Prostate Cancer

[Basil]

Andy, most of the drugs tried so far( Well the cheaper ones available, acording to the DOC.) react badly with me.

Bas

[Andy J]

Must admit I did have an allergic reaction to tamsulosin on one occasion, so have cut down the dose to one every two days. Frequency of night time issues only increases by 1 for the day I don't take the drug.

Did try going without the use of Tamsulosin but that increased the count to 4 trips during the night, so happy to live with the potential side effects of the drug.

[Basil]

Andy, what it did , as do most of them, is after about 2 days, puts me in a chair, hardly able to function, just want to close eyes and do nothing. Thats not me. Cant say it did any thing for my bladder either.

Finding life that revolving around the toilet pretty hard to bear at times.

Bas

[Andy J]

Sorry to hear that Basil. I came out in an itchy rash, like a heat rash which took 3 or 4 days to clear. Since then have not had any side effects. Probably need to talk to the doctor about a mini TURP which apparently means having less material removed.

[Keith Miles 2]

An interesting thread and hats off to all contributors.

Prompted by this thread, I took a look at the NHS guidance on this issue and it seems to be a difficult area in terms of the risks and benefits of tests/examinations.

It seems that the lack of clear consensus in this regard is the reason why there is no national screening programme.

So, for someone like me who is fairly healthy with no symptoms of Prostate Cancer, it would seem to come down to the flip of a coin in deciding whether or not to be tested and/or undergo an examination.

The coin, for the time being, is still in my pocket.

[Craig Carr]

Hi Keith (and all)

it’s shocking there isn’t a screening programme really

I’ve meant to post, and should have a lot sooner.

In late January 2020 I was talking to my GP on a completely unrelated matter. But Bill Turnbull’s story (plus this thread) had been in the back of my mind for a while so I asked for a PSA test. I had none of the classic symptoms I would add.

I have a fantastic GP who listened carefully and she said even though I have no symptoms if I wish to have a PSA test for “assurance/peace of mind” she would record her authorisation on my medical record. She talked me through the process and whilst she advised how unreliable the test can be, I should also read the info on prostate cancer uk/the nhs website. However, whenever I wished to have the PSA test, I just needed to book in for it.

I then had a PSA test a few days later which came back as 6.7. My GP rang me to say it was high (I think she said she was looking for 2.5 or less) but there’s often a “false positive” with the PSA test. However, she wished me to have a physical examination and MRI. She had an examination/MRI arranged for me (on the same day!) less than a week later at my local hospital.

I was told on the day of the examination that the prostate did feel “abnormal” but the MRI would give a clearer picture.

Mid Feb 2020: I received a phone call to say MRI confirmed an abnormality and could I attend hospital for biopsies under local anaesthetic to determine for sure. This was arranged the following week. 26 biopsies were taken.

10 days later I returned to hospital for the results. My consultant when he “broke the news” said of the 26 biopsies 12 were cancerous. Gleason score of 7. He asked why I had requested a test when I wasn’t displaying any of the “classic” symptoms. I mentioned this forum/thread, a number of high profile cases, and the support of my GP.

He was over the moon and said it was a classic case of why men should be proactively tested.

As a consequence of being caught early enough he felt it hadn’t spread to my lymph or bones and all current options were still on the table. He also said, because it’s such a slow grower, it could easily have been another 10 years before I developed symptoms and by then my options could have been severely reduced.

Subsequent bone scan (which he arranged for the very next day)was confirmed to be clear.

All the options as mentioned previously by others within this thread were explained. However, I made the immediate decision for a prostatectomy and thanks to being caught early was a perfectly feasible procedure.

6 weeks later I had a successful prostate removal via a Davinci robot. A massive shout out to all the staff at Freeman Hospital, Newcastle. I will be forever grateful to 2 absolutely great consultants (Professor Naeem Soomro and Mr Bhavan Rai) plus all the other surgery staff and all nursing staff on ward 3 Freeman Hospital. I was home for recovery the very next day.

