Any advice/thoughts

User

Posted 12 May 2021 at 12:37

Hello all,

I’m a newbie just after advice if possible, I’m 57 active and like to think physically very fit. my story is during summer of 2020, I developed symptoms of needing to pee quite urgently and more often, not too much at night though, slightly weak flow, symptoms were intermittent. In January 2021 spoke with GP about it. DRE done couldn’t feel anything sinister but commented my probate did feel enlarged.

did PSA = 3.2 and was referred to Urologist who asked for re test in six weeks and put me on tamsulosin. And referred me back to gp. GP also did x ray of hip and pelvic area as I had slight pain in those areas - my job involves manual work, x rays revealed mild arthritis and wear and tear. Follow up psa was 2.8, I found the tamsulosin made me feel a little light headed although they did help with my flow. GP said to stop tamsulosin and also told me that my psa in 2017 was 3.0 which I didn’t know but anyway Symptoms haven’t changed really so early May did a psa test with on line company came back as 3.5 contacted gp and now being referred to urologist again. May be me over thinking things but hip and pelvic pain seems to be worse and seem to feel discomfort when I sit on hard chairs.

My dad had enlarged prostate and had a turp but they did find a small malignant area on histology. He went on til he was 89 though.

two blunt questions really - would my psa reading be higher if it is pca and it has spread elsewhere and anyone any ideas if bph can cause discomfort when you sit on hard furniture etc?

thank you.

User

Posted 12 May 2021 at 22:49

You can't track your PSA trends with tests done at different labs.

Where we live, all the urologists know that PSA tests done at Harrogate hospital come back higher than at St James's in Leeds. We tried it ourselves - one blood draw put into two phials and sent to the two labs - two different results

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

User

Posted 15 May 2021 at 11:14

Originally Posted by: Online Community Member

It isn't "the NHS" that doesn't bother, it is that your GP didn't request it

Whilst trying to get to the bottom of the IT problem I mentioned earlier. I asked the GP to check which one he ordered, he said there is only one box to tick on the form and it says PSA. I'm sure different CCGs may use different forms, but that is how it works where I live.

Dave

User

Posted 15 May 2021 at 11:28

My blood tests only report total PSA. As Dave says, there's only the one "PSA" box on the blood form!

Chris

User

Posted 25 May 2021 at 16:51

Thanks again Ivan.

all understood.
Good luck with your biopsy in June.

John.

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User

Posted 12 May 2021 at 21:04

Hi JDS,

We just had someone else post who did online psa tests, his were about 30% higher than the NHS ones. So don't read too much in to the 3.5 result. I think most people with bone mets have psa in the 100s or at the least well above 50. So i think you need to keep an eye on the psa. You probably have something wrong with your prostate, you probably even have cancer because most men have by your age, but based on those psa readings I don't think you have cancer that needs treatment.

Dave

User

Posted 12 May 2021 at 21:50

Hi Dave,

Thank you very much for your reply. Really is appreciated, it’s good to exchange thoughts with people who understand the subject and situation. This is such a good site.

I’ll see what the urologist says and go from there. I’m guessing it’s likely to be MRI and then possibly a biopsy depending on what the scan shows. All the best to you.

Cheers

john

User

Posted 12 May 2021 at 22:49

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

User

Posted 12 May 2021 at 23:29

Hi Lyn,

Thank you for your reply. Interesting as I have to confess I thought all labs would use the same systems and give exactly the same results. My GP was good in that I guess she could have delayed things to get a nhs test. See what the urologist says.
I’m going to learn a lot on this journey and
I feel really pleased that I’ve joined this forum

Thanks again.

KR’s

John

User

Posted 12 May 2021 at 23:57

Nothing could be further from the truth. Same sample tested twice could produce a slightly different result, same sample tested on two machines in same lab could give a slightly different result, machine noise can be significant at these low levels, acceptable tolerance range is around 5%

Your PSA may be higher in the morning than in the afternoon.

Having an orgasm in the previous 24 hours / prostate massage / a hard cycle ride in the preceding 4 hours can all temporarily raise the PSA.

Paying for a private test in between the NHS tests that are critical to identifying any trends is just wasting your money and potentially, NHS resources. Apart from anything else, your PSA drop to 2.8 will have been because you had started on Tamsulosin - it is perfectly normal for it to have now risen back up because the Tamsulosin was stopped. Your GP should have picked that up.

Edited by member 13 May 2021 at 00:08 | Reason: Not specified

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

User

Posted 13 May 2021 at 08:17

Morning Lyn,

Again, thank you for that information.

As I said it’s plainly going to be a steep learning curve for me. My GP said that tamsulosin would have no impact whatsoever on the psa test.
I’m going to keep a diary from now on to monitor symptoms as mine are relatively intermittent compared to some I read about on this forum.

One more question I do have is that I like to cycle and run is there any evidence that in particular cycling can cause more problems? Especially now I know something isn’t quite right?
John

User

Posted 13 May 2021 at 08:44

There's some evidence that professional cyclists have slightly elevated PSA levels, but that's being in the saddle 8 hours a day, every day. Recreational cycling is unlikely to have any effect on PSA.

