[Closed] Prostate cancer awareness

Project, early checks are the key. If they happen to find something and you catch it early then surgery is likely to be curative. Stick head in sand and get a late diagnosis and it may have spread outside prostrate, in which case cure is a lot less likely. Mail in profile if you want any info.

Cheers

iainc - could you quickly remind me/us of the test that can throw up false positives in regular cyclists?

Yeah, PSA, which is prostate specific antigen. From memory for guys in their 40's it's normally around 2-3. Mine was about 4.5 and rose to about 5.7 in a year. It's logarithmic. The absolute value can be taken as a false positive and cyclists can often be a bit elevated. Trending increases however suggest something untoward worthy of further assessment.

That's the one. Cheers!

Article was great, in fact I posted it in the NHS thread. It's time we really got all of this sorted out.

OP as far as I know PC has a very good cure rate if caught early (98% in the US I believe, sadly much lower here but that is due to people not getting checked)

Get the test every year. Try and look forward (something I am not so good at) and make the most of your life, we have inly got one and none of us know how long.

As Sanny says in the article, the NHS isn't setup for screening or even really considering this as a real issue for blokes under about 55. There is a whole raft of controversy about PSA screening and many GPs don't believe in it (there was a 'discussion' on here a year or so back) however my own view is that if there are any risk factors from genetics, or any possible symptoms, then the risk of a PSA test that could be wrong and an uncomfortable biopsy is a small price to pay to catch and cure a potential killer cancer...

If you want a more accurate PSA number no sex for 48 hours before the test and time off the bike too will give a better base number.
Due to the new hound and last template biopsy I haven't ridden a bike in 3 months (the shame). Last reading was between 6 and 7 which is low for me. I'm on watch and wait currently as my Gleason score was at the minimum (6) and the last template biopsy found no abnormalities. (Nurse practitioner says the first biopsy may have remove the cancer cells as it was 4% of one sample). Good news.
I hope the next biopsy will be 18 months or more away as it's a couple of weeks recuperation due to the general anaesthetic required. If you start down this road the first biopsy is done under local and involves a major dignity bypass. Email in profile OP if you want the full gory details.

Sandwich, good news and glad it's going well. Your stats also highlight the variations that exist. My PSA was way below yours, biopsy was Gleason 3+4, yet post surgery the pathology was a very aggressive fast growing tumour that was hopefully removed in time. The surgeon was surprised and he had done over 500 similar ops.

I'm in the US, and had my first PSA done this year due to family history.

Eye opener - Dr says that prostate cancer will affect 100% of men, IF they live long enough!!! 😯

Fortunately, a lot of it progresses very slowly, and most of it is treatable.

from my familys experience all i can say is that there seem to be an awful lot of tests and nmbers bandied about all of which prove absolutely nothing and as i hear so often '' indicators of something that might be happening''

to the op though.. have the test.. having been in intensive care and high dependency nothing beats the thought of '' i wish i d had the tests earlier..''

I thought the great survival rate in the USA was mostly early diagnosis of small harmless cases and that the number of deaths was basically unchanged despite lots of invasive and damaging treatment. But this was some time ago and I could be wrong.

We don't offer screening in the uk because it does not increase survival to do so. You'd just pick up cancers earlier, but often the treatment of early prostate cancer is watch and wait. So jambas suggestion to "get a test every year" is not really helpful. You just create a population of people who have been told they have cancer earlier but who will have the same outcomes as if they had only found out when they presented with symptoms. As we know, not everything the Americans do with regard to health is better.
If you have symptoms or are concerned talk to your doctor.

^^^ and the point I made which led to the article is that in general the U.K. NHS, including GP's are rather dismissive of blokes in their 40's coming to them with concerns.....

I will leave it at that doc as the original thread a year or so back covered and became a little negative, which would be unfortunate if replicated on this one.

Interesting.

I asked my GP to get checked last week as I have several symptoms of prostrate issues and because I am 38 a young GP basically told me it "couldn't possibly be my prostate" and it would be a urinary issue. Extremely dismissive and patronising about it too, she was. She made me feel foolish and embarassed for asking for help.

Really it could be nothing serious and she's hopefully right and I am perhaps being a bit over sensitive but is it any wonder people don't get diagnosed with initial interaction like that with GPs?

I will follow the process and see where it heads.

Unfortunately, I have had similar reactions when approaching GPs with mental health issues in the past too.

