Men over 50, please read at least the first message - Prostate Cancer Testing

[Ian Morgan]

A few weeks ago I had a card through the door from our local Lion's Club. (for those outside the UK, Lion's Clubs do various charitable work in their local communities). In conjunction with the Graham Fulford Charitable Trust they were offering a day of free Prostate Cancer Tests at my local community centre. The PSA test involves taking a simple blood sample (a five minute procedure) and can give an indication of an enlarged prostate, which could have various causes.

 

I had not noticed any symptoms of any prostate problems, but a free, quick test on a Saturday morning just a short way from my home seemed to be a good thing. I booked my timeslot online and had the test.

Nine out of ten tests will provide a negative result, and you can get back to playing trains.

 

Two days later, I was one of the 1-in-10 attendees to receive a letter stating I had a positive result and should consult my local GP. A phone call to my surgery resulted in an appointment for a repeat blood test at the local hospital. This confirmed the first test results, and I got an increasingly rare appointment for a face-to-face visit to a doctor at my local surgery. A quick rectal probe confirmed I had an enlarged prostate, and the next step would be an MRI scan to see what was going on. Eight out of ten of these MRI scans do not find anything suspicious, so you can get back to playing trains.

 

Every hour, a man dies from prostate cancer. Most of these deaths could be avoided if diagnosed early enough.

 

I repeat, when I took the first test, I had not noticed any symptoms of any prostate problems!

 

Please, if you get the chance, have a PSA test. This can now be done at home with a finger prick test, or you can try to talk your GP into arranging one for you.

[Ian Morgan]

So, the next stage is an MRI scan. This was actually done at the local hospital on a Bank Holiday Monday. It involves lying still on a table listening to the radio for an hour while the machine makes loud hums, whirrs and bangs just to keep you awake.

 

A normal prostate has a capacity of about 20ml. Enlarged ones can go up to 200ml, and still not have any problems. As I said, eight out of ten of these scans find nothing suspicious, so you can go back to playing trains.

 

My prostate was 70ml, and there were two small lesions identified that were sufficiently suspicious to warrant referral to a Urology Consultant.

 

Lesions could be one of the following:
1. over 75% of lesions are nothing to worry about - go back to playing trains
2. benign cancers - go back to playing trains, but arrange some regular checkups
3. aggressive cancer.

 

To determine what the lesions are requires a biopsy. A biopsy is a 15 minute surgical procedure where about 10 samples of each of the lesions are removed from the prostate so they can be analysed. An ultrasound probe is inserted in the rectum so the sampling needle can be guided to the lesion locations indicated by the MRI scans that are overlayed on the ultrasound pictures. The needle is inserted between the scr**tum and the rectum.
 
It can be done with a local anesthetic, possibly with some sedation, or a general anesthetic. It does not normally require an overnight stay in hospital.
 
I had my biopsy yesterday and I am back to work (a desk job) today. Heavy or strenuous activity is to be avoided for a few days to avoid problems though.
 
As I said, over 75% of lesions are not cancerous. Those that are can be benign, slow acting or aggressive. There are various treatments for aggressive cancers, including Radiotherapy, Chemotherapy and surgical removal.
 
All these treatments are more effective the earlier the cancer is diagnosed, so, please, get tested.
 
I am not a medical man, and all the above information is just my understanding of what I have been told. For accurate information, listen to your GP and/or consultant.
 
I will get the results of my biopsy in the next two weeks, so my story will continue then.
 

Edited June 1, 2023 by Ian Morgan

[Jules]

I would totally agree with what you say about getting tested.  On international mens day (or whatever it is called) the company I work for has arranged visits from 'CHAPS' ( a mens health charity) who do the PSA test.  Fortunately for me, on all three occasions I have been clear, but for at least two of my colleagues, it has shown raised levels and subsequently required treatment. 

Neither of them showed any symptoms.

 

I hope your results come back negative/no treatment required and you can go back to playing trains!

[melmerby]

I have been PSA tested for many years (20+?), every 6 months.

 

My PSA reading is always over the trigger level. it has now been reset to "10". I have had internal cameras, biopsies, blood tests etc. and never anything wrong.

The most recent was late last year when I had an Ultrasound scan (for the first time), even that  was passed with nothing untoward.

 

So guys get yourself tested, a positive reading doesn't necessarily mean the inevitable but at least the medics will be keeping an eye on you in case of a change.

 

 

[enginelane]

A friend died of prostate cancer and the university we both went to is researching into a method of testing for the cancer in such a way it informs the doctors of the best routes for treatment. It is due to start clinical trials in 2024 subject to the official approval. I wrote a series of books called Railway Tales during  covid lockdowns passed on Royston South Yorkshire in the 1960s. The books are available in lieu of a donation to the research project. 

