Mystified

User

Posted 17 Jan 2016 at 21:16

Hi Brian

Does seem strange you don't seem able to get an MRI scan, yet you have been offered radiotherapy. In view of that they must feel that radiotherapy would be of some benefit and I would agree with that. I would see it as being a case of prevention is better than cure, ie prevention of the prostate cancer progressing. If it were me I would suggest you seriously consider having the radiotherapy. You would probably need to have hormone therapy for about three months prior to RT, then continue on it while you have the RT. As regards side effects my own experience of it was that those who were having it while I was, and who had localised prostate cancer and low PSAs had very few if any side effects. Whereas another chap and myself with high PSAs and locally advanced prostate cancer had noticeable but manageable side effects. You would have a CT scan as part of the planning for radiotherapy, but it probably would not give the same amount of image detail of any problem areas as an MRI scan.

Another option for you would be to follow a very healthy lifestyle, which I realise you may be doing anyway ie. healthy diet including cutting down on or cutting out altogether meat and dairy products, taking various supplements and engaging in active daily exercise. Good luck whatever you decide to do.

Richard

User

Posted 17 Jan 2016 at 22:37

Hi Steamboat,
great news that your PSA has stayed the same as before. Perhaps the scan isn't so important after all - if you ever decide to go ahead with the radiotherapy, they will scan you before it starts anyway.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 26 Jan 2016 at 13:20

Interestingly todays Daily Mail (Tues 26th) page 45 has a discussion about whether a National Screening Programme ought to be set up for older men, over 50, in line with the breast cancer screening for women.
There are two opinions from opposing views.
The pro lobby is a Urology consultant who says that by the time he sees some men that have been referred by their GP. the disease is too advanced for treatment.
The anti lobby is a GP who says he has an interest in men's health (unspecified) who says he is 64 and never had a PSA check and thinks they are a waste of time as the results are unreliable.
Now if I was to take the opinion of a specialist Urology Consultant against that of a General Practitioner, I think that I know which one I would choose. I know that in my case if I had not requested a PSA check as part of a routine blood test my cancer would be un-diagnosed, as I had no distressing symptoms, and still do not have any that concern me.
I am however reconsidering my decision not to have EBRT when I see my consultant again in March, depending on what the next Blood test shows.

Edited by member 26 Jan 2016 at 13:24 | Reason: Not specified

User

Posted 26 Jan 2016 at 16:28

Hi Brian, like you I think it is obvious who to choose as far as opinion is concerned, the urologist has got to be more knowledgable than the GP so it is a no brainier.

Anyone that is anti PSA screen testing as a national checking device for PCa could be forgiven for thinking that there would be lots of men that might still have PCa but get missed by the test as it does not always find found and also hose that would have the test and unduly worry by the thought of having PCa.

I personally think that having the test as part of a screening programme would be, by far, a better way than not having it. At least it would be better than just waiting for some kind of symptom that would require the test at a later date.

Surely proactive is better even if some slip through the net!

Until some other test is found it is the best way forward.

Cheers all, Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 26 Jan 2016 at 17:49

Typical Daily Mail - what they fail to mention is that the number of women being treated unnecessarily for breast cancer, coupled with the number of false positives and false neagtives has led to an increasing view that the programme should be stopped. In actual fact, breast screening programme is an opt in as the PSA test is. A woman of a certain age receives a letter inviting her to book a mammogram but the letter is accompanied by a leaflet advising of the risks and possible drawbacks of being tested and/or being diagnosed. Men who want to campaign about the gender imbalance in cancer screening would be better drawing comparisons with the cervical cancer screening programme, which does not get much comment in the media as generally speaking, diagnosis is reliable and there doesn't seem to be much likelihood of cervical cancer being overtreated as it tends to be a tiger cancer rather than a gentle slow-grower. The other difference is that cervical screening can identify the pre-cancerous stage enabling treatment which is not too life-changing before the cancer has even developed. There is no equivalent for PCa.

I would never support a national screening programme for PCa but I would campaign for better training for GPs and automated invites that include a leaflet about the limitations of PSA tests and the risks associated with over-treatment in the same vein as the leaflet we receive as women. I would also campaign for GPs to be prevented from refusing a PSA test to a man who wants one.

If they ever find a diagnostic tool that is reliable and can identify which prostate cancers are the tigers and which are the pussycats, I will be right there in front of the Houses of Parliament with a banner. Even better, a test that identifies PIN with a treatment for PIN that does not involve removing the prostate. But I don't think we are any nearer that diagnostic test now than we were when John or dad were diagnosed.

Edited by member 26 Jan 2016 at 17:50 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 26 Jan 2016 at 18:39

I wholeheartedly agree with this.