A cross section of lymph node was also removed for microscopic analysis to make doubly sure the cancer was contained to just the prostate. The subsequent histology analysis of which confirmed this was clear.

A subsequent post-op PSA retest came back as undetectable (well 0.03)

So from mid Jan 2020 to end of March/beginning of April was the timeline in my case from diagnosis to surgery. In my case I have had (and continue to get) exceptional service from the NHS, I can never thank them enough.

I’m now on 6 monthly PSA re-testing for the next 5 years (first retest tomorrow) but overall feel I now have my life on track again.

All I can say is too ensure you get tested. I was just thinking the number of people on this forum is quite a relatively small statistical population but there’s quite a few of us with similar stories!!! So Don’t be embarrassed or afraid to ask for a test!. God knows where I’d be in later life if I hadn’t.

[PatMc]

Craig, I haven't been following this thread for a while but when I saw your name on it I read your post.

Good luck, & best wishes for a full recovery.

Pat.

[Eagle 899]

As posted in June last year, no symptoms whatsoever but prompted by this thread I requested a PSA test which happily returned ‘0.8 ug/L endorsed Normal - No Action’.

In the last month or so I have developed the associated night time pee problems and quite severe constipation, my GP has arranged another PSA test for next Monday, then will arrange a DRE etc.,

He thinks the constipation might be associated with the suspected prostate issue.

I’m nearly 73 and one of six brothers. None of the others have had any similar problems.

I’ll come back with progress…………….

Shep

PS Keith, suggest you take the coin back out of your pocket, just in case!

[Keith Miles 2]

Craig,

First and foremost, may I wish you continued health for the future.

Further to my earlier point, it is interesting to note your GP’s comments about “assurance and peace of mind” whilst also pointing out that the PSA test can be unreliable. Those comments would seem to echo the NHS guidance.

I would not, therefore, regard the lack of a national screening programme as “shocking” but perfectly understandable, given the apparent uncertainties and, as I said, the apparent lack of consensus regarding risk versus benefit.

As the guidance clearly infers, a false positive is not necessarily going to provide either assurance or peace of mind and it further infers that, in such cases, there is, in fact, a risk of subsequent unnecessary intervention that might itself create unnecessary trauma or negative effects.

I can well understand the view of those who were eventually positively diagnosed and for whom the decision turned out to be the correct one, however, I am wondering just how many have made the personal decision, or been professionally advised, to take a test and for whom the outcome was quite the reverse?

If I felt that the decision to take a test was a simple one, I would not hesitate nor, I suspect, would the medical profession seem hesitant to advise patients accordingly or similarly hesitant to introduce a national screening programme.

If things were clearer, I wouldn’t need a coin!

Edited By Keith Miles 2 on 08/10/2020 17:21:36

[David Ovenden]

Personally I feel it makes perfect sense to have a screening programme for prostate cancer. I quote from the Prostate Cancer UK website.

• Prostate cancer is the most commonly diagnosed cancer in the UK.
• More than 47,500 men are diagnosed with prostate cancer every year – that's 129 men every day.
• Every 45 minutes one man dies from prostate cancer – that's more than 11,500 men every year.
• 1 in 8 men will be diagnosed with prostate cancer in their lifetime.
• Around 400,000 men are living with and after prostate cancer.

The number of people diagnosed with prostate cancer has been increasing over the last 10 years. This might be because more people are having PSA tests and the population is getting older.

The cost of treatment for late diagnosed PC is very high and the suffering it causes to those with the disease and their families is not something that can counted in monetary terms. Early detection would save the NHS money, time, resources and avoid so much unnecessary suffering.

Whilst a single PSA test alone may be not give conclusive results. A yearly test would show up any rapid change in level . A DRE examination doesn't take long and gives more information. Adding an MRI scan in cases causing concern and you would pick up so many prostate cancer cases at an early treatable stage.