I love our NHS but it's frustrating trying to get help at times!

Extremely dismissive and patronising about it too, she was. She made me feel foolish and embarassed for asking for help.

This is the biggest problem with early detection; know it all doctors saying 'you are wasting my time with your worries'

A friend had some digestion issues last year, and was dismissed by the GP several times as having a poor diet and possibly IBS.

Now they have been diagnosed as having cancer of the small intestine that has spread to the liver.

Grim

There's been a couple of programs covering PC on R4 recently which may be of interest

http://www.bbc.co.uk/programmes/b086s7jr

Are there any early symptoms worth keeping an eye open for?

It's a difficult call. I was put off a PSA test at 50 by my then GP - false positives, risks with biopsy etc. I just thought I should get checked having reached the big 5-O. Seven years and many, many km later and the fittest I've ever been, I popped in to my GP to check on urinary frequency. PSA is one of the things they check in a blood test 'because of your age'. GP phoned me the day the results were back, PSA = 50! Cue urgent appointment with the urologist, finger up the backside and a discussion about what to do next. Take two weeks off cycling then have another test, said he. But I'm training for RideLondon, I said. Carry on then and take a break afterwards, says he. So, three weeks later after a RideLondon PB, I took a two week break, had the blood test and went on holiday (with bike, of course!). In the months since my first test, my PSA has risen to 56.6 and I'm off on the NHS cancer rollercoaster. TRUS Biopsy (with full dignity bypass) shows Gleason 3+5 in 11 of 12 cores but a PET scan shows it's contained. I was immediately put on androgen denial hormone therapy and scheduled for a radical prostatectomy. The drugs made me weary, moody and sweaty but I was able to work (self-employed) right up until the day before the op. That was five weeks ago now and I'm planning to start some part time work next week. Three weeks post-op I managed 30 mins on a turbo trainer on my normal road bike saddle and now I'm trying to do that every other day and slowly rebuild my fitness.

To address the OP, I was a PSA test sceptic (aided by my former GP) but there's nothing else. No, it isn't reliable enough to be used for widespread screening but it's the only measure they have. Back passage biopsies are being replaced by 'template' biopsies according to my support group. PC in my experience is largely symptomless. Peeing once or twice in the night was just what I expected (at 57) as someone who drinks a fair bit of an evening. If you've got family history (I don't, but my kids do now), get a test!

The problem is the disease not the doctors.
Prostate cancers are either indolent and just sit there never causing a problem, you will die of something else first, or aggressive rapidly growing and spread to bones and the rest of the body. We have no way of detecting which type it is in the early stages.
It does no one any favours to diagnose a cancer by screening that will not need any treatment. Just increases anxiety and potential for harm by invasive tests biopsies etc. That may change but screening of asymptomatic men is not beneficial. Look up wilsons principles of screening.
As for symptoms, exactly the same as "normal" benign prostate enlargement. I ask my patients to fill in an ipss
[url= https://en.m.wikipedia.org/wiki/International_Prostate_Symptom_Score ]International prostate symptom score[/url] and watch for rapid change in symptoms.
The office guidance from dh is that any man over 40 should have a psa test if they request one, but I always discuss the possible adverse effects of this i.e. false positives, harmful procedures etc. Nothing in medicine is 100%, I have seen renal cancer in a chap under 40- guidelines now would not include him in the 2ww suspected cancer pathway as it's too unlikely, but we have to use the evidence as best we can.

There was a very good edition of the bbc inside health podcast on prostate cancer recently.

Well worth a listen to understand current thinking on diagnosis and treatment.

In many cases it's recommended to just keep an eye on it, rather than remove straight away.

Edit: as the previous poster has already pointed out in greater detail. Still worth checking that podcast I mentioned, is probably on iPlayer.

Marvinpines, thoughts are with you, email in profile if you want any info. 2 yrs post radical prostatectomy here and there are at least another 2 of us, as per the article in the OP. Your story just confirms the idea had you had the test 7 yrs ago it would most likely have been caught earlier. As I said earlier, PSA single test screening is, as doc says not a good indicator, but regular tests and looking at increasing trends is a lot more indicative. Unfortunately your GP followed the same NHS guidance that has left others with a much worse condition that could have been caught earlier and with better outcomes.

But IANAD, so what do I know, eh... 😀

@doc you can see the other commets above. Why is our cure rate so low and the US rate so high ? I have my thoughts but it is a genuine question as I want to be educated.

