A rise on this test

A rise on this test

User

Posted 08 Nov 2018 at 10:35

Just phoned surgery for latest PSA results. Receptionist said they have come back normal. I asked for the number and she said they were 0.08. My last test in April/May was <0.01 so quite an increase. So do I wait for my next 6 month test. Do I request to see the oncologist or do I request a blood test in three months time

This result is at the stage we’re Adjuvent RT was recommended 5 years ago

Bri

User

Posted 08 Feb 2019 at 16:13

A very sobering thought indeed. But as we know Chris we have many men on here alone who have far outlived the ‘specialist’ prognosis/predictions

Stay strong mate

Bri

User

Posted 10 Feb 2019 at 17:44

Bri,

I know that some of the posts are awful and really show the very bleak side of cancer but please take heart in that when you search for posters with symptoms like N's, there are very few. What there are on this site are hundreds of men who do indeed "outlive" the statistics, who live long enough for the next treatment be approved and who function almost normally with similar numbers to N. N is an anomaly, he doesn't fit the boxes.

Morbid fascination is something I'm sure most posters have experienced, when things are looking bad it's sometimes hard to not look for how much worse it can get, I know I did. Then knowing how awful it is/can be, I felt more appreciation for the very little things that were good. I still get waves of resentment and anger and "it's just not b****y fair" moments and I have to talk myself down to be in the here and now with N and the kids.

I'm not always sure how my posts are taken but I mean this to be supportive in every way. Only a very tiny percentage are as awful as N's.

Sending you hugs and best wishes.

Kentish

User

Posted 05 Feb 2019 at 21:36

Bri

Not great news. I am in a similar situation and can't say the idea of HT is appealing, hopefully we both might not have further rises.

Thanks Chris and Dawn

User

Posted 06 Feb 2019 at 12:28

Cheers Bri

I’m hung over 😵😂 and frankly I’m s*** scared of Tuesday but I just have to put one step in front of the other and stop being a baby. Plenty braver here in car worst straits.

User

Posted 08 Feb 2019 at 17:05

Originally Posted by: Online Community Member

Your post is very sobering Chris.

Far from sobering, I think Chris should use those lemons to make a few gin & tonics!

I know this is in the vein of my usual ’concentration camp humour’, and I hope it will be taken in good part.

Best of luck to all of us.

Cheers, John.

User

Posted 11 Feb 2019 at 09:01

Thank you both and please please don’t think I was talking about your threads and the information you share. That is what the forum is for and having been around here for the last six years I am fully aware of that. We are here to support each other and this forum is a god send.

I think sometimes depending on your frame of mind it’s possibly better to decide what to read. I appreciate both of you (Kentish and Teacups) for replying when you have so much to deal with at the moment. Sending you both virtual (((((((hugs)))))))

Bri xx

User

Posted 31 May 2019 at 17:11

Great news - if it holds stable at this level for a few years, that would be perfect.

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

User

Posted 01 Jun 2019 at 07:53

Originally Posted by: Online Community Member

Bri

That sounds promising, I get me latest result on Tuesday, not chasing it this time, it will be what it is.

Thanks Chris and Dawn

Fingers crossed it has come down, stayed the same or if it has risen that it is insignificant

Let is know Chris

Bri

User

Posted 28 Jan 2020 at 15:22

Just seen oncologist to discuss the PSA from the end of November (0.14). They are not concerned and said they won’t start scans until the PSA reaches 1 (is that reasonable?). They said that could be some years away based upon current doubling time.

I meant to ask if it was worth considering a PMSA scan at this point. I’m thinking about treatment with RT for any possible mets it may identify. Do I contact them regarding this or wait for my next appt in July

Cheers

Bri

Edited by member 28 Jan 2020 at 15:22 | Reason: Not specified

User

Posted 05 Mar 2021 at 16:08

Sorry to hear that Bri, not the best result I guess. Try to enjoy the next few days ; I’m slowly learning that worrying changes absolutely nothing at all. Wait for that advice Tuesday. Good luck

If life gives you lemons , then make lemonade

User

Posted 05 Mar 2021 at 16:47

Cheers Chris. Not overly worrying. Trying to convince my self that even though this has jumped higher than I would have liked it’s taken 16 months to get to this point from 0.17. Just hope peaks and plateaus can be a common occurrence along the way

Hope you are ok

Bri

User

Posted 05 Mar 2021 at 18:05

Hi Roy, so good to hear from you. Hope all’s as good as it can be at your end 👍

User

Posted 06 Mar 2021 at 12:37

Sorry to read about this rise Brian. Hope the consultation provides some reassurance and a way forward.

