Prostate Specific Antigen.
It has become my mission to help spread the word about prostate cancer. If you are male and 45 years or older, then get on to your GP and request a PSA test. It's a simple blood test that takes just a few painless seconds, and you get the result within a day or two. You could also ask for a Digital Rectal Examination (DRE- finger up the bum) to manually check your prostate for abnormalities. Prostate cancer caught early is fixable; caught later it isn't.
My story in brief? Two years ago: 53 years old, fit and healthy, white, exercise and diet all good, no cancer ever in the family, no urinary symptoms other than a few rogue drops after weeing. Started to feel ill, hounded my GP, eventually diagnosed with Stage 4 (incurable) prostate cancer; maybe 5 years to live.
More here: https://adventureswithprostatecancer.com/
Ask me anything. Get it checked.
**** me, that's horrible. I am sorry.
I am 'only' 40 but my uncle and father have both had prostate cancer, so I got my GP to test my PSA last year. Fortunately fine for now.
I am not suggesting its not a good idea, far from it but NHS guidance is slightly different and cautious on PSA tests
Cycling doesn't increase it too much but worth letting the doc know. I was going every year for checks but thats gone since Covid, but the docs have been chasing me to go in. I am checked due to medication
Thanks for posting @stanley
It is a truly horrible disease and affects so many. Some of us have been relatively lucky, so far..
Thanks for the PSA and sorry to hear about what you're going through.
Can you check the prostate yourself? I suspect if I put my finger up there, it would just feel like I have my finger up there, with no further useful information other than a smelly finger.
Huge, huge sympathy to the OP and major major kudos for raising awareness and encouraging guys to be aware of symptoms and with symptoms to get checked out.
Unfortunately it's not as simple as just getting a PSA test, as FunkyDunc has said. Either way read this first:
Evidence is currently against all men getting a PSA test without symptoms. It does not save lives in general screening: check this from Cancer Research UK https://news.cancerresearchuk.org/2018/03/06/one-off-psa-screening-for-prostate-cancer-does-not-save-lives/
“The PSA test is a blunt tool missing the subtleties of the disease and causing men harm.” – Dr Richard Roope
Researchers at the Universities of Bristol and Oxford found that testing asymptomatic men with PSA detects some disease that would be unlikely to cause any harm*** but also misses some aggressive and lethal prostate cancers. This highlights the flaws of a single PSA test as a way to screen for prostate cancer, and shows the need to find more accurate ways to diagnose cancers that need to be treated.
And from their JAMA paper
In this randomized clinical trial comparing men aged 50 to 69 years undergoing a single PSA screening (n = 189 386) vs controls not undergoing a PSA screening (n = 219 439), the proportion of men diagnosed with prostate cancer was higher in the intervention group (4.3%) than in the control group (3.6%); however, there was no significant difference in prostate cancer mortality...after a median follow-up of 10 years.
Bloody hell.
I was only thinking this a couple of days ago. When we were at school, your life was over if you had the wrong brand of trainers. As you get older, there but for the grace of dog, we could have a fall which meant we'd never walk again.
Yep, all over that stuff these days. You can stick pretty much whatever wherever you like if it warns me in enough time to do something about it. One of the good things about getting older is you are no longer embarrassed about this stuff and can just get on with it (in hospital right now for a heart checkup. Nothing wrong but making sure)
Sorry to hear your situation OP, but as a GP to everyone else please don't just routinely get your PSA tested.
Routine PSA testing is not recommended for all men, because of the issue of false positives causing more problems than they prevent.
This may change in future as technology advances.
Contrary to popular belief earlier is not always better when it comes to the diagnosis of many cancers, prostate being one of them.
Be aware of symptoms of lower urinary tract problems, ie poor flow, problems starting and stopping, needing to go again just after you've been, and getting up multiple times in the night.
If you have these symptoms, especially if they're new or getting worse then speak to your GP. Ideally the one with the slimmest fingers.
Thanks for the responses.
I'm aware of the NHS guidelines around testing, but I don't buy into them for a single moment. I had NONE of the increased risk factors, and NO symptoms of any significance (most of my 50 years + mates agreed they had the odd rogue drop after weeing too).
GPs don't seem to like to test, as they don't really know what's best when faced with a slightly raised PSA. The following biopsy is deeply unpleasant and used to carry a fair risk of infection. The newer techniques carry a minimal risk (Transrectal vs transperineal).