Think of this. Under my work life insurance I have had a test every year since I was 40 (13 years now). Now business is business and hard nosed life insurance companies think an annual test which they pay for is a good idea.

I think for a GP to deny a test or belittle a patient expressing a concern is a disgrace. They are abusing their position as a monopoly service provider. I was personally very surprised to find that I had little or no choice as to which surgery I could register at. Monopoloy service providers are never a good idea.

I don't want this to turn into an argument on NHS, the information on PC shared above is very useful.

If people feel they need a test, demand one from your doctor or ultimately book and pay for a private test. If it means sacrifices elsewhere then that's what it has to be. Don't risk your health as a GP won't organise a test.

As stated above no man over 40 should be denied a psa test on the NHS. What I find in my experience is that people come in with no idea what a prostate is, no symptoms, just some vague idea that a blood test can detect cancer so they should have one. After discussing and education some decide they don't need or want one.
The fact that workplace health insurance schemes think it's s good idea has no bearing on the matter. They do all sorts of crap as "screening" for their employees that is not in their benefit other than people like you think it's a perk and it must be good because private healthcare does what the NHS doesn't.
Private health insurance schemes will just do as much health screening as someone is willing to fund, regardless of evidence. I imagine your employer just picked the gold plated scheme that cost the most. Like at the car wash when they charge an extra £ to wax the underside.

people come in with no idea what a prostate is, no symptoms, just some vague idea that a blood test can detect cancer so they should have one.

Bowel screening?
Cervical smear?

Psa testing increases detection rates but does not decrease mortality rates.
To answer jambas question about why the us have better cure rates. It's because they detect more cancers, even without reducing mortality rates overall it appears that you cure more as the proportion dying of prostate cancer compared to those known to have it is lower.
@scotroutes see earlier comment re wilsons criteria for screening programmes. Year 1 at medical school. No point screening for disease unless early detection and therefore treatment decreases overall mortality. its been studied extensively and is of course controversial but even the yanks don't recommend population screening.

Thanks doc, EDIT: posts crossed (genuine question why the massive differemce in survival rates UK to US ? I will accept dodgy stats if that is the case but difference is massive)

charge an extra £ to wax the underside.

🙂 hat tip ...

Clearly my employer didn't pay top £ as no wax and as far as I could detect no lube of any kind. Never had a PC blood test. I am a cynic (30 years in finance teaches you that), life insurers do a PC test as they believe it saves them money.

What @sotroutes says a million times.

Forgive me, I'm tired and even more grumpy than usual (bloody cold won't shift) but this

No point screening for disease unless early detection and therefore treatment decreases overall mortality

Or am I missing something more subtle?

You are confusing population screening a la breast cervical colorectal aortic aneurysms with personal health care i.e. you are worried/you have symptoms you see your gp who discusses with you and you come to a joint plan which may well involve tests that aren't offered to every member of the public routinely without reason
Any symptoms at all, or even just family history mean the pick up rate for cancer will be higher which changes the stats.
compared to screening everyone

Once again the survival rate is not a cure rate, if a harmless cancer is detected at age 40 then you'll be counted as having "survived" 5y at age 45 but if it's not tested for in the first place you'll still be alive at age 45 anyway.

Will have a chat to a freind in next week who is a retired gp and in his late 50,s so an at risk person probably,and then to see own gp. thanks for the advice, much grateful,

(genuine question why the massive differemce in survival rates UK to US ? I will accept dodgy stats if that is the case but difference is massive)

its the huge level of overdiagnosis in the states
infact no one gets prostate cancer like the americans!
https://www.ncbi.nlm.nih.gov/pubmed/12081758

5 ear survival is 95% in the US but 51% in the UK
sounds horrendous

but if you look at the stats 10% of 20yr old & 80% of men over 70 have prostate cancer when they die (of other things) and yet are completely asymptomatic

In america most of those men would be given a prostectomy and chemo for a cancer that they would never have affected them!

The guy who invented the PSA test now decries what is basically a huge money making scam by the American healthcare and insurance industries
https://www.amazon.co.uk/Great-Prostate-Hoax-Medicine-Hijacked/dp/1137278749

if you want to make a UK based prostate oncologist have a wobble out , mention Daniel Hannan being paid by the American insurance industry to spread a load of lies campaigning against what would become Obamacare
http://www.maggiesnotebook.com/2009/08/daniel-hannan-glen-beck-beck-on-prostate-cancer/

anyway, the purpose of the ride, and the article that Sanny put together, was to raise awareness of this as a disease that can affect younger men. It seems to have worked 🙂

Huge thanks to my mate Sanny, and Singletrack, for running with this and helping get the profile up.