Ido4

User

Posted 09 Mar 2021 at 14:30

Oh well I guess the cancer is back Bri but still at a minute level somewhere ? Doesn’t look like my case of romping micromets. Sounds like her advice is solid re holding off treatment , and also holding off scans until psa is higher. Hopefully it will be a naughty node or something that can be target zapped. Good luck mate

If life gives you lemons , then make lemonade

User

Posted 10 Mar 2021 at 11:53

It seems sensible to hold off scans until PSA is a bit higher. Hoping if anything is found they can target it with RT. I totally understand how the change in tone and emphasis is unnerving. Take care Bri.

Ido4

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User

Posted 08 Nov 2018 at 11:11

Hi Bri

sorry to see that the PSA has risen albeit on a super sensitive test. If I were you i would be looking at a repeat test in 3 months to establish if there is a trend developing.

all the best

Roy

User

Posted 08 Nov 2018 at 14:35

Bri.

Sorry to read the increase. If you think the onco would only request a PSA test then you might as well have one via your GP in 3 months time.

Ray

User

Posted 08 Nov 2018 at 14:41

Thanks both. Looks like I will have to try and persuade the GP for a blood test for the end of January. He’s referred to it as normal but having said that it’s the same surgery who recorded my PSA of 20 as normal 6 years ago

Bri

User

Posted 08 Nov 2018 at 15:11

This is intriguing. I live in Coventry and my GP gave me a stack of PSA forms which I just take to my local Lloyds chemist, Zoë takes a blood sample and the next day my PSA result pitches up on my iPad app at the same time the GP receives it. So basically I can have a PSA test when I want, although I will restrict myself to three-monthly tests from now on as they have had nearly an armful of blood lately!

However, I went to Solihull Hospital this week, only fifteen miles away, and the dermatologist gave me a blood test form but there were about eighty patients waiting in phlebotomy, and even some in the corridor outside the waiting room. I repaired to a local pub for a quick one. When I got back an hour later, my number was called, and the phlebotomist was flabbergasted when I told her that I could go to a local chemist in Coventry for a blood test, and she said their form was only valid in their hospital.

I also told her that recently Zoë had difficulty in getting samples from my arm, and pointed to a throbbing vein (unfortunately not in my dick) on the back of my hand, and said “Just go in there with a butterfly needle, no problem”.

She said: “We don’t have butterfly needles here” and started mining my arm with a needle. She eventually found a sample, but I now have a massive (painless) bruise on my arm.

Talk about a postcode lottery!

Cheers, John.

Edited by member 08 Nov 2018 at 15:14 | Reason: Not specified

User

Posted 08 Nov 2018 at 16:24

We’ve talked before about super sensitive tests Bri. You are still in an AMAZING position. See your GP , explain your angst on mental issues , and ask for a test in 3 months. If I was a gambling man I’d say you’re going to live forever !!!!

If life gives you lemons , then make lemonade

User

Posted 08 Nov 2018 at 16:51

Just re- read your history Bri..

In view of the fact that you've already had ART and your post op histology showed a focal breech I would get another PSA test in say ..3 months time....just to see if this was just a 'rogue' one off result...
I'm no expert as you well know...but I wouldn't even be considering HT or anything at this stage...
If your PSA continues to rise to a level whereby a specialised scan might be able to identify any activity in the future ..then I'd be going for that first..
Easy for me to say I know..
I agree with Chris J .... I reckon you'll live forever! https://community.prostatecanceruk.org/Scripts/tinymce/plugins/emoticons/img/smiley-wink.gif

Gulp!! ... That's bloody concerning that your surgery referred to a PSA result of 20 at the time as normal!! WTF!! https://community.prostatecanceruk.org/Scripts/tinymce/plugins/emoticons/img/smiley-wink.gif

Best Wishes
Luther

Edited by member 08 Nov 2018 at 17:07 | Reason: Just added a comment about a previous PSA reading....

