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Just in case anyone is interested - reasonably accessible summary.
Now back off to the other PSA thread to spend some money no doubt!
To add to nicks contribution there was an excellent discussion on the topic on radio 4 last week, highly recommended https://www.bbc.co.uk/sounds/play/m0024vtd
I do not agree with the naysayers who claim that we shouldn't get tested and that it can lead to unnecessary harms. I've never once heard of a man declaring that he wished he hadn't been tested; that it led to further problems and regrets it all. I personally know many that are glad they were tested. Just wish I'd been tested earlier!
I know some of you have read it before, and I really should start writing again, but here is my experience of testing and things. I describe my experience of the biopsy in Post 5. https://adventureswithprostatecancer.com/cancer-journey/
It is interesting when reading these threads to note that all of us who have had positive prostate cancer diagnoses, including Sir Chris, are advocates of early PSA screening. I do not think I have see a single opposing view from anyone with Prostate cancer.
I’ve never once heard of a man declaring that he wished he hadn’t been tested; that it led to further problems and regrets it all.
We all come at this from different angles, based on our own life experiences. I respect your views Stanley and I know you have a good deal of insight based on your own experience, I have read your blog and previous posts on the subject and learned from them.
However in regard the quoted bit of your post above, if treated they would not necessarily know enough to have regrets. There is evidence that in the past, over diagnosis and treatment has left some men with symptoms such as incontinence, impotence etc. when they had low risk tumours which would probably not have caused them an issue. The wider use of MRI as well as biopsy in diagnosis has improved this, allowing a better understanding of the grade and risk of a tumour.
But even so, the choice of whether to be treated or go on surveillance if you have a low grade tumour is down to the patient. Some may feel pressured to have treatment that may not be needed. Not pressured by medical staff, but by well meaning but ill informed family and friends and by themselves. I was in this position. I was given leaflets on all the treatment options, plus active surveillance, with no steer at all from the hospital as to which was best. I did a lot of research and took a lot of advice. AFTER I gave them my decision to go on surveillance, my urologist THEN said he would have done exactly the same in my position. I worry that a lot of men in that position will simply hear "cancer" and understandably want it nuked from orbit, and go on to experience side effects which may affect their mental health/quality of life which may not have been necessary.
Don't get me wrong, for those with more aggressive tumours swift treatment is life saving or life extending and absolutely necessary. I am specifically talking here about possible unnecessary treatment for lesser tumours. It is a thing.
This has been a good thread by the way, very useful to hear people's thoughts on this. @binners and @nicknameless, sorry to hear of your experiences and anyone else touched by this awful disease.
Yes, completely agree with your post. It seems then that, maybe, the process after testing is flawed. Patients need more guidance at that point perhaps. Not testing seems to be a case of "ignorance is bliss"... until it isn't and it's all too late.
I guess that my experience has allowed me to meet lots of men who have prostate cancer. Most have been lower grades that have been cured, although probably half of those do report having problems years later... urinary retention and erections in the main. Yet, they remain glad that they were tested and treated. Can't comment on how many were symptomatic or otherwise though.
Most of the stage 3 or 4 guys that I've met describe being asymptomatic at diagnosis; their cancer being discovered following other problems. I don't think I've yet met a chap who has been diagnosed in an early stage that has then progressed to stage 4. Maybe that's owing to effective treatment or it's old buggers that die anyway?!
Yes, completely agree with your post. It seems then that, maybe, the process after testing is flawed.
That's been my take-away from this. Being tested and finding out early seems like a no-brainer but there are potential unnecessary harms thereafter. It seems that there should be something else between test and treatment.
Very good points! Its not difficult to get information on what type of tumour you have and whether or not there is a risk of it getting worse, spreading and leading to Chris Hoy's sad state. Monitoring will give the medic's the data they need to let YOU make the best decision regarding treatment.
My NHS doc has just told me 'no' to my request for a PSA test. **
I sent back the link from the Prostate Cancer website saying it was my "right" to have a test on request. (That sounds more militant than it was.) Got no response.
So is this something I can do privately? How?