Cheers

Iain

[i]A friend had some digestion issues last year, and was dismissed by the GP several times as having a poor diet and possibly IBS.

Now they have been diagnosed as having cancer of the small intestine that has spread to the liver.[/i]

In my last job, a colleague went through the same. Left a widow and 2 kids under 5.

So whatever happened to prevention is better than cure? My experience of the NHS is very much the latter approach. Treat the symptoms and assume they are benign and only be concerned after repeated visits when it's actually getting worse and potentially too late.

In the case of prostate cancer I was under the impression that if you catch it by the time you're getting symptoms then it's pretty much too late. Likewise bowel cancer.

I can understand the frustration by GPs with the "worried well", but is it not better to see mostly these kinds of people than those who are coming in with terminal conditions because they didn't worry in the first place?

I can understand the frustration by GPs with the "worried well", but is it not better to see mostly these kinds of people than those who are coming in with terminal conditions because they didn't worry in the first place?

absolutely

but see the other nhs thread and the fact that 1/3rd of GP places are unfilled at the moment, and many more are set to retire very soon,
just dont say the word crisis

tbh I wouldnt be surprised if the big improvements in cancer treatment weve seen over the last few decades start to drop off soon 🙁

A friend had some digestion issues last year, and was dismissed by the GP several times as having a poor diet and possibly IBS.

Now they have been diagnosed as having cancer of the small intestine that has spread to the liver.

Though this is a sad story, and I'm not aware of teh clinical facts of the case, it's unfortunate that if you 'look back' at any cancer case, at some point they will have raised simple and non descript symptoms such as abdo pains etc, and tests may not have drawn anything.
However, not everyone with simple non descript abdo pains goes on to have cancer.

Unfortunate as it is, there will always be some people for whom medicine fails to diagnose or identify a problem. Despite the best intentions of said medicine.

It's a %age game in the end.
Aiming to have a high %age of success, with a low %age of harm.

DrP

A friend had some digestion issues last year, and was dismissed by the GP several times as having a poor diet and possibly IBS.

Now they have been diagnosed as having cancer of the small intestine that has spread to the liver.

This sounds horribly familiar.
My brother was diagnosed with bowel cancer at 29, after repeated trips to the GP where he was told to 'go to bed earlier' and 'cut out the booze'
After the diagnosis his GP said 'I'm shocked, young men don't get bowel cancer.

He died 6 years later, after it spread to his liver.

Does make me worry about a lump I found under the skin, bowel area. Panicked, went to GP, "oh that's nothing". Hmm. It's still there. Okay it's highly likely it is nothing, but then I do the worst thing and consult Dr Google and already concluded I'm screwed as it's nasty black death cancer as by the time you can feel a lump attached to the bowel from the skin, it's game over. Or so the Interwebs would have you believe.

Anyway, told to just keep and eye on it in case it grows. As I say though, if that happens it's surely too late.

tests may not have drawn anything.

No they may not have done but on the other hand they may have done and the person could be alive. For the patient it's obvious which side I'd rather be on.

Doctors are professionals like any other, they make mistakes all the time. I find it quite staggering that we seek multiple opinions for so many things in our lives but rarely on medial issues.

About time I joined the thread. Iainc and I came up with the idea for the Grampian ride to promote awareness in men following his treatment and my (almost identical) history.

Me - diagnosed out of the blue, no family history no symptoms, aged 48. Picked up due to a routine psa when I was 45 that was a little elevated - 3.8 I think - then gp insisted I had another three years later - 6.9. The jump set the alarms off. Shows the importance of knowing roughly where your baseline should be.

Like Iain, initial diagnosis was low grade PC, watch and wait. I demanded a second opinion, that came back saying it's the aggressive version, it was removed a few weeks later and was readying itself to break out.

Full recovery saw us in the grampians eight months later.

We wanted to highlight the importance to us of the routine psa test, as above and in the article there is a persistent attitude it's only relevant in the elderly. I am here today as my GP didn't take that attitude. My consultant has treated guys in their late 30s with the disease. That's very unusual - don't panic - but equally don't assume it just goes for the old guys.