Discomfort sitting on hard furniture is likely to simply be due to a bruised tailbone (which could be a result of cycling). Curiously enough I had an MRI scan last week for the same issue, in my case because having been treated for both prostate and kidney cancer there was a concern about bone mets. Got the results back yesterday: no bone mets, just evidence of "wear and tear". On my GP's advice I bought a donut cushion and that's helped enormously.

Best wishes,

Chris

User

Posted 13 May 2021 at 09:04

As Chris says, evidence a few years ago showed that professional cyclists had a slightly higher average PSA level but were at no increased risk of getting prostate cancer.

On the other hand, men who suffer with prostatitis may find that swapping to a prostate friendly saddle reduces the symptoms / frequency of flare-ups.

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

User

Posted 13 May 2021 at 09:11

Hi Chris and Lyn,

Thank you both.

I’ll keep the cycling going, I’m certainly not doing high mileage.

Good idea re the doughnut cushion.
If you don’t mind, I was going to ask about prostatis, do you know the main symptoms and does it show on any scans or how do they diagnose that, is it mainly by urine tests?

Cheers

John

User

Posted 13 May 2021 at 22:31

Hey John

Prostatitis was the absolute scourge of my life. Nagging supra pubic pain, weak stream, frequency of urination, outrageous pain at night, total inability to pass occasionally. Alcohol, cheese, spicy food would make an attack worse. All of these symptoms would wax and wane. Diagnosed by DRE (soft and boggy) and crp marker in blood test. Acute attacks would see me in hospital for IV antibiotics. Suffered for years.

Latest acute attack last September got me on the path to a thorough examination until eventually I had a biopsy as PSA was raised at 6.1. Boom, cancer discovered but not related to infections. Read my bio for the full info.

Prostatitis = misery.

Following Da Vinci RP March 18th this year, I’m on cloud 9, finally pain free and in remission from PCa - PSA <0.04.Histology revealed the cancer but also confirmed long- term prostatitis.

Cheers. Marty

User

Posted 14 May 2021 at 10:59

From about 2008 I had pain in my tail bone - uncomfortable if sitting for a long time. The Dr said nothing to worry about and they no longer x-rayed the coccyx. A physiotherapist said she could feel some warmth there and I got massaged a couple of times. Then the pain went away and is now only occasional. i was diagnosed with PC (PSA = 64) in February, but I don't think there is any link. Lets see what the CT scan in 2 weeks comes up with.

User

Posted 14 May 2021 at 11:06

Hi Marty,

Thank you for your reply.

sounds like you’ve also had a real time of it!

At the moment, I certainly don’t have symptoms like that.

I get aches/pain in lower abdomen area. A general ache around the pelvis. X ray done and shows wear and tear to sacroiliac joints.

I’ve got urologist appointment on 25/5/21 but that’s only a telephone appointment, obviously they’re very busy due to Covid-19.
Thanks again for your reply.

Cheers

john

User

Posted 14 May 2021 at 12:20

Yes, it was me that reported that my online blood prick tests were recording readings that were 30% plus higher than those taken by the NHS via a needle. The nurse suggested that pin prick tests were not as accurate as those taken by needle.

User

Posted 14 May 2021 at 13:32

Hi Oh Dear,

Thank you for that information. I also found quite interesting is that they said my free psa was normal but my calculated free psa was low which apparently could be a indication of prostate cancer?
I asked my gp about that and she didn’t know what calculated free psa was.

There’s so much to all of this isn’t there?

Thanks again.

Cheers

john

User

Posted 14 May 2021 at 14:55

Afternoon John

The NHS don't seem to calculate "free psa" and neither do some online blood test companies. My G.P. didn't know anything about it either.The first online pin prick test I took in 03/18 did and my free psa was over 30 % of the total psa reading, which apparently is a good sign. My psa with that company was 6.26, hence why I went to the doctors for a second opinion. They took a needle blood test in May 18 and my psa came out at 3.58. When I was phoned with the result I asked about the free psa, but was told by the GP that was the only information she had. My second online pin prick test, with a different company, was on 06/01/21 and that came out at 7.54. When I was phoned with the information I asked what the free psa score was but was told that they didn't test for that. I again went back to the doctors and my needle blood tests came out with a psa reading of 5.32 on 10/03/21 & 5.76 on 12/04/21. Hence my referral for an MRI scan and my subsequent referral for a biopsy.

My research back in 2018 suggested that a low free reading as a percentage of total psa was a further suggestion that cancer was present, but whether it, since the NHS don't bother to calculate it, means anything is anybody's guess.

Yes, nothing, including the psa readings, is straightforward when you enter the prostate cancer world

Ivan

Edited by member 14 May 2021 at 15:51 | Reason: Not specified

User

Posted 14 May 2021 at 15:58

Hi Ivan,

Thank you for your response.