And what if the person with the unknown super-high PSA level* doesn't get tested because his GP isn't keen? That's right, his cancer becomes incurable and he dies prematurely. Prostate cancer is easier to treat if caught early. NHS guidelines are influenced by cost, and also by people demanding unsuitable treatments. A 75 year old who has just developed PCa? Maybe don't bother treating... but the patient should be involved in that informed decision.
PSA scores that are significantly raised are a clear indicator that things are amiss. My oncologist planned most of my treatment from the PSA, although subsequent scans guided the radiotherapy. I've personally spoken with the leading professor at the Christie, Cancer Research UK and University of Manchester; he agrees that the PSA test is a good indicator.
Men in the UK have the right to a PSA test when they reach 50. Get the test done then you have greater knowledge. Men need to be proactive and take control of their health and potential treatment. Don't be put off asking your GP. I bet my GP wishes he'd tested me sooner... I certainly do!
For reference: PSA levels vary by age. Generally speaking, a 50 years old's should be 3 (ng/ml) or under. If it is slightly raised then, yes, there might be a dilemma. If it's 10 or higher, then you almost certainty have a problem that needs further investigation. In the words of my urologist... "Cycling along the bumpiest road you can find, with the most unsuitable saddle, might raise your PSA by 1 ng/ml".
*My PSA was 374. After the DRE, the urologist described my prostate as, "Grossly enlarged, lumpy and with a large protrusion". Further scans revealed the cancer had already spread to my lymph nodes. Not much doubt there then!
Hope you're still 'well', Stanley. As I think I mentioned last time you posted (at diagnosis?), my Dad was diagnosed with stage 4, and is still well controlled 5 years later.
I had a scare last year and have kept quarterly PSA tests going with the GP. Fortunately, they're ready and willing and keep the tests going with me. I was <1 late last year; luckily for me.
Top PSA, many thanks.
Hope you’re doing well and glad to hear it was identified.
I’d highly recommend anyone with symptoms or concerns about prostate cancer to speak to their GP, many have advice clinics for this where you can attend. If after seeing you GP, any tests they’ve done or sent you for and still worried or doubtful then yes maybe consider an Antigen test.
Not something just do routinely though.
NHS guidelines are influenced by cost, and also by people demanding unsuitable treatments.
Glad as an individual you had a good outcome.
However, it's not to do with cost of testing, it's to essentially do with the inappropriateness of testing asymptomatic men.
Currently, there's NOT a screening programme for prostate cancer because, as a disease or test, it doesn't meet screening criteria.
However, those with a few symptoms should speak with a GP to discuss...
DrP
stanleyFull Member
Thanks for the responses.I’m aware of the NHS guidelines around testing, but I don’t buy into them for a single moment. I had NONE of the increased risk factors, and NO symptoms of any significance (most of my 50 years + mates agreed they had the odd rogue drop after weeing too).
GPs don’t seem to like to test, as they don’t really know what’s best when faced with a slightly raised PSA. The following biopsy is deeply unpleasant and used to carry a fair risk of infection. The newer techniques carry a minimal risk (Transrectal vs transperineal).
And what if the person with the unknown super-high PSA level* doesn’t get tested because his GP isn’t keen? That’s right, his cancer becomes incurable and he dies prematurely. Prostate cancer is easier to treat if caught early. NHS guidelines are influenced by cost, and also by people demanding unsuitable treatments. A 75 year old who has just developed PCa? Maybe don’t bother treating… but the patient should be involved in that informed decision.
PSA scores that are significantly raised are a clear indicator that things are amiss.
100% with you on this, and i appreciate there are differing views being expressed by the GPs posting on this thread. I guess the difference is we both had raised PSA's with minimal symptoms and subsequent prostate cancer diagnosis and treatment.
Yeah, I'm 50 years old myself and I'm not having a PSA test, which should tell people something.
If I get symptoms then I'll get one.
No symptoms, chance discovery, stage 3. Only found during routine checkup/scan after bowel cancer diagnosis in 2018 (again chance discovery no symptoms). Unfortunately tests also picked up another small tumour in bowel. Glad to see the back of 2023.
100% with you on this, and i appreciate there are differing views being expressed by the GPs posting on this thread. I guess the difference is we both had raised PSA’s with minimal symptoms and subsequent prostate cancer diagnosis and treatment.
But on a population level, many more men will either have further invasive testing for zero disease finding (which can lead to impotence or incontinence), or will be reassured by a low PSA when in fact they have the disease.
Hence, anecdote isn't science.
But genuinely, it's great you had an early diagnosis, and the testing went in your favour.
I get it's emotive and challenging... Hence the politics surrounding it!