**They also hilariously said no to stopping a recurring yearly blood test which is on their system in error. I thought they might be grateful to me for pointing out their admin error but no....
To add to nicks contribution there was an excellent discussion on the topic on radio 4 last week, highly recommended https://www.bbc.co.uk/sounds/play/m0024vtd/blockquote >
I've listened.
There seems to be an awful lot of "making the case" agaisnt PSA testing. At one point the guy says "for a few extra months of life". It just sounds like a politican trying to convince people not to do something because there isn't the resource to deal with the fallout.
The people in my Dad's circle of friends (including him) didn't lose a few months of life. They were all active, healthy people in early retirement living the dream who's first health problem was the Prostate cancer that was detected when their bones started aching and killed them. None had symptoms until it was in their bones. I really sense that they're letting blokes die to save the cost of MRI scans. Plenty of places abroad do routine PSA tests.
I just googled and symptoms:
"Urinary symptoms including frequent urination at night, poor urine stream, dribbling at the end of passing urine, or slow to start the urine flow"
Is all of that unusual? Do many people sleep 8 hours without get up for a piss?
Outofbreath - i am in spain so pay privately, i ve known the same doc for 20 years as i was insured and insurance used to pay, however now i just payg. Its 60 euros for psa, 200e for full bloods, cholesterol, liver function.
That includes the blood taking, analysis, review.
Do many people sleep 8 hours without get up for a piss?
About 15 years ago I used to sleep through the night. Not any more.
I'm due for a follow up at Urology just before my birthday for another look inside to find out why there's a good bit of bleeding just recently. Fingers crossed that it's something curable.
The best of luck for a good outcome @Sandwich. You're getting it all checked out which is a good thing.
It felt like my GP could have been a bit more delicate with the finger
As long as the nails are short it's a win in my book!
Oddly I've been getting dull aches in the region these last few days, but extends to my other 'region' too. I've tried to get an appointment but failed, try again in the morning. It's certainly a pain I've not had before, hopefully it's nothing sinister, perhaps a UTI.
I get up in the night most nights for a wee, but it's been like that for years for me. I'm 42 btw.
I always took the view that if I could go 8 hours without a pee, I was probably dehydrated.
I got checked after the flow/dribble became an issue. I still get up once a night maybe every other night. This recent discussion has made me more aware of it, I think, playing into my underrling general anxiety perhaps.
It’s certainly a pain I’ve not had before, hopefully it’s nothing sinister, perhaps a UTI.
Isn't the big problem with prostate cancer that there are no obvious symptoms until the person has serious issues peeing by which time it is very advanced?
I think pain in that region is indeed typically a UTI but I would still seek medical advice fairly quickly as I believe that left untreated a UTI can spread and damage your kidneys.
Do many people sleep 8 hours without get up for a piss?
I usually do. I guess the important word in your quote is frequent.
Finger test embarrassment: At 77 I've had these quite a few times. On one annual GP visit the male doctor had a female trainee doctor & he asked if I was okay with her being present. Said fine carry on. Wasn't expecting a finger test! Anyways, I get into position, knees bent etc. The GP explained to her how this was done by showing her how to insert a finger. He says don't go straight in all the way, just go until resistance is felt. Wait a few seconds (telling me to relax!) for the muscles to relax, then ease ever upwards. He checked me out & then asked if I'd mind let her have a go (yikes!). However, with this method I felt very little discomfort. Most of the other GP/consultant sessions just pushed straight in....
Isn’t the big problem with prostate cancer that there are no obvious symptoms until the person has serious issues peeing by which time it is very advanced?
The "classically described" symptoms are: poor flow, frequency, not emptying , not finishing, etc.. However, you are correct, lots of men who develop prostate cancer do not experience these symptoms. It seems that if the cancer develops from the centre of the prostate, then you get symptoms; from the outer edges and you don't.
I don't think aching in the area is a symptom of PCa., although I did occasionally get an odd sensation after having a poo: I look back and imagine it was probably the tumour (that grew from the lower edge of the prostate) pressing against the rectum as poo came through, then settling back down. Sorry if too much information... lol!