No one questions the efficacy of offering women regular breast screening with a mammograph and interpretation of the results by a trained specialist. Between 6 in 1,000 (for 45-49yrs) and 15 in 1,000 (for 70+yrs) screenings detect a cancer. But that picks up around 18,000 cancers a year. 40% of those detected are small and impossible to detect otherwise. So how many lives are being saved and how much suffering is being avoided and how much long-term, painful and costly treatment is being avoided through that process?

So for us men, why on earth is a similar regular screening programme not available. The technology is there, it could save lives. Prostate cancer is the most prevalent cancer, and can be treated if found in time.

I've been on the receiving end, as have many others on this thread, of various treatments to deal with PC that was not diagnosed quickly enough. We need to make our voice heard and push for a proper regular screening programme for PC. It is not a "waste of money" but is essential to avoid unnecessary suffering, costly treatments and preventable early deaths.

[fly-navy]

Posted by Eagle 899 on 08/10/2020 15:51:18:

As posted in June last year, no symptoms whatsoever but prompted by this thread I requested a PSA test which happily returned ‘0.8 ug/L endorsed Normal - No Action’.

In the last month or so I have developed the associated night time pee problems and quite severe constipation, my GP has arranged another PSA test for next Monday, then will arrange a DRE etc.,

He thinks the constipation might be associated with the suspected prostate issue.

I’m nearly 73 and one of six brothers. None of the others have had any similar problems.

I’ll come back with progress…………….

Shep

PS Keith, suggest you take the coin back out of your pocket, just in case!

Good luck Shep, hope its a positive outcome shippers.

[Keith Miles 2]

David,

I don’t doubt, for one moment, the statistics that you quote.

As for the comment regarding reducing the costs to the NHS, however, it seems to me that if there was a strong argument to support that, then there would be little or no reason not to have a national screening programme and, indeed, every reason to perhaps introduce one.

That said, NHS resources will always have limits which, of course, is the key factor behind attempts to minimise the transmission of Covid19 where, again, those likely to be most vulnerable are in the higher age group. And, as we are seeing, that issue is already having a negative impact on those needing other treatment.

I am in no way being critical and for background, my Mother suffered most of her life from health issues including bronchitis, pneumonia, neuralgia, arthritis and Parkinson’s disease. She died of cancer. My younger sister was born with a heart defect and died of a brain aneurism, at age 44, just one week after collapsing at her daughter’s wedding. My other sister currently suffers from rheumatoid arthritis which she developed in her late twenties. In my youth, I had four hospital stays as result of an eventually diagnosed kidney issue which, I learnt later in life, could have killed me!

Hopefully, I will take after my Dad who lived until he was 84 (despite having been a smoker for about 30 years) with no serious prior health issues until a heart defect in his final year prompted open heart surgery from which he did not recover, passing away in the ITU. Taking the emotion out of it both I and my sister whilst grateful to the NHS did both later question whether such a traumatic invasive and expensive procedure was cost effective in such a case. It is, of course, the classic moral dilemma and one that no doubt occurs regularly.

So, as for any test for prostate cancer, specifically, given the uncertainties and other factors, it has to be a personal decision and, it would seem, not one to be taken lightly without a good deal of thought about our personal expectations until such time as a more reliable test comes along.

[Keith Evans 3]

My experiences .

I went for a PSA test approx . 11years ago .I had no symptoms at all but my father had it diagnosed in his late 80's .

A few days later I was contacted . I was informed that I had a count of 8 and to visit my doctor as soon as possible .

I had the digital examination etc . and nothing abnormal was found . I was referred to my local prostate cancer clinic .

Over the next 18 months I went in for 3 biopsy tests .The first two ,10 samples taken every time , showed all clear .

My count had now risen to 24 .It is important to note that although there is limited accuracy on the test itself it is the differences between each test which is what the experts are looking for .

My third biopsy only showed cancer on the last sample taken . How lucky was that as it would have been another 6 months before a next biopsy was due .

During all this time I never experienced any symptoms at all .