DrP
^^^^ yes, statistics and all that 🙂 I do recall having similar debates with at least one GP on here probably 9 years ago, not long after I had surgery, not sure if that was you.
for me, thankfully a good outcome, but tragic for many others.
stats and all that: giving all blokes over 50 a PSA test will not save lives, according to the best research on the topic as linked above:
In this randomized clinical trial comparing men aged 50 to 69 years undergoing a single PSA screening (n = 189 386) vs controls not undergoing a PSA screening (n = 219 439), the proportion of men diagnosed with prostate cancer was higher in the intervention group (4.3%) than in the control group (3.6%); however, there was no significant difference in prostate cancer mortality…after a median follow-up of 10 years.
It would be great if PSA testing on its own saved lives, but the evidence is that it doesn't.
But again, kudos to the OP snd others for raising awareness, so guys with symptoms get checked out including getting a PSA test (I've had one, back when I was roadbiking a lot. Possibly unrelated but hey.) And campaign for more research, more resources (fast MRI etc.)
Kudos Stanley for raising awareness and all the best for your ongoing treatment. I am heavily invested in this and have read a great deal about it and I am convinced by the arguments against universal PSA screening. However, I had my 3 monthly PSA test on Monday. It's high but stable. I was diagnosed with grade 1 prostate cancer about 18 months ago. I'm on 'active surveillance' for the time being and this is monitored with an annual MRI as well as PSA and probably more biopsies in future. Not ideal, but I'm glad to be 'in the system' and subject to monitoring in case it takes a turn for the worse. If you have symptoms or concerns, speak to your GP.
Sorry to hear your story Stanley. Currently on my own journey with no clear end in sight at present. Although my test results do not give too much cause for concern (PSA 3.3), rectal exam smooth normal prostate, ultrasound scan on testis show nothing of concern, I still have my symtoms of haematospermia (blood in my semen). At 57 years old and with a family history of prostate issues and having a lifetime of a "weak bladder" had me down the docs the day after finding red stains on my bedside tissues. This was only 2 weeks ago so very happy that everything so far has been promptly dealt with. However, still waiting to see a urologist and since other results show nothing obvious the urgency of that consultation has been lowered. I am hoping it is just a traumatic incident related to cycling though no idea how or when. No pain, no illness, nothing to show but some blood.
@welshfarmer. You're in the system though and they are working through the options which has got to be a good thing. Best of luck for a positive outcome.
hi Stanley - thanks for raising this - I was diagnosed with prostate cancer last year (in my late 50s) and similar to you no obvious risk factors - I was initially diagnosed at Stage 2 but upgraded to Stage 3 after surgery. I opted for radical prostectomy (prostate removal) - which I had in late summer and so far (6 months later) that seens to have worked. I did have symptons (problems peeing) but my reading around the disease shows there are many cases of asymptomatic cancers that get diagnosed late.
My GP was useless - my PSA was 10 - and they suggested that I might not want a referral because the process was unpleasant, they weren't wrong about that - the biopsy was brutal, but the alternative isn't great - and I think I got caught just in time although I won't really know for many years if its worked. I worry that GPs have effectively been indoctrinated (no pun intended) by the guidance and worry too much about false positives and unnessecary biopies - I don't think the NHS guidance has really caught up with the science and practice - PSA + MRI is pretty good
- https://www.uclh.nhs.uk/news/mri-scans-improve-prostate-cancer-diagnosis-screening-trial
- my MRI was conclusive (obviously that's just anecdotal)
It seems slightly mad to me that we have a test that can give an indication of a problem - but aren't using it to its full extent - yes the PSA test is flawed but it's a useful tool when combined with MRI scans and other lines of evidence (risk factors, symptons etc.) - plus it helps to establish a baseline condition against which changes can be evaluated and to collect whole population statistics that improves the understanding of prevalence
I'm sorry to hear about your experience.
I agree the mathematics of screening is often counterintuitive in that what seems like an obvious idea often turns out not to be.
I pay for psa test as I used to get it on private insurance, it's cheaper just to pay so i ve carried on. It's peace of mind and no issues, I 'll worry about a false positive if the need arises. I m sure I read the test has to be consistent as its literally parts per million, hence the need for regular tests to get a pattern.
I ask my private doc every year just to test what he s concerned about, late 50s, me not him, he tests for psa, cholesterol, kidney function, then blood pressure, weight and height. Over time all the markers are within range.
Hunting around on the forum I came across this - and OP really sorry to hear about your experiences. As you say, something men aren't good at remembering or getting checked; if nothing else it falls between the two stools of "I'm fine, absolutely nothing wrong with me" and "argh, I'm dying!" which are most men's only reference points for medical stuff.
