted 06 Jun 2020 at 08:46

Fantastic to read that the planets aligned in your favour this time. Capture the memory of that day and pull it out whenever you have a sad day to remind yourself that 5 star days can and do happen for you . Take care.

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 29 Jul 2020 at 01:09

Hi,

After the wonderful PSA result I had at the end of May:

3.40, a fall from 4.30,

I received a phone call this afternoon from my GP to tell me that my latest test has come back showing an increase to 5.50, my highest figure since I was diagnosed six years ago.

I'm so disappointed and a little bit concerned.

Steve

Edited by member 29 Jul 2020 at 01:26 | Reason: Not specified

User

Posted 29 Jul 2020 at 08:04

Hi Steve

sorry to hear the news about your PSA , hopefuly it is just a blip, will keep my fingers crossed for you.

regards Barbara x

User

Posted 29 Jul 2020 at 09:27

Sorry to see this Steve. What a disappointment after your last reading.

Ido4

User

Posted 29 Jul 2020 at 11:34

Sorry to hear this Steve, try to stay positive

Arthur

User

Posted 29 Jul 2020 at 16:00

Steve

Sorry to see this, have you been offered any scans to see where the cancer is ? I was reading a post elsewhere and the guy had already undergone RP and RT a few years ago. He then had some scans and was having some suspect lymph nodes removed. His urologist did describe it as unusual.

Take care.

Thanks Chris and Dawn

User

Posted 29 Jul 2020 at 23:06

Wishing you well, Steve

ulsterman

User

Posted 29 Jul 2020 at 23:23

Hi Steve, if you discount the last PSA test, a rise from 4.3 to 5.5 is more or less exactly in line with your previous rises and should be no surprise. If anything, it seems more likely that the last test was some kind of quirk or error - you did say at the time thst the drop was unexpected.

You could ask the onco or specialist nurse why they are not taking more interest in your case - they don't seem to have even checked out whether the HT isn't working properly or you are now castrate resistant.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 30 Jul 2020 at 00:52

HI,

Thank you for your kind messages of support.

Lyn, to be honest I was thinking the same thing. Ignoring the previous test result, the rise is on the same trend as I've been on since restarting HT two years ago. My oncologist has told me that generally, she expects my PSA to increase rather than go down again as long as I continue on Zoladex alone.

I feel frustrated as I've constantly asked if I can have a PETScan to try and identify where my cancer has reoccurred. I know it may not help me survive any longer but if it means that there's a possibility of a more targeted treatment that would give me more time, I feel it would help. I just feel anxious that delaying things may reduce my options. My oncologist's answer is that she wants to wait until my PSA reaches double figures before sending me for a PETScan.

On Tuesday, amazingly, I am having a bone scan (the only scan I've had in over two years). This has been approved because I've had very uncomfortable pain in my left shoulder for over four months now. I finally managed to be referred for physiotherapy to try and sort it out but now the physio wants to use ultrasound treatment on it, so, aware of the dangers with giving ultrasound to an area that may be affected by cancer, I contacted oncology to check. They came back to me and said a bone scan was the best option so at least that might mean that the physio treatment might be able to continue. I just need to sort out the pain, it's getting me down.

They confirmed the scan before the PSA results came through so I wonder if they would have considered giving me the bone scan anyway. Somehow, I don't think they would have bothered.

I just need to feel that someone is doing something.

Steve

User

Posted 30 Jul 2020 at 07:17

Sorry about the PSA rise again Steve, hopefully the scan will not show anything and it will be a case of them trying to get the PSA down again. Take care mate.

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 30 Jul 2020 at 07:54

All the best for your scan next week Steve. Will be thinking of you.

Angex

User

Posted 30 Jul 2020 at 09:10

Hi Steve,

All the very best, I have followed your posts for many years.

Be very kind to yourself, you more than deserve it. As Lyn alludes to.

Maybe time to request a 'review' Stoic comes to mind..

Are you still having to work as well ?

Best wishes Gordon

User

Posted 31 Jul 2020 at 01:46

Thanks.

Gordon, Yes I'm still trying to work but with the lock down it hasn't been easy.

There isn't much work around for photographers when all the usual events are cancelled. The only thing that I've be lucky to do is all the Reading FC home games.

I feel a little guilty to be one of the limited number of people allowed into the games, especially as I'm not a Reading supporter. I originally grew up in Nottinghamshire so I'm a lifelong Forest supporter.

I hope to continue to work and never retire. Photography is my life, and has been for over 47 years since I left school. My health may mean that I may not be able to achieve that but at least I can try.

All the Best, everyone,

Steve

User

Posted 31 Jul 2020 at 09:17

Maybe nag them for a PSMA scan instead of a Bone scan?

User

Posted 31 Jul 2020 at 09:55

Best of luck for next week.

Paul

User

Posted 31 Jul 2020 at 10:59

Francij1,

I've tried in the past and without much success. They want my PSA to be closer to double figures.

It makes me feel really frustrated because when I was originally diagnosed, my PSA was 48.85. I had been aware for at least eighteen months, that something wasn't quite right. I'd been having peeing problems but I thought it was something that happened as you grew older. I'd never had any health problems and cancer was definitely not on my radar. As it turned out, not going was the biggest mistake of my life as my cancer had already started to break out of the prostate. I had ruined my chance of a cure by leaving it too late, thinking that I was invincible. I never want to make the same mistake again.

I feel that the earlier I can find out where the cancer is, if there's the slightest chance of any treatment to that area that might delay the progression, at least I'm not leaving it too late again.

Being told to wait until the PSA reaches 10 before having a PETScan makes me anxious that I could repeat the mistake I made before: Leaving too late.

Steve

User

Posted 31 Jul 2020 at 11:43

Steve,

Have you considered sounding out one of the private clinics in London, perhaps just only for an initial consultation? Might be helpful / worth the expense?

Flexi

User

Posted 31 Jul 2020 at 13:10

Hi Flexi,

With the severe financial effects of lockdown, we've had no income since mid March, it has hit us hard. Not sure if I could do that at the moment.

If they did a PETScan and did find something, I suppose there might not be anything they could do but at least I'd know where it is.

Steve

Edited by member 31 Jul 2020 at 13:13 | Reason: Not specified

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