Things moved rapidly from there on with MRI and CT scans being taken and being booked in for surgery .At that time there was a 3 month waiting list .

My personal choice for surgery was that I had the nagging doubt that other treatments may still have allowed the cancer to spread further .

5 years after the operation I was given the all clear .

My PSA count is less than 0.1. and it is now 7 years after the operation .

Every operation anniversary I reward myself with a nice bottle of expensive plonk.

I have to say that all the examinations and biopsies caused me very little discomfort . My advice would be to relax as much as possible and don't resist .

All the best to those who may be worrying .Have the test .

Edited By Keith Evans 3 on 10/10/2020 19:26:34

Edited By Keith Evans 3 on 10/10/2020 19:27:25

[Craig Carr]

Hi Keith Evans 3

Firstly, many congratulations on a successful outcome.

Thats exactly it. The Initial PSA test is the best we have to give the professionals a steer on the next steps. Thereafter, if applicable, subsequent testing (DRE, MRI, biopsies etc).

It was because of this thread (and I’d coincidentally also read Bill Turnbull advising us all to ask for testing) that I had that nagging/worry in the back of my head. I had the PSA test and the testing pathway thereafter confirmed cancer.

On Friday (Just gone) I had the first of my 6 monthly (for 5 years) “post prostate removal” PSA test. The hospital rang on Friday afternoon to say it was 0.02 and is therefore classed as undetectable. 

so exactly, if anyone’s worrying or is around 50 years don’t hesitate to be tested. As others have said if you are referred for an examination/biopsies it’s hardly any discomfort and you get well looked after (in my experience)

As the subtitle of this thread says “getting checked is better than dying“. Apparently it’s an awful way to go if it gets too advanced and there’s no reason for it be that way provided you do ask for testing.

Best wishes to all.

Craig

Edited By Craig Carr on 11/10/2020 07:26:57

[Keith Miles 2]

I do have to again pose the question that if it was felt, and promoted, that all males, particularly those in the higher age group, should be routinely tested for prostate cancer, and we all followed that advice, would the NHS be able to cope, physically or financially, given the numerous other demands on its services?

If there was a single simple, reliable and cost effective means of early possible diagnosis, as seems to be the case with, for example, bowel cancer, then that would certainly help to answer that question and would also certainly aid the decision making process for all of us.

Prevention is better than intervention, of course, but there is much about the various forms of cancer and the causes that, unfortunately, remains unknown.

I do agree that for those who are worried, or who may have cause to be worried, a test might be worthwhile.

At this point in time, I’m more worried about Covid19 and doing as advised to avoid it! Whilst cancers may be generic, at least they are not contagious! And there is NO current cure for the former which is also potentially fatal.

[Martian]

Just for info ,prostate cancer gives no warnings no symptoms until it's wreaked terrible damage to the body irreversible damage . On BBC 1 during the week a documentary was shown and is now on i player it is called surgeons: at the edge of life one of the featured surgeries is of a 75 year old very fit and active man who collapsed and subsequent investigation revealed he had advanced prostate cancer that had spread into his bones and surroundings tissue he was being operated on to try to preserve his mobility by inserting plates rods and a rod in his femur with new ball joint scary stuff operation was a success . Sobering stuff

Edited By Martian on 11/10/2020 12:45:24

[Graham Bowers]

I was recently diagnosed with prostate cancer after presenting for a test. I had no signs or symptoms, I just thought it would be a good idea following a chat with a friend - we are both mid sixties. I've been on hormone therapy for 6 months and have just completed a course of radiotherapy.

Hopefully I've dodged a bullet, as I did have a bone scan that came back clear.

I'd encourage any men in the susceptible age range to get tested.

[Keith Miles 2]

Posted by Graham Bowers on 12/10/2020 09:42:35:

I'd encourage any men in the susceptible age range to get tested.

Whilst I totally understand and empathise with such a view from those who feel that it had a positive outcome in their particular case, I’m not sure that “encourage” is universally applicable nor is it the position of the NHS.