[davknigh]

I got my first PSA after turning 50 partly because it was recommended and partly because my dad had prostate cancer but died with it but not of it. The first couple were below the trigger point but the next one was over and I was sent to a urologist. He gave me the once over and given the size of my prostate and family history arranged a biopsy. It turned out to be positive but with a Gleason score of 6 which meant it was non-malignant. I was put on a regime called “active surveillance “ which involves getting the blood test every few months and a digital exam when I went to get the results. This went on for about 20 years until last year my PSA went over 10 and a subsequent biopsy came back as a Gleason 7 which meant the waiting period was over and we had to do something. Given my age is over 70 an operation was off the table and after a series of tests it was determined the best way forward was radiation at our local cancer centre. Twenty 5 minute treatments later I was done and after a few of months to recover my first PSA came back at 1.5 and the next one lower. Caught early cancer can be beaten. Don’t be shy, get the test.

I should add that all the people I dealt with were brilliant, kind, helpful and empathetic.

Cheers,

 

David

[Ian Morgan]

2 hours ago, enginelane said:

A friend died of prostate cancer and the university we both went to is researching into a method of testing for the cancer in such a way it informs the doctors of the best routes for treatment. It is due to start clinical trials in 2024 subject to the official approval. I wrote a series of books called Railway Tales during  covid lockdowns passed on Royston South Yorkshire in the 1960s. The books are available in lieu of a donation to the research project. 

 

 

Please can you explain how to make the donation and receive the book. I think the university website has been updated since the written instructions in the photo were recorded.

 

 

[enginelane]

Thanks for the information. I will check with my contact at the University. 

[enginelane]

23 hours ago, Ian Morgan said:

 

Please can you explain how to make the donation and receive the book. I think the university website has been updated since the written instructions in the photo were recorded.

 

 

I have had a reply from the university saying the website had been refreshed but donations to the link in the book was still valid and they confirmed donations had been received. I encourage people to donate via the link as that means I do not handle cash. I have lodged a call to the university next week to talk through the issue. Will update then. 

[Oldddudders]

Another testimonial for getting tested. I had for some years had occasional difficulty in the p**ing department, and while my PSA was lovely and low (4 is too high), scans showed the prostate to be enlarged, and life was increasingly difficult. In the end I saw a urologist at short notice, and within a week he had operated, to reduce the size of the prostate. As he predicted on seeing the PSA result, there was no hint of cancer. I was in hospital for about a week, albeit ambulant and able to go for coffee when I liked! 

 

That was in 2015. Now I see the urologist once or twice a year, after a PSA test, for a brief consultation and examination. You might reasonably ask what was the effect of the op. Well, I can go many hours without needing the loo, and still please a lady as effectively as ever, with full mutual gratification possible - but I am a lot less likely to sire a child. At 74 this is hardly a big problem...... 

[Blandford1969]

Back in the mid 90s we had a Driver who was an amazing painter who did all the lining and crests by hand. We used to make fun of 'Roy's gone for a slash in the tender again' . None of us really I think understood what was going on . He cared for his ill mum and by the time she passed and he was tested it was too late. 

 

He was taken too early, however we all at the time learned the message about PSA testing. In some places there are organised events such as. In my home town our local Lions group runs an amazing session with probably 40 nurses all taking blood samples. You get a result within a short period and it tells you your score and when you should next get a test or if you need to see a Doctor immediately. They have saved goodness how many lives. 

 

It really is so easy, quick and could save your life. Many of us just wish Roy had a test and was still around as he was an amazing mate.  

[enginelane]

I had a phone call from UEA Prostate cancer research project and Eleanor, the contact there, did confirm that although the website page had been refreshed the links as shown in my book do still work. However when I went on it was the new page. She did say that she could spot the book donations as they were mainly from Yorkshire. Suggested that could email the donations department and make clear who the money is for. However since the idea of the book was to raise donations for prostate research showing it was for Alan’s memory is a secondary aspect. Helping doctors decide the most appropriate treatment is the priority.

 

still have some copies. Story 1 - Call out - big derailment down at Monkton Colliery sidings, Stan Symthe is out on another job.

Fog - another shift as fog man for John Rider

 

Wash out at Royston Shed. Based on the sequence of events in wash out of an engine

 

The Colliery Yard Shunter - back at Monkton Colliery once more.

 

free post and packing.