And thanks for the blog.
The question I wanted to pose is - given the experience and medical insight on here - just how aware should you be in your mid-40s about this stuff? When does "ah, just one more pee before bed/ before we head out" tip over into "OK, better get that checked out"?
And what's the process for getting checked out - just presenting yourself to the GP's most attractive assistant and asking them to shove a finger up you/ demanding a PSA test/ saying "I've got no flow"?
For something so important it's not really signposted too well...
@nicko74, just be aware of your urine flow, and if it changes for the worse make an appointment with your GP.
If you've always got up once in the night, not much to worry about, if you suddenly start getting up two or three times a night, then that may be an issue. If you start having problems starting, or dribbling at the end, or not being able to get it to arc into the toilet, when previously it's been fine then you may also have an issue.
If you do develop these symptoms then make a routine appointment to see your GP and bring a specimen with you, and make sure you've wiped your arse properly beforehand.
If you don't have symptoms and you really want to go through the rigmarole of having a PSA +/- wiggly finger test then it is recommended that you are given one. But as all the doctors on here have said, we wouldn't bother because of the risk of false positives and it being shown to not be of any overall benefit.
That's excellent info, thank you!
If you do develop these symptoms then make a routine appointment to see your GP and bring a specimen with you, and make sure you’ve wiped your arse properly beforehand.
😀 Proper lol'd at that!
@nicko74 and others,
A quick online risk checking tool: https://prostatecanceruk.org/risk-checker?gad_source=1&gclid=Cj0KCQiA84CvBhCaARIsAMkAvkLbk8024fzzhvpMT-ehPrccrSTrTZ-FNBfeWYB-Ok3IQLsisA89cz0aAu0hEALw_wcB&gclsrc=aw.ds
And some NHS advice: https://www.nhs.uk/conditions/prostate-cancer/should-i-have-psa-test/
As I've mentioned before, I had no increased risk factors (other than being over 50). and I consider that I did have plenty of protective factors. I had zero symptoms yet I did have Stage 4, metastatic prostate cancer. Somewhere between 1:6 and 1:8 men in the UK will develop PCa (sources vary slightly in their estimates). Every bloke in the two PCa groups that I attend would suggest getting a test 🙂
As a doctor I wouldn’t recommend using that risk assessment tool. It’s very poor. Basically trying to scare everyone into getting PSA tests.
Prostate Cancer UK use some very dodgy tactics to raise money IME. Not least scaring lots of healthy men into getting PSA tests then them feeling obliged to donate.
I've spent a bit of time working with patient decision aids, and there's a nice website that includes an index of clinically verified patient decision aids from around the world.
I think this one is fairly good:
Here's the assessment of the PDA - https://www.healthwise.net/ohridecisionaid/Content/StdDocument.aspx?DOCHWID=aa38144
And this is the actual tool - https://www.healthwise.net/ohridecisionaid/Content/StdDocument.aspx?DOCHWID=aa38144
"... Not a Doctor."
One up the bum,
No harm done!
As a doctor I wouldn’t recommend using that risk assessment tool. It’s very poor. Basically trying to scare everyone into getting PSA tests.
Prostate Cancer UK use some very dodgy tactics to raise money IME. Not least scaring lots of healthy men into getting PSA tests then them feeling obliged to donate.
I wouldn't agree with any of that. You can't prefix statements with "I'm a doctor" and then expect people to believe your every word; it's not a superpower!
I just hope that more men get to know more about prostate cancer; its proliferation, potential tests and treatments. Too many men get this killer disease and have no symptoms. Men can make up their own minds on whether to get tested when they are better informed.
Men can make up their own minds on whether to get tested when they are better informed.
Being better informed means getting unbiased evidence-based information. The entire point of a patient decision aid.
Touch your toes,
Up it goes.
I wouldn’t agree with any of that. You can’t prefix statements with “I’m a doctor” and then expect people to believe your every word.
With all due respect, I’ll take the word of the person with actual qualifications over the word of someone without, every day of the week, thanks.
Without wishing to sound AT ALL patronising, I really do appreciate that the sensitivity/specificity aspects of ANY test can be confusing. And I fully appreciate that our OWN experiences can marr our views..kinda in the same was that a lottery winner can “of course give you the right numbers to pick to be a millionaire”…
Here’s an exercise i do with my medical students..it’s thought provoking..
