Home PSA test

User

Posted 10 May 2020 at 16:34

My first post here. I have stage 1 prostate cancer. I'm 57. Very fit and active. I had decided on surgery, I've had the pre-meds but with Covid my surgery date has been pushed back. So, I have had time to do research and I am really glad that I have. The article here https://prostatecanceruk.org/about-us/news-and-views/2016/9/long-term-study-shows-active-surveillance-offers-same-10-year-survival-rate-as-radiotherapy-or-surgery offers a lot of hope for men in my position. I will now choose Active Surveillance. I will also be attending to my diet. Another avenue that I will explore is visualisation and mind relaxation. An ability to self monitor PSA would appear to be a very useful source of information during AS.

Has anybody tried home PSA tests? There are plenty available. A search on this forum did not provide a direct result.

User

Posted 10 May 2020 at 20:29

I think your GP will be monitoring your PSA, but you do need to make sure it happens.

With all the charity testing events canceled, the Graham Fulford Chritable Trust which provides the infrastructure to run many of them is intending to roll out a home testing kit soon. There are existing home testing kits, but I don't know how good they are. When I looked around for one, they all came with a private consultant appointment to jack up the price which I didn't want - I already knew I had cancer.

Something that makes a significant difference to the length of time men on AS stay on it before they switch to active treatment is the amount of exercise they do. Exercise significantly slows the progression of the cancer.

User

Posted 10 May 2020 at 21:08

If you choose AS, it is essential that your urologist offers you a monitoring programme that meets the NICE guidelines - that includes 3 monthly PSA test with annual DRE and annual mpMRI OR annual DRE regardless and an mpMRI if your PSA rises even a small amount. To be suitable for AS, it is also important that you have had a proper mpMRI and template or image guided biopsy, not just a TRUS.

There should be no need to get home testing and one of the strong arguments against it would be the potential difference between the processor of the home test and the lab preferred by your urologist - it might need 6 or 9 months of home tests to collate enough data to be able to compare the two labs and make any judgments about trends.

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

User

Posted 11 May 2020 at 05:12

My PSA testing regimen is thus:

GP gives me some blood test forms and I choose when to have one. Originally it was every three months, then four months and now two years post-op - with undetectable PSA at every test - I am thinking about extending to six months.

Make an appointment on-line with phlebotomist at local Chemist (I always book the 07.30 one, when they open).

PSA test result sent to my GP and to my IPad next day.

I seem to be very lucky as this system doesn’t seem to be available everywhere, as some men here report difficulties in getting tested, unfortunately.

If you do opt for active surveillance, do heed the words of “Matron” above, follow the testing regime she describes religiously, and chase up your doctors if you think they are not adhering strictly to the plan.

I hope you are on A/S for many years.

Cheers, John.

User

Posted 11 May 2020 at 08:33

Tim,

Same age as you and very fit but was diagnosed back in 2017 and like you was stage 1. Do you have a Gleason score (mine was 3+4)

I was really concerned about the side effects of surgery and opted for AS and would do so again. I was monitored very closely but do be prepared for the stress of waiting for results of PSA tests every 3 months and MRIs at least yearly. I only had a TRUS biopsy but in hindsight I should have pushed for a template biopsy as Lyn suggests.

However by this year things had progressed to stage 2 and I elected for surgery. Who knows whether I could have left it longer but personally it felt the right decision. For me, being able to opt for nerve sparing surgery and having negative margins was very important.

User

Posted 11 May 2020 at 09:22

Thank you everyone for your prompt and detailed responses. This is all very good information. Just being at the start of the journey and feeling supported like this (by unknown people) is very reassuring. It is good to know that people with experience and knowledge are available and willing to help. I am grateful.

My Gleason score is 6. I have 2 tumors and a high count of cancer cells elsewhere in the prostate. My father had prostate cancer and is clear now having had radiotherapy. My younger brother has it too and is on AS in New Zealand.

User

Posted 11 May 2020 at 09:34

Hello Andrew, thank your for your response. It is a very good point.

User

Posted 11 May 2020 at 11:50

With PCa there are no certainties in many respects including how it will progress. if no radical treatment is given and a man is just monitored very carefully as Lyn stated, the risk of it not being picked up in time for successful radical treatment is small enough for many men to consider making deferral of treatment and potential side effects their preferred option. In your position I would be happier going with AS if the MRI and Biopsy indicated that the cancer was well contained and not extensive. The decision has to be the patient's one where AS and radical treatment are options offered.

Barry

User

Posted 14 May 2020 at 10:26

So I had a response to this question from the Specialist Nurses here on this web site:

Sorry for the delay in responding. We do not recommend men to use at home PSA Kits. The PSA tests can be unreliable and misinterpreted. The additional worry is that if you use an at home PSA test you will lose the specialist support of your doctor.

Perhaps I should have made it clear that I am on AS?

User

Posted 14 May 2020 at 11:18

When I was on AS it was under a urologist following a MDT review. THis comprised 3 monthly PSA checks, results discussed with urologist and annual MRIs / biopsies/DREs. It was all pretty straight forward and I can't see any advantage in trying to do these at home? Personally I'd make sure you have an agreed treatment/AS plan

User

Posted 14 May 2020 at 21:20

Hi Tim,

People warn about over treatment, some men are said to be offered too much treatment, although I don't recall anyone on here saying they had it. They offered me AS with a template biopsy to appease those who didn't want to appear to be over treating I was told.