User

Posted 08 Nov 2018 at 17:13

Cheers guys. Will see what’s happening in three months with it. Bloody typical though it’s 6 years to the day that I got the call I had PCa. I just hope this isn’t the start of that bloody treadmill again...No smoke without fire

Bri

User

Posted 09 Nov 2018 at 08:54

Interesting conversation with the specialis nurse at PCUK. Very knowledgable and supportivE. An interesting question she did ask was did anyone ie urologist/oncologist ever say what undetectable was for me. I said I couldn’t recall that conversation but did point out that the oncologist did say they would have like to have seen my post RP PSA to have been lower than 0.06. The nurse said so to them 0.06 may not be classed as undetectable. This obviously means if applying that same theory that 0.08 is not undetectable.

But she agree that either a 3 or 6 month PSA test is the way forward

Bri

Edited by member 09 Nov 2018 at 08:55 | Reason: Not specified

User

Posted 09 Nov 2018 at 10:25

Hi Bri,

I have discussed this matter in depth with both my surgeon and two oncologists.

The surgeon and my local oncologist said that a PSA test assay result below 0.1 is undetectable, and testing to lower than that is pointless. However the top man at the Royal Marsden Hospital who I saw only last week said that his biochemist can test down to <0.04, which his test reveals I am😁🍾

He said to beware of consecutive quarterly rises over several tests, even if they are <0.1, whereupon a PSMA PET scan would be an appropriate first step to locate the source of the biochemical recurrence, if any.

Cheers, John

Edited by member 09 Nov 2018 at 12:59 | Reason: Not specified

User

Posted 09 Nov 2018 at 11:53

Thanks John, I obviously hope it’s not the first sign of recurrance but if it is I’m not sure a scan would help as I would have run out of curative treatment options

Bri

User

Posted 14 Nov 2018 at 21:24

Actually thinking about this. Would it be worth asking for any kind of scan at this time

Cheers

Bri

User

Posted 14 Nov 2018 at 23:10

Probably not since as you point out, there are no curative options and your onco has already told you that she would not restart treatment unless your PSA got to 20

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

User

Posted 14 Nov 2018 at 23:12

It is only one result- have you asked whether a) they have changed lab provìder or b) purchased new machines or c) had the existing machines calibrated recently?

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

User

Posted 14 Nov 2018 at 23:17

If it had risen to say 0.03 0.04 then I would suspect something like that. But from <0.01 to 0.08 seems more significant that that ☹️

Plus I would seek a 2nd opinion about the point I would need further treatment

Bri

Edited by member 14 Nov 2018 at 23:19 | Reason: Not specified

User

Posted 15 Nov 2018 at 07:25

Originally Posted by: Online Community Member

Probably not since as you point out, there are no curative options and your onco has already told you that she would not restart treatment unless your PSA got to 20

Lyn didnt J have a scan last year when his PSA had risen? Was there a specific reason for that as he would be in a similar position to me wouldnt he

Bri

User

Posted 15 Nov 2018 at 09:11

John's PSA had gone up to 0.11 and he was crippled with back pain. The scan showed that he needed new knees 🤣

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

User

Posted 15 Nov 2018 at 10:12

Morning Bri,

Sorry to hear you're having a worrying time at the moment. Can I ask, was the blood test done at DRI or Hallamshire? The reason I'm asking is that my Oncologist at Sheffield wanted me to have all my post SRT PSA blood tests done at the same lab due to machine calibration variables. All the best mate, Paul.

User

Posted 15 Nov 2018 at 10:16

Bri.

I'm sure you have but to check , have you a PSA level you would want treatment, if needed, to start?

Ray

User

Posted 15 Nov 2018 at 11:08

I posted this in another thread but worth repeating...

http://www.yananow.org/PSAexperiment.shtml

Terry reported a huge variation in PSA levels over a 30 day period whilst not on treatment. The implication is that small sample sizes over a short period of time have a lot of noise and one needs a longer period with more samples to get a reliable PSAdt.

Not to say you don't monitor closely and take action if needed.

Edited by member 16 Nov 2018 at 16:07 | Reason: Not specified

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