[SRman]

I have to have a biopsy after my PSA level jumped recently, and a scan showed some small, suspicious areas that needed further investigation. The first attempt failed because I had a collapse three days before it was due and the anaesthetist refused to take the risk. I was very upset about that. They haven't given me an actual date for the rescheduled biopsy, but the surgeon and the anaesthetist are supposed to be phoning me this Monday, 19th June. 

The collapse was most likely caused by the medication the urologist gave me in preparation for the biopsy interfering/interacting with my existing blood pressure medication, causing a sudden drop in my blood pressure.

Fingers crossed I'll get the biopsy and it will produce a watch and monitor situation rather than cancer, but until I get that result I'm feeling rather apprehensive.

I wish good luck to all the others here who are undergoing treatments or awaiting results too.

[Chris M]

I agree that ius chaps should be regularly tested. I got tested just about in time as the cancer was just about to break out of my prostate. If it had broken out I would almost certainly not be here today. If I had left it say another 6 months before being tested I would probably be a gonner by now. The only slight symptom I had was needing to see more often which I thought was just an age thing.
 

I’ve had three years of a drug that stops testosterone and 20 days of radiotherapy and everything is currently fine. The three years of that drug had all sorts of unwanted side effects which hang around for a long time after the treatment has ended but never mind I’m still here. The great thing is that none of the treatment stops you modelling. 

[Chris M]

Prostate cancer is surprisingly common amongst us chaps. Last year three of us took a layout to an exhibition and it was only when we we there we realised that all three of us had had prostate cancer. We were just chatting about this when I remembered that the chap on the adjacent trade stand had also had it. All of us in our sixties.

[Tim Chambers]

Funny old world-I was diagnosed with an enlarged prostate  several years ago but examination and tests revealed nothing suspicious. Because of this (and several friends / relations being diagnosed with Prostate cancer) I have several times asked our local surgery for a routine "check up" PSA test and the reply has always been a refusal-no symptoms, no test. Is this normal NHS policy?

Best wishes to all, Tim.

(interesting-my last GP told me that the vast majority of men die with Prostate Cancer-note, "with" not "of".

[scottystitch]

2 hours ago, Chris M said:

The three years of that drug had all sorts of unwanted side effects which hang around for a long time after the treatment has ended but never mind I’m still here. The great thing is that none of the treatment stops you modelling. 

Chris, excellent to hear that you are all good now after your treatment.

 

I wonder, would you be prepared to expand on the side effects that you experienced? I personally find that it is much easier to deal with such things if I know what to expect, and sometimes the medical profession is quite vague about them.

 

I completely understand if you'd rather not elaborate.

 

Many thanks @Ian Morgan for starting this informative and thought provoking thread.

 

Best

 

Scott.

[Ian Morgan]

I have an appointment with the Consultant next Thursday to get the biopsy results.

 

Following the biopsy, I experienced many of the symptoms of prostate problems while healing from the surgery: varying flow rate, dribbling, urgent need to go,etc, but it is getting back to normal now.

 

I was warned I may experience blood in my urine and/or sem*** following the biopsy. I have not noticed blood in my urine, but sem*** is almost black.

 

Edited June 16, 2023 by Ian Morgan

[Simon Lee]

4 hours ago, Tim Chambers said:

Funny old world-I was diagnosed with an enlarged prostate  several years ago but examination and tests revealed nothing suspicious. Because of this (and several friends / relations being diagnosed with Prostate cancer) I have several times asked our local surgery for a routine "check up" PSA test and the reply has always been a refusal-no symptoms, no test. Is this normal NHS policy?

Best wishes to all, Tim.

(interesting-my last GP told me that the vast majority of men die with Prostate Cancer-note, "with" not "of".

 

According to the NHS website you should be allowed one if your over 50

 

https://www.nhs.uk/conditions/prostate-cancer/

 

 

[davknigh]

4 hours ago, Ian Morgan said:

I have an appointment with the Consultant next Thursday to get the biopsy results.

 

Following the biopsy, I experienced many of the symptoms of prostate problems while healing from the surgery: varying flow rate, dribbling, urgent need to go,etc, but it is getting back to normal now.

 

I was warned I may experience blood in my urine and/or sem*** following the biopsy. I have not noticed blood in my urine, but sem*** is almost black.

 

The after effects seem to vary with each test, it all depends on how many blood vessels get punctured and where they are. I had at least five biopsies over the years and no two were the same.

 

I’ve got my fingers crossed for you.

 

Cheers,

 

David

[Chris M]

12 hours ago, scottystitch said:

Chris, excellent to hear that you are all good now after your treatment.

 

I wonder, would you be prepared to expand on the side effects that you experienced? I personally find that it is much easier to deal with such things if I know what to expect, and sometimes the medical profession is quite vague about them.