That’s a really big difference between the pin prick and the needle test. When I speak with urologist I’ll ask about free psa and see what they say.

It seems to me it is a very ‘individual’ disease and definitely best not to over think things.

Good luck for your biopsy.

KR’s

John

User

Posted 14 May 2021 at 22:47

The free to total psa ratio is hyped as of some use when diagnosing but the NHS don't seem to be aware of it.

My psa tests were marked as "free psa" I asked my GP and clinical nurse, and the consultants secretary if I should be having "total psa" tests (I never got to ask the consultant himself). No one seemed to know there were two tests. The GP was good enough to chase up the lab, and eventually it was identified as a computer error which had been going on for years but no one noticed (except me). Anyway it turned out they were doing the correct tests just printing the wrong labels on them. I'm glad they don't make any other mistakes!

Dave

User

Posted 15 May 2021 at 00:56

"My research back in 2018 suggested that a low free reading as a percentage of total psa was a further suggestion that cancer was present, but whether it, since the NHS don't bother to calculate it, means anything is anybody's guess"

I don't think that is a reasonable statement at all. It isn't "the NHS" that doesn't bother, it is that your GP didn't request it in your case and when you purchased a private PSA test you opted for a straightforward one rather than the more complex test.

Private tests aside, it is for doctors to order the tests that they require for a sample. The lab doesn't run all available tests just in case someone asks later. Uros and oncos will request free PSA where the case presenting merits it, usually where a man has concerning PSA but biopsies and mpMRI have been clear. I can imagine that it will have its uses where PCa is suspected but there are clinical reasons for not doing a biopsy or perhaps to inform Court of Protection cases where a man with significant hospital fear or dementia cannot give full consent.

Free PSA is thought to be reliable within set parameters - the PSA is between 4 - 10. There is info on the NHS Choices website.

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

User

Posted 15 May 2021 at 09:43

Interesting though that my G.P. and some of the hospital doctors I spoke to did not seem aware of free psa as part of an overall psa test. And, both private tests I had were only offering what I actually got: the first one total psa with free psa & the second one total psa only. And the second test I had was some £15 more expensive than the first.

To further comment on free psa, the USA medical system (my brother lives in LA) usually tests for free psa where somebody's total psa is less than 2.4 but there is,nonetheless, some evidence (going to the toilet a lot etc) that the patient may have prostate cancer. A low free psa reading in such a case, though not evidence in itself of prostate cancer, would then usually result in a biopsy being performed.

User

Posted 15 May 2021 at 11:14

Originally Posted by: Online Community Member

It isn't "the NHS" that doesn't bother, it is that your GP didn't request it

Dave

User

Posted 15 May 2021 at 11:28

My blood tests only report total PSA. As Dave says, there's only the one "PSA" box on the blood form!

Chris

User

Posted 15 May 2021 at 15:05

I have studied this disease intensively on a daily basis since my diagnosis three and a half years ago, and the first mention I have heard of ‘free PSA’ is today. So no wonder GPs, who in my experience have limited knowledge of what they call PCa, have never heard of it either!

Free PSA tests are what you get from your GP! Don’t waste your time and money on any more postal thumb-prick tests.

You will have to wait ten days until your telephone conversation with the Consultant, and bear in mind Covid did not really impact on the urology department. My own surgeon had ops up to 80% of the pre Covid level at the height of the pandemic.

If they think there is any suspicion of PCa, look forward to loads more tests, scans and more waiting, so expect several months before you get a definite diagnosis and treatment plan. That should not be a problem as most prostate cancers are very slow growing.

Best of luck.

Cheers, John.

Edited by member 16 May 2021 at 04:16 | Reason: Not specified

User

Posted 25 May 2021 at 16:15

Small update. Spoke with urologist on phone today. Very helpful and I’ve got MRI of the prostate tomorrow. What does the MRI actually show and any idea how long results normally take?

User

Posted 25 May 2021 at 16:28

In my case the MRI scan showed that I have a 15 mm lesion on my 55 ml prostate. So, showed that I have a lesion (which is likely to be cancerous) and the size of my prostate- which is medium to large in size. My MRI scan at Addenbrookes was on 21/04 and I was phoned with the outcome of the MRI on 30/04. The result of the MRI has led me to being booked in for a TP Biopsy on 04/06.

Ivan

User

Posted 25 May 2021 at 16:33

Hi Ivan,

Really appreciate your reply. Did you have any injection or have to drink anything at all?
Thanks

John

User

Posted 25 May 2021 at 16:42

They did stick an intravenous drip in my arm which put in fluids of some sort or another, but I did not have to drink anything before going into the scanner. If you have not had an MRI scan before it is a strange experience as the space inside is very enclosed ( if you are more than 25 stone I was told that Addenbrookes use the Horse MRI scanner in Newmarket) and it is noisy (they put headphones on you to reduce the decibels). You spend around 20/25 minutes in the scanner.

User

Posted 25 May 2021 at 16:51

Thanks again Ivan.

all understood.
Good luck with your biopsy in June.

John.

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