”DrP has designed a test that will, WITHOUT ANY SHADOW OF A DOUBT pick up and identify ALL cases of prostate cancer. Ever… It’s very simple, and doesn’t even require a blood test”
Wanna know what it is? Does it sound like a good idea? Of course it does…
The test, with 100% pickup rate is… DO YOU HAVE A PROSTATE?
If the answer is YES, then you proceed with the next steps of potentially invasive testing/prostate removal..
Does it still sound like a good idea…EVEN THOUGH it’ll pick up every single case of prostate cancer..?
This is an example of a test that is 100% sensitive (as it’ll pick up 100% of cases of active prostate cancer). But of course… it’s not AT ALL specific..because the vast vast vast majority of people with prostates don’t actually have cancer.
The test is far too broad, and is performed on every member of the population regardless of symptoms, age, and other factors..
In a way, just performing the standard PSA blood test on men without symptoms isn’t a million miles away from this idea. You’ll OF COURSE find the odd chap WITH cancer, and manage them as needed. But you’ll identify many many men without cancer, or men with cancer that will never lead to ill health (yup..many men die WITH prostate cancer, not OF it)..
Once you develop symptoms, or have a strong family history, then you’re no longer in the ‘general population’ and the test becomes much more useful, because you’re already more ‘likely’ to have prostate cancer, given you’re now in THIS group.
DrP
many men get this killer disease and have no symptoms.
And for a proportion of them it doesn’t cause them any problems at all.
That’s a big part of the problem, for a proportion of men with prostate cancer the treatment causes more problems than the disease itself. The problem is we currently can’t predict for those of whom have prostate cancer whether it is going to be problematic or not.
To add to the above...
The reason we have screening for breast cancer in the UK is because the statement "if you have breast cancer, it's bad and you want rid of it ASAP" holds true.
That statement, in reality, can't be said for prostate cancers. Hence, at present there's no formal screening programme.
DrP
(Screening programmes look for disesase in people with no symptoms. if you have symptoms, then it's not screening..it's just 'medicine')
@DrP I think you might be surprised if you looked at the breast screening data?
As far as I’m aware there’s no evidence that overall it saves lives. It does reduce deaths from breast cancer, but at a cost of increased deaths from other causes.
It also comes at massive opportunity cost to the UK.
As far as I’m aware there’s no evidence that overall it saves lives. It does reduce deaths from breast cancer, but at a cost of increased deaths from other causes.
Will have a peek.. I mean it makes sense that if you don't die from breast cancer...you're quite likely to die from something else..eventually 😉
DrP
This thread isn't great reading.
For the couple of GPs on here, I'm sure you are remembering that @stanley has advanced prostate cancer with a poor outlook. Some empathy wouldn't go amiss, this is person, not a statistic.
Some other posters, self included, have been through prostate cancer diagnosis and successful treatment and have voiced that the current setup seems to miss too many cases.
I do recall starting a similar thread on here 9 years ago when I was first diagnosed. Lots of good came of my post, including making some new, dear friends and lots of great bike adventures with them. We also did a decent amount of awareness raising in the wider community.
However that thread, and related ones at the time, eventually deteriorated into some disappointing posts from some in the medical profession, bickering around PSA testing and the benefits or otherwise.
deja vu 🙁
i would challenge that it's certainly not bickering, and it's certainly not NOT showing empathy towards the individuals affected by the disease.
It's simply offering the current medical viewpoint on the topic.
It's actually no different to challenging (is that the right word..? maybe..) a post that said "you can immunise against COVID with tumeric and honey..don't have the vaccine".. some information spread via social media is well meant, but not factually correct. And probably for the most part won't lead to great harm, but sometimes it can.
Essentially, as a medical professional, I felt obliged (even though, maybe in this particular thread, it's not what some want to hear, or maybe not even my place..) to share the current evidence that unfortunately goes against the well-meant OP.
Read of that what you will.
And apologies if anyhting came across unsympathetic - Having never had a terminal or serious diagnosis, I can't relate, but can understand what you must be going through.
Best of luck with it all.
DrP clocking off...
As far as I’m aware there’s no evidence that overall it saves lives. It does reduce deaths from breast cancer, but at a cost of increased deaths from other causes.
Iirc (and I may well be wrong) this is based on a Danish study that has since been discredited.
@iainc the screening argument is incredibly complex, and not helped by the (IMV) overly emotive tactics used by Prostate cancer UK.
Stating the facts, which still hold true, on an internet forum, which by design, invites comment, is not displaying a lack of empathy IMV.
I did ask the mods to delete this thread for exactly this reason when @stanley started it. In such an emotive subject it becomes impossible to post informed comments without being accused of a lack of empathy for the mere fact of disagreeing.
