psa testing anxiety- Do we ever get over it?

User

Posted 19 Sep 2019 at 13:36

Great news. Such a relief.

If life gives you lemons , then make lemonade

User

Posted 19 Sep 2019 at 13:39

Thanks Chris - I don't know why waiting for this one was worse than any of the others, but I guess coming up a year since last HT made it so important for us.

User

Posted 19 Sep 2019 at 16:37

Brilliant

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

User

Posted 07 Feb 2020 at 14:44

Hi; Results in today...

So 18 months since Radiotherapy finished and HT stopped September 2018 (so 15 months since Hormone Therapy finished)

T2c/3a N0M0

Gleason 3+4 psa 16

Psa has been <0.1 8 weeks post Radio

0.2 May 2019

0.2 September 2019

results back today 7th February at 0.4

Is this what they call the bounce or should we be worried?

Thanks for reading

Edited by member 07 Feb 2020 at 15:44 | Reason: Not specified

User

Posted 07 Feb 2020 at 16:23

As you still have a prostate I believe anything up to 2 is ok provided you are not on hormone therapy

User

Posted 07 Feb 2020 at 16:24

It’s fine - it is just healthy prostate cells regenerating and creating a small amount of PSA as he recovers. As long as it stays below 2.1 you are okay.

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

User

Posted 07 Feb 2020 at 16:28

Thanks Both - the Nurse at the Hospital has just rung and was a touch doom and gloom which is unlike her and is going to get an appointment for us to se the consultant. I just wanted to check with you lovely bunch because we are beginning to panic??
She even talked about scans but then said you won't see anything at 0.4.

Does it fluctuate up and down quite a bit?

Thanks as ever
x

Edited by member 07 Feb 2020 at 16:51 | Reason: Not specified

User

Posted 07 Feb 2020 at 21:40

Did you remind her that your OH hasn't had surgery?

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

User

Posted 07 Feb 2020 at 21:53

Lyn, you are spot on, I asked my husband if he thought she got confused with the fact he hadn’t had surgery.

He said she mentioned radiotherapy : however I will report back next week when we hear from the oncologist.

thanks Lyn

User

Posted 31 Mar 2020 at 17:43

I don’t think we do, well I’m not! Had my blood taken on 16 March and my consultant appointment was 24 March but was cancelled due to Coronavirus. I was told that I’d hear in due course. At the weekend my mate told me his appointment had been changed to a phone consultation. The result was still unrecordable and he’d see him in 6 months.

i phoned urology and was told my consultant has done me a letter and would see me in four months. This has left me confused and anxious, not at all sure when I will get the letter and why four months? My mind is now racing with all the permutations.

User

Posted 01 Apr 2020 at 02:11

I’m quite chilled regarding my PSA tests. I had extended my testing to four months rather than three, but I brought it a couple of weeks earlier because of all the malarkey over Covid 19.

I had the test last week at a local chemist, and the ‘undetectable’ <0.1 result was on my iPad Patient Access app next day.

I’m going to extend future tests to six month intervals.

Best of luck to all.

Cheers, John.

User

Posted 10 Apr 2020 at 16:18

All these people who get results sent to their iPad, back same day from chemists. Mine’s a week wait and back to the consultant. It’s now three weeks since they cancelled the appointment. I even went to the GP and they said they would print it out for me, unfortunately the hospital haven’t entered the results onto the computer. My mate whose appointment was the week after mine has had his results, same consultant too.

Ive realised it’s really getting me down. I’m becoming irritable and destructive, as I do when down.

User

Posted 10 Apr 2020 at 16:43

Try calling the hospital urology (or oncology, whichever department) and ask for it. The clinical nurse specialists (CNS, Macmillan nurse) may give it to you.

Failing that, you could try asking your GP for a PSA test. That's what I do anyway.

User

Posted 10 Apr 2020 at 17:09

That's what I would do as well .... ask for a new PSA test from the GP. Worth checking though which lab the GP uses and whether that is the same one as your consultant. There may be small variations from one lab to another.

Do you live in an area where there are very high numbers of COVID cases? That is likely to affect how quickly they can get your PSA results.

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

User

Posted 10 Apr 2020 at 17:11

I’d second the advice to get your PSA test done at your GP’s. I had my latest test done by the nurse at my GP’s practice at 9:30am this Thursday; the result was up on the online system at 6:20pm the same day.

Best wishes,

Chris

User

Posted 10 Apr 2020 at 18:54

The test is done at the GPs but the results go to the consultant and by the look of it the hospital enters it onto my records. I tried ringing urology but I got put through to someone in a different department at a different hospital, due to COVID I believe. She made me feel awful for having called.

The Macmillan CNS is a waste of space. None of who had our operation done on the same day have used her. She never there, never answers calls. We found out afterwards our ward was 10’ from her office, did she introduce herself?

You May get the impression I have no faith in my NHS trust. I used to work at a large trust in a big city nearby, a work colleague lived in the same trust area as me, she said if she ever needed to call an ambulance she would drag her family member up the road so that they could get away from our nhs.

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psa testing anxiety- Do we ever get over it?

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