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Post RP and SRT journey - July 3023 PSA test update

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User
Posted 07 May 2020 at 12:18

Fingers crossed for a good result Pete.

Ange 

User
Posted 07 May 2020 at 13:57
Hope results good Pete. Mine were really bad but expected. My psa is so high now I never ever worry about it lol. I concentrate on all the other bloods to see if my organs and bones are ok , and make my decisions based on that. I’ve been in very very dark places too , and recently my excellent lady councillor of two years has decided to pack in totally which has caused me a real panic tbh. My call from Onco is on 15th and he is very on board with my decisions as is my GP. I’m hoping he won’t push me for HT and instead give me another 3 months for double scans and review.
User
Posted 12 May 2020 at 10:59

Hi all

Latest results: 0.05

History

Feb 2019: 0.07
Jul 2019: 0.05
Nov 2019: 0.09
Feb 2020: 0.09
April 2020: 0.05 Errata May

Nurse was pleased but seemed surprised at this large turn around. We both agreed it’s trend not numbers that counts but this looks good to bank.

Edited by member 18 Aug 2020 at 12:43  | Reason: Not specified

User
Posted 12 May 2020 at 11:17
Maybe you are just going to be like John with a naturally high benign PSA - nearly 8 years post SRT his PSA has ranged from 0.08 to 0.11 and then settled again at <0.1.

We did start to notice a pattern; the PSA is usually highest in August which immediately follows our month in France cycling, drinking red wine (him, not me) and cooking a lot of red meat on the BBQ (also him, not me). It would have been interesting to test this out again this Summer although in the current situation, we may not get the chance 😢

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

User
Posted 12 May 2020 at 12:54

Pete

Great news, bet she was glad to be the bearer of good news. 

Thanks Chris

User
Posted 12 May 2020 at 13:15

Great news to hear another good result for you Pete.

Ange

User
Posted 12 May 2020 at 15:53
Hi, Pete,

If you lived in the West Midlands near me all your results would have come back as <0.1, “undetectable”, which might have saved you some anguish.

Not saying an additional decimal place is right or wrong, but it saves me worrying, as my PSA is undetectable too.

Stay alert! Control the virus!

Cheers, John.

User
Posted 12 May 2020 at 16:31
Hi all

@Lynn - I think my great white whale is stress. I've worked hard to bring that under control. Why not replicate your holiday with exercise bikes and a BBQ in the garden!

@Chris and Spaniel - cheers!

@Bollinge - yes I do worry a lot about the numbers. I asked about sensitivity and they go down to 0.04 as measured and then >0.04. So I am effectively two points off of undectetable within undetectable :)

As my wife and son both said, time to stop moping and start living :)

User
Posted 12 May 2020 at 21:42

Fantastic news. Definitely time to start living. So pleased for you and your family.

Ido4

User
Posted 12 May 2020 at 23:20
Great news 👍
User
Posted 12 May 2020 at 23:32
Great stuff
User
Posted 18 Aug 2020 at 12:46
Feb 2019: 0.07

Jul 2019: 0.05

Nov 2019: 0.09

Feb 2020: 0.09

May 2020: 0.05

August 2020: 0.06

Have been told this is well within margin of error and can be considered stable. Was offered six monthly testing but said would think about it so three months for now.

What do you good people think about going to six months?

User
Posted 18 Aug 2020 at 13:11
Others may disagree but personally, I would stick with 3 monthly for at least another couple of years. John is 8 years past SRT and still has the 3 monthly test because it hovers just below or above 0.1.

I suppose the adjunct to that would be if the PSA test makes you very anxious in which case it might be better to only be anxious twice a year!

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

User
Posted 18 Aug 2020 at 13:17

That looks a really nice set of results. My treatment was HDR, EBRT, ADT and I'm only just coming off HT. My onco said "six months check, no point in stressing people out every three months". I don't think my PSA Test results will be very meaningful when you allow for RT/PSA bounce, coming off ADT . So it will probably take a year before my PSA settles down and three month checks would be all over the place at the moment.

Of course yours is more stable and any increase would be more meaningful as you have no prostate. If having tests less often means less anxiety go for six months, if your going to be anxious all the time because you think your PSA may be creeping up and no one is watching then three months.

 

Dave

User
Posted 18 Aug 2020 at 13:19
Hi Lynn

Thanks.

That is exactly the balancing act we talked about. I decided on three months because my gut led me there. This time I was only visibly stressed for two days as opposed to two weeks pre test. I think I’m either getting more used to it or more used to the fact that mortality is a lottery. I’ll need to work even harder not to show my fears as it does bother my wife and I can’t have that.

Still, 0.06 is at the very least not a bad result at this point in time, would you agree?

User
Posted 18 Aug 2020 at 13:28

Cheers Dave

I’m banking every three months as a free meal ticket as I get them 😂😂

The nurse said they do not do anything until a mans post SRT PSA goes above 0.2 but as you suggest, knowledge is power.

I’m getting more used to PSA anxiety and in many ways when I get the anger and fears in check it helps me understand my life and death journey a bit more. I’m not saying I relish a bumpy end but it gives me more of an appreciation of my own and others journey. Given I wrote a thesis on existential counselling for cancer patients it’s an ironic “eat your own dog food” thing going on here 😂😂

Edited by member 18 Aug 2020 at 13:29  | Reason: Not specified

User
Posted 18 Aug 2020 at 16:58

Great result. I would stick with three monthly for now.

Very pleased for you.

Ido4

User
Posted 18 Aug 2020 at 20:09
Hopefully it will only be one day panic next timw and zero days the next time after that 😂😂
User
Posted 18 Aug 2020 at 20:43

Great result. Have mine next week so kinda understand where your mindset is. I looked into getting a PCR machine for home but obtaining the test materials and bloods the tough bit 👀🤪

TG

User
Posted 18 Aug 2020 at 22:14

😂😂 You sound like you were planning to set up a crime lab like Abbie in NCIS 😂😂

 
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