 

I completely understand if you'd rather not elaborate.

 

Many thanks @Ian Morgan for starting this informative and thought provoking thread.

 

Best

 

Scott.

It’s good to read the official stuff as that will cover everything properly. Things I have experienced -

suddenly going very tired

hot flushes ( for some reason you don’t get any sympathy from women on this one)

harder to concentrate on one thing

muscles go noticeably weaker

its easy to do nothing if you let yourself. Doing nothing is of course very bad so I built a new layout

i still like to see a pretty young lady but I can’t remember why

 

A year after finishing the treatment all of these side effects are going and normality is returning.

[Phil Bullock]

It’s absolutely right to be sensitive to your prostates behaviour gentlemen. I currently have two very good friends who have aggressive disease and for whom the prognosis is probably not too good. 
 

But a few points for clarity if I may - please forgive the candid talk but I hope it may help put some things in to perspective.

 

Firstly terminology. There is no such thing as a benign cancer. The definition of a cancer is that it has the potential to spread from its original site by local invasion and/or distant metastasis (spread). A tumour (swelling) may be either benign or malignant (cancer) and an awful lot of prostatic enlargement is benign hyperplasia (increase in size) and is not cancer.

 

A PSA test will help start a process that will clarify that status but please note that there is no prostate screening programme for a reason.  This is because PSA is not sufficiently specific on its own to be used as a screening test and it’s use as a screening tool would lead to many men having unwarranted invasive procedures following a positive result …. And other benign conditions can give a positive result. I have had PSA tests - fortunately negative - and my GP had put it to me that if I have the test I have to accept the consequences should the result indicate further investigation is required. 

 

In the event of a diagnosis of cancer …. After further investigations …. Grade and stage will be ascertained. Grade is a laboratory diagnosis and  is based on the microscopic appearance of tumour cells . High stage is more aggressive cancer and is more likely to spread. Stage is a clinical diagnosis based on presentation and imaging and reflects the current state of the disease. It follows that high grade disease is more likely to present with a higher stage. 
 

Prostate cancer is in most cases hormone fuelled and treatment often involves blocking of male hormones. As we age these reduce any way …. I know mine have! I once asked an eminate prostate surgeon what he would do if he had a diagnosis of prostate cancer and his response was …

 

in his 50s he would absolutely take whatever treatment was offered 

 

In his 60s he would think very carefully before committing to treatment

 

In his 70s he would probably let sleeping dogs lie reflecting the comment already made above that many older men die with prostate cancer, not because of it. 
 

My own prostate is certainly enlarged as my GP had confirmed on palpation. I have always been notorious for a weak bladder so this certainly doesn’t help and neither do my cardio meds which seem to have a diuretic effect and increase my urine output. But I have decided to soldier on as long as I can cope and tests remain negative. 
 

It’s a biological fact that we will eventually all pass on - sorry! Healthcare can’t save lives but it can prolong them. Therefore if you have any doubt …. Please seek medical advice. I hope none of us on here draw a short straw…,

 

 

 

 

 

[BR traction instructor]

I spoke with my doctor's surgery in Silloth re a PSA test (I am 57) yesterday and as a result, now have an appointment with the nurse on Tuesday next for same (blood sample required apparently). No quibble and exactly the service that I would hope for with the NHS.

 

BeRTIe

Edited June 17, 2023 by BR traction instructor

[georgeds]

Definitely get tested, and also if you do have problems passing urine and a low PSA result, do not take no for an answer and push for a diagnosis. Most forms of prostate cancer are identifiable through a PSA test, but not all.

 

I lost my dad last year to prostate cancer, he was 56 when diagnosed and died in his 58th year. His PSA was very low and within safe range, despite having enlarged prostate and problems passing urine. Due to doctors' insistence he did not have cancer based solely off PSA test, and the ensuing back and forwards before he was finally sent for a scan, the cancer had chance to spread to lungs and liver.

[Phil Bullock]

1 hour ago, georgeds said:

Definitely get tested, and also if you do have problems passing urine and a low PSA result, do not take no for an answer and push for a diagnosis. Most forms of prostate cancer are identifiable through a PSA test, but not all.

 

I lost my dad last year to prostate cancer, he was 56 when diagnosed and died in his 58th year. His PSA was very low and within safe range, despite having enlarged prostate and problems passing urine. Due to doctors' insistence he did not have cancer based solely off PSA test, and the ensuing back and forwards before he was finally sent for a scan, the cancer had chance to spread to lungs and liver.

Thats horrible! A very short straw….