If you do ever go through it, we also wanted to show you can continue to lead a full life afterwards too. Hopefully the article demonstrated that. The surgery doesn't improve riding skills though.

My thanks go to Iain for getting me through, sanny for a great trip and article, the boys for such a great few days and all of you who supported us.

ononeorange - Member
Picked up due to a [b]routine[/b] psa when I was 45

How so, I thought it wasn't "routine" to test?

I never know figures of things I might have been tested for, they never tell me. Had a general load of tests from bloods and other after a visit to GP year or two back and they decided to do a load of general tests. No idea what for and no idea what the results are other than if I don't hear back then I'm alright.

And yet campaign sites for awareness of various conditions often encourage you to know your whatever score of whatever.

Even simple things like cholesterol. I've probably been tested a number of times and it's said you should know your score but I get no details.

The trouble with anecdotes (not the one above) is you’re never going to hear from people that they had an unnecessary procedure. Christ, if it was me (and it easily could be) I’d tell myself stuff like thank god I got checked and they caught it in time. Cognitive dissonance init?

As said upthread, US has the same prostate cancer death rate as here, but detects more and does something like twice as many operations. That’s a lot of people sent on a ‘cancer journey’, chopped about and left possibly impotent/incontinent unnecessarily. You don't hear this from them. (I saw one of our leading urological surgeons and surgical researchers at a research conference open a presentation with a picture of a speedboat. His US counterparts buy a lot of these.)

Anyway, until the research evidence changes, for me if I got worried for whatever probably weeing related reasons I’d go to my GP and take it from there.

Scotroutes - hello! What I meant by routine was that it wasn't done for any specific prostate reason. I had a minor surgical procedure for something entirely different and the doc chucked in PSA as I was over 40. Bloody glad he did.

[quote=ononeorange ]Scotroutes - hello! What I meant by routine was that it wasn't done for any specific prostate reason. I had a minor surgical procedure for something entirely different and the doc chucked in PSA as I was over 40. Bloody glad he did.

Gotcha! Sorry to be labouring the point here, just trying to get it clear in my head.

Onone thanks for the post. Have only ever had the finger test, maybe time to get a blood test to establish a baseline.

@deadkenny (apologies for going on about France again but I know their system) you get your test results here. Everybtest I have ever had I get the original and the doc gets a fax/email. This includes the MRI where I have all the photos, digital images and the diagnosis. When my Mum had an MRI she was told nothing apart from "resukts will be sent to the Doctor please make an appointment"

Doctors are professionals like any other, they make mistakes all the time. I find it quite staggering that we seek multiple opinions for so many things in our lives but rarely on medial issues.

+ 1

C4 were live broadcasting a colonoscopy yesterday, if anyone is intertested

'Huge leap' in prostate cancer testing

http://www.bbc.co.uk/news/health-38665618

The biggest leap in diagnosing prostate cancer "in decades" has been made using new scanning equipment, say doctors and campaigners.
Using advanced MRI nearly doubles the number of aggressive tumours that are caught.
And the trial on 576 men, published in the Lancet, showed more than a quarter could be spared invasive biopsies, which can lead to severe side-effects.
The NHS is already reviewing whether the scans can be introduced widely.
Prostate cancer is the most common cancer in British men, and yet testing for it is far from perfect.

jambalaya - Member 
When my Mum had an MRI she was told nothing apart from "resukts will be sent to the Doctor please make an appointment"

In my experience of numerous scans/x-rays from my (bike related) hospital trips, the stuff gets lost in the post. Ask the doctor at a later date and they deny all knowledge. Also, UK hospitals can't send information to each other. One time, Merthyr hospital (yep, BPW 😀 ) did x-rays and stuck a cast on hand, but had to give me the documents and CD to take to my local hospital & doctor. They can't do a referral there. Quickest way was (as they advised) go to A&E at local hospital. They said to see my GP for referral or I could wait 3 hours in A&E and get checked in like an A&E patient the they can refer to fracture clinic. Which I did.

that BBC article is good, and it sounds like a great bit of progress to reduce biopsy's, which are unpleasant at the least. May also help to reduce the naysayer element of 'intrusive investigation often for potentially little benefit' (if you buy that line...)

I thought it was a pity the guy they spoke to is 70 yrs old, again reinforcing the 'old mans disease' concept, which really isn't the case....