People also often say there is no need to rush treatment in most cases and it's slow growing. So you could be alright to put it off for a while.

Being very fit and healthy and eating a good diet and meditating is likely to have no effect on the main growth. It might make you feel better and be stronger to withstand treatment and symptoms. With a bit of luck might enable your body to resist further spread for longer although I don't know if that's official opinion.

Also on psa tests I'd recommend you go to the hospital and if possible to ring a Macmillan nurse for the result. GPs pass on the result via someone who has no idea what the result means and has a note on their screen saying if it's under 4 it's OK, even if you've no prostate and 4 would be very bad news. You'll then likely have to be referred whereas the hospital will bring you in.

My advice is be very careful. Once it's too late, it's too late, although it does usually take quite a while.

Regards Peter

User

Posted 15 May 2020 at 23:31

Hi Tim

Welcome

May I ask how old is your brother and how long has he been on AS?

See my profile .

Re. ProtecT study.

Have you looked into the data ?

Active treatment of PSA-detected prostate cancer can reduce the progression to metastatic disease.

Those on AS progressed to meta. more than RT and/or Surgery.

Headline 10 yrs in my opinion is misleading. I remember it on the news networks.

AS is perfectly fine as Lyn posts. You need to keep in control. Why are you contemplating home tests ?

This disease as we all know is unpredictable.

Regards Gordon

User

Posted 16 May 2020 at 19:12

Hello Gordon, my brother is 53 and he as been on AS about 6 months, however, he is not sure if he will remain on it since he contracted sepsis after his first biopsy and was 5 days in hospital.

Thanks for the heads up on the data. I'll look into it.

Regards

Tim

User

Posted 16 May 2020 at 23:18

Hi Tim

Both young. Although I didn't get sepsis my one and only biopsy TRUS was actually more uncomfortable for longer than my RARP .

I now realise I probably had Proctitis on and off for about a week or longer. I didn't know any different as I thought this was normal.

Post RARP bowel was fine. In fact severe constipation.

Take care...

Edited by member 16 May 2020 at 23:26 | Reason: Not specified

User

Posted 23 May 2020 at 15:48

So, I ordered a home PSA test kit from ebay - £7.50 for two. It arrived really promptly with reasonable instructions. I decided to use both on the same day that I had a PSA test booked at my GP. The home test is simple to administer, just a pinprick, two drops of blood and mix in something called a buffer. The test can only indicate 4 results:

1 - Test not valid

2 - Result below 3

3 - Result between 3 and 10

4 - Result over 10

I did the two tests simultaneously for verification. They were identical and showed a result of between 3 and 10. My result came back from my GP as 9.2.

I conclude that, in this instance, the home test is reasonably accurate. Of course, further testing is required.

My PSA was previously 7 and I have yet to talk with my urology nurse about the result.

User

Posted 23 May 2020 at 15:51

One further issue. I had had sex the night before PSA testing. The following day, I find out that sex up to 48 hours can effect the result. Next time, no sex before PSA test!!

User

Posted 23 May 2020 at 16:04

But then you won't have a stable comparison - obviously, it will be more sensible to ensure you have an orgasm before the next and all subsequent tests.

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

User

Posted 23 May 2020 at 16:07

Unfortunately (or fortunately!) I only found out about sex effecting the PSA result AFTER taking the PSA test.

User

Posted 23 May 2020 at 22:50

Why can’t you ask your GP give you a number of PSA test forms so you can get checked yourself every three months or so?

Cheers, John

User

Posted 23 May 2020 at 23:42

Hi John, I am on active surveillance and therefore get three-monthly PSA checks. That was my second PSA test.

User

Posted 25 Jan 2023 at 13:20

Ah well, life moves on and some things become totally irrelevant. My PSA suddenly lifted up to 13.7, my relationship and sex life ended, therefore time to have surgery on 25th April 2022. It went as well as could be expected. Incontinence cleared up after about 2 months, erections are still poor but serviceable!

I am now in a new, very active and beautiful relationship (lucky me). But, and it is a BIG BUT, my PSA has doubled every 3 months: 0.025, 0.05, 0.14. This means that I will cross the threshold in 3 months time. A terrible disappointment. I have not had a discussion with my surgeon or team but it is likely I will need salvage radiotherapy this year.

Despite the disappointment, I have moved on. Emotionally, I am solid. I am doing fantastically well. I started a daily gratitude meditation and practice about 8 months ago. I built a powerful and incredibly positive mindset from this foundation of gratitude. My heart feels open. I am a more loving, compassionate and generous person than I was a year ago. My life feels better than ever. I have so many opportunities to enjoy this beautiful life.

If anyone is interested here is a link to the meditation that has helped me https://www.youtube.com/watch?v=xfD4HaBBc0I&t=1s&ab_channel=JessicaHeslop-ManifestbyJess

I wish all you men strength on this challenging journey.

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