There are many factors to consider and with the current state of knowledge and limits and risks of intervention, it has to be an individual decision. What might be the right decision for some might not be the right decision for others.

Currently there is no clear position that the benefits of medical investigations outweighs the risks in a sufficient number of cases for prostate cancer screening to be “encouraged” irrespective of its commonality. If it were otherwise, then the case for a national screening programme would be much stronger, even unarguable.

In the meantime, we can only hope, as in many other areas of medical science, that knowledge, prevention and treatments evolve over time and we must also accept that sadly , in many cases, this might never be achieved.

[DaveyP]

Hi All,

I've just (yesterday) had it confirmed that I have prostate cancer, luckily it is small and contained in only the left lobe of the prostate.

This diagnosis came about after I asked my GP for a Psa test as I hadn't had one for a few years, I'm 66 and have no symptoms. 

The initial test showed 7.1 and the GP requested another test 2 weeks later, this came back as 8.4, there followed a DRE and referral to the oncology dept at Bournemouth hospital. Another DRE and an Mri scan, then biopsies all this within 4 weeks of my request, very quick I think. I was told the biopsy results would take 2/3 weeks, but it was only 15 days from biopsy to getting the news from the consultant.

He has given me 3 options, Radiotherapy/hormone treatment, Prostatectomy or LDR Brachytherapy.

There has been quite a lot written here about the first two procedures but nothing about the third option, which to me seems the least invasive and reduced side effects.

Does anyone here have any first hand experience of LDR Brachytherapy ?

Thanks in advance,

Davey

 

Edited By DaveyP on 21/11/2020 12:48:56

[Phil Brooks]

It's now nearly nine years since I was told, on my 70th birthday, that I had prostate cancer. I documented my experience in this thread. My aim was then, and is now, to encourage every man over 50 to seek a PSA test. OK, I know it's not 100% accurate, but it is the first step in a process that may just save your life. How many of us are going to refuse the option of a Covid-19 vaccine because it isn't guaranteed to give total immunity to every single recipient? I appreciate that the NHS is overloaded just now, and that it will be difficult to persuade a doctor to authorise a test at the moment, but this situation is temporary, and will pass. If you have any doubts at all, please discuss them with your doctor. In my own case my PSA began to rise some four years ago, but a course of radiation therapy at the Christie hospital was effective, and my now annual checks are consistently <0.01. The mantra used to be "Don't die of ignorance". To that can be added "Don't die of embarrassment".

[Cliff Bastow]

To lighten the mood slightly,

When I was diagnosed with an enlarged prostate the doctor gave me a fact sheet of things that would help, like cutting out coffee, ect.

Going through the list with my wife who said she wanted to help, we came to the line that said frequent ejaculation has been shown to help prevent cancer she turned to me and said "you are on your own with that one"

Was that permission I ask?

[Phil Brooks]

[Dave S.]

Just to add to the pleas to every man to get regular PSA tests - I had one as part of a general check-up about six years ago, and was told I had a high PSA level (I didn't even know what it meant!), had a second blood test, trip to hospital for a biopsy, all the while thinking it was a waste of time as I had no symptoms whatsoever - but it turned out I did have prostate cancer and a few weeks later I had a prostatectomy. Not a great way to spend a day, and the two weeks after that weren't too much fun either, but five years later I am still cancer free, and still making and flying models.

[Ben B]

As a GP I personally recommend anyone "of an age" to get tested. I'm not alone, all the local urologists I know think that, while not perfect, the PSA test is the best practical screening test going. People get hung up about DRE but truth be told it's pretty inaccurate and I tend to personally only do it if I think the urologists will quibble without it. It used to be that a high PSA inevitably resulted in mulitple (template) biopsies. No longer the case. PSA ratios and multi-parametric MRIs mean that biopsy is not always needed and, when it does, it can be far more targeted. No screening test is perfect.....

[Martian]

Recently had a MRI to check progress had a letter on Friday to say no noticable change in cancer area so that's all good   Take care chaps