I also experienced some back ache, although I always have. (My spine was clear btw).
I had another symptom that has rarely been discussed, and I've never seen it linked with PCa, but that might be because it's never been researched or discussed! Here we go then... "Spaffing distance". What's your spaffing distance? As a teenager, mine would go halfway across the room. This reduced over the years until it didn't really go any distance, and just before diagnosis it only just sort of oozed out (sorry!). So I would suggest keeping an eye on your "spaffing distance".
I thoroughly expect our resident GPs to reject "Spaffing distance" as a symptom. Maybe an area for future research? Or just check it for fun anyway 🙂
“Urinary symptoms including frequent urination at night, poor urine stream, dribbling at the end of passing urine, or slow to start the urine flow”
Is all of that unusual? Do many people sleep 8 hours without get up for a piss?
Yes it is unusual and yes most folk go thru night without needing to pee. Thats certainly a symptom of something if you need to pee in the night. Not necessarily prostrate cancer of course
prostate cancer testing has high numbers of false positives which is why routine screening is not done. There are real harms from this. Therefore testing or not is a decision to be made with your GP - taking into account family history, symptoms, etc.
Just logged into my patient access account and I can see a list of tests and results, which one is the PSA/prostate test?
Is it a combination of test/results or just one result?
I am trying to get a phone consultation with my GP......
^^^ it is just one result, a number, and a comparison to a normal range. Bear in mind it is at best an index test so if not in normal range will be repeated after a month or so to see if any variations etc, before any further investigation.
Well, I had the deed done a week or so ago. Wasn't quite as bad as I thought, but never the less, glad I got it done. I've also given stool samples (sorry breakfast eaters) and bloods taken. My symptoms have subsided somewhat, so hopefully it's not sinister. Test results soon.
As a teenager, mine would go halfway across the room. This reduced over the years until it didn’t really go any distance, and just before diagnosis it only just sort of oozed out (sorry!).
Saw Paddy McGuinness' show at the weekend, and the subject of spaffing distance came up in a discussion on turning 50, rather than specific prostate issues. He reckoned in his 20s he could have reached the fifth row of the audience, now it barely cleared his knuckles.
I’ve also given stool samples (sorry breakfast eaters)
Assuming we've all finished breakfast now, I have a question. Never having had to provide a stool sample before, but it being likely to feature in my future at some point, how do you get a sample in the pot? What is the technique? Should I install a German style toilet with a ledge in preparation for the day.....?
prostate cancer testing has high numbers of false positives which is why routine screening is not done.
The current tests I'm doing are not something I'd do for shits 'n' giggles.
how do you get a sample in the pot?
Dump in a large piece of paper carefully positioned over the bowl (making sure it doesn't fall in the water) then taking a scraping with a (supplied!) spatula. Use spatula to scrap sample into pot. Voila!
A German style toilet would be a lot less stressful...
how do you get a sample in the pot?
Wait until you're in turtle mode, hold it there, and use the scraper.
Every day truly is a school day.
Where's that damn green puking emoji when you need it?
What is the technique? Should I install a German style toilet with a ledge in preparation for the day…..?
With the kit I get there is a piece of paper with adhesive edges you stick over the bowl and a small stick that you take the sample with and put it a holder. The holder is then double bagged and stuck in the post. The paper landing zone just gets flushed
I got my final result today - the ultrasound test. Nothing other than a distended bladder caused by the pressure as the slightly enlarged prostrate holds back “the flow” and a “small simple cyst “ on one kidney - apparently a very normal common thing and nothing to worry about at all.
So, overall diagnosis is slightly enlarged prostrate caused by getting older <shrug> so, good news.
So, overall diagnosis is slightly enlarged prostrate caused by getting older <shrug> so, good news.
Good news in the circumstances then.
Indeed. I think the message here is that certainly in out late 40’s and early 50’s - and I’m not one to use the Doctors often either - is that it’s wise to get this checkup done. With regards to bloods, abdominal, racial and urinal function I’ve basically passed an “MOT” which is fortunate albeit with slightly high cholesterol.
But, no doubt if anything had been wrong it would have been highlighted, and I / you would be in a position to deal with it, definitely with the time and effort it took
Don’t be stubborn, get checked before anything turn into something worse/irreversable.
2020 I was diagnosed with grade 1 prostate cancer, the surgeon wants to whip it all out, oncologist wants the months radiotherapy but I've just went for the monitoring as I'm 63
So many side effects, depression, self employed
Some think I'm being a wee bit daft maybe selfish
Blood tested every few months
Does anyone take a medication called Tamsulosin?
My GP has prescribed it for me, but I am reluctant to start taking it yet.
I took it up until December 2020 when I had a re-bore. It works well to allow you to empty out, but take it before bed-time to avoid feeling faint during the mornings, you do that bit whilst asleep.
The relaxation effect affects all of your muscles and you can end up light-headed if the blood supply is stuck in your legs due to the veinous system pump there not working at peak efficiency.
My dad has taken it for 20 plus years without a problem.
I take Tamsulosin. Does its job of making peeing easier & I’ve had no side effects at all, BP stays the same, no light headedness. I don’t know why you’d be reluctant to take it, but then my view tends to be that taking medication in general makes you better. I accept your experience may differ.
Yes, page 1 of this thread
Does anyone take a medication called Tamsulosin?
Yep, two years here, no issues. I take it before bed based on the advice about light-headedness, but never noticed a problem.
Does anyone take a medication called Tamsulosin?
Used to before I was lasered out. Never experienced any lightheadedness or muscle weakness but after a year or two on it it started making the arthritis I have in my hands much more painful. Was glad to get off it by then.
I took Tamusolin for a while but it didn’t’ make much difference. I’m now on solefenacin succinate which has helped alleviate the urgency to wee. I also take a natural cranberry supplement. I’m currently on 3 monthly bloods/PSA tests as my levels are above the threshold and rising due to having a benign enlarged prostate.
What's this laser or re-bore procedure for?? Scraping away part of the enlargement??
Do many people sleep 8 hours without get up for a piss?
I reckon i've not done that since I was a teenager more than a handful of times (except when I've been hammered).
I would caution people for issuing, or listening to medical advice from strangers on the internet - particularly about a subject so nuanced as this.
With regards to the usefulness of PSA testing - it's limitations are well understood.
The arguments I hear for NOT getting it done and the "harm" that it causes (including those in the papers linked above) are, in my opinion, intended to apply at a population level rather than on a personal level.
The test causes no harm, saying it does is misleading to a general-public audience.... it's a blood test. The harm that's being referred to is the harm associated with subsequent treatment, which may have been unnecessary given the trajectory of the disease in that particular patient (something that should be, and is, discussed at length prior to treatment) - but that's nothing to do with the PSA test - treatment decisions are not made on the basis of a PSA alone. My the time you are getting treated you've had multiple MRIs/biopsies, and detailed discussions about your options with doctors.
You also have to consider that any treatment is done in consultation with the patient - and they are always given the option to "wait and see" where appropriate. The papers linked above argue that many who opt for treatment die of something else/old age before their enlarging prostate becomes a relevant problem, and so would have been better to "wait and see", ergo: treatment was unnecessary/harmful. Their argument (on a population basis) was that these people would have been better not knowing they had prostate cancer - so therefore the screening/testing has done them harm.
Prostate cancer is so dangerous because it's symptoms are also associated with the regular growth of the prostate as we age, and most men will put-off making an appointment to have a stranger put a finger up their bottom (although this is obviously highly context specific) even if they have symptoms. So a simple blood test which, while highly imperfect, if done regularly can give an indication that there maybe something going on that's worthy of further investigation (more frequent testing, MRIs and/biopsy).
In my opinion, from a personal perspective you'd be mad not to get a PSA test done regularly. Worst case is that several elevated readings may prompt further investigation and nuanced discussions about whether treatment is warranted/advisable for you, best case is that it triggers discovery of a cancer that'll kill you in short order if not treated urgently.
I get mine done every year and will continue to do so - no jumping through (or fingers in) hoops here in Australia.
There are charities that do it in the UK in drop in events https://mypsatests.org.uk/