''I would never support a national screening programme for PCa but I would campaign for better training for GPs and automated invites that include a leaflet about the limitations of PSA tests and the risks associated with over-treatment in the same vein as the leaflet we receive as women. I would also campaign for GPs to be prevented from refusing a PSA test to a man who wants one''

User

Posted 26 Jan 2016 at 22:08

Every so often the question of whether there should be a national screening programme for PCa comes to the fore and sometimes analogies made with women being screened for breast cancer. Simply put, if there was a National screening for PCa at 50, it would result in more men being treated,
with some at a more easily treatable stage but at the expense of more being treated whose cancer would not have posed a problem and thereby suffering unnecessary side effects. The same could be said for breast cancer. However, if men were screened at say 50 (or earlier for those men who would be at greater risk), they would at least be able to decide whether to have radical treatment, be monitored or do nothing. I must say I think it illogical to say that men should not be given this choice because of possible unnecessary harms yet argue that men should have the best treatment to cure their cancer, with severe side effects a very secondary consideration. Had a National screening program been put in place, a number of the men with advanced PCa, including some on this forum, would have been diagnosed earlier with better chance of longer lives that early diagnosis and treatment can provide. Of course with current knowledge, technology and testing at any arbitrary age, National screening would not help everyone but at least empower men to decide whether treatment risk advantage was worth possible harm. Isn't that what we diagnosed men all have to decide anyway? Would we rather not know how we stand - I don't think so in most cases? We say GP's should not refuse men a PSA test (along with DRE the usual gateway to diagnosis and possible treatment), so if all men asked for this,or were issued automatic invitations, the effect would be similar to having National screening. PSA tests and what they might lead to should always be explained and under a National screening program a PSA test would not be compulsory.

Reverting to Brian's situation, which is what this thread is really about, it has rightly been pointed out that he would have an MRI prior to RT. He could agree to this and have the MRI and see what difference that makes to his diagnosis and then say he didn't want to proceed with RT, immediately or at all and were there other options open to him. This way he would at least have a more complete diagnosis.

Edited by member 26 Jan 2016 at 22:31 | Reason: Not specified

Barry

User

Posted 26 Jan 2016 at 23:47

Well interestingly that some of our female contributing element have immediately gone on the defensive.
This should not degenerate into a gender based quarrel, cancer is a far more important topic than that.
Cancer is nasty, and is life changing, I know that, my Mother, Father and Wife suffered from the disease but only my Wife died from it in a far worse form than I currently have.
I do not agree that a National screening programme should happen, but as with the ladies if there is a family history then advice should be given that it might be a wise step for individuals, and no man should be denied a test if he requests it
I know from my social contacts and discussions we have, that quite a few are trotting to the loo in the night but they are in denial as to what problem might be causing this frequency.
My GP admitted to me that his specialist knowledge of prostate cancer was mainly gained by what he had gleaned from patients and following up on their cases, as he said the clue is in his title "General Practitioner" he deals with everything that walks through his door, male, female, adult or child so what must we expect.
Part of the problem with men is that we see it as though in some form or other it is questioning our masculinity to have this disease brought into the open, whereas most women are quite happy to talk about their breasts to anyone who will listen, however I do take on board the point about cervical cancer being definitely completely different from the diagnosis / treatment angle.
If we take my case as an example if it had been left to my GP I would still not know whether I had PC or not.
It was my persistence when the nurse was taking as sample of blood to test for sugar, that she include a request for a PSA check, that was what got the ball rolling.
Now approaching two years down the road, with no treatment other than six monthly blood tests. All the paperwork and information I was given deals with, and gives information on, 'localised prostate cancer' my question is this, how do they know it is still localised which is why I have requested the MRI scan which is being withheld so far. My PSA has steadily increased.
In summary, National screening programme NO we know the NHS cannot afford it anyway, but PSA check on request a definite YES, in my opinion.

User

Posted 27 Jan 2016 at 03:12

Hi Brian,

Agree with you that when it relates to health, the ladies are far more proactive in coming forward to confront issues than we men, not just for themselves but often by pushing their men to act. This reluctance on the part of many men to face up to problems and do something about it is one of the reasons why there should be a National Screening programme, otherwise the proactive ones are checked out while others lose the advantage of early treatment as they often leave it until things have reached such an advanced state that eventually they have to seek medical help. The main argument for not having a screening programme is because it would lead to a lot of overtreatment. The PSA test is not expensive, it is the need for expanded treatment facilities and appropriate medical staff that would be expensive and take time to implement because of additional demand. However, earlier diagnosis and treatment would mean fewer men would need the very expensive drugs and frequent appointments that they do now or at least these would not be required so early. So there is some set off there. As regards what the NHS can afford, this is a question of how much the Government is prepared to give it. Other comparable European countries spend more on health per capita and have more flexible systems and have better cancer outcomes.

To the best of my memory, it was in November 2009 that there was what was called 'The Great PSA debate'. Many people heavily involved with Prostate Cancer, charities and medics attended and the motion that there should be National Screening at 50 for PCa was proposed and seconded by two leading consultants and was opposed by two similarly well known consultants. The motion was carried overwhelmingly! Unfortunately it won't happen.

This is just in answer to your bringing up the subject and not with the intention of reigniting the discussion which has been the most contentious one I have seen on this forum, particularly in it's old format.

Barry

User

Posted 27 Jan 2016 at 09:55

My personal opinion is that national screening would be un-manageable due to cost and the numbers involved.

Any NHS initiative seems to end up top heavy with bods (planning paper consultants - not the medical ones) who earn the big money for stating the obvious and make the whole thing too expensive to put into action.

I heartily second the opinion that GPs need better training or awareness of the need for testing for those men who have family history or who present at the surgery with symptoms that could be PC related.

For a GP to state that somebody it too young for a particular cancer is plain wrong. Assumptions shouldn't be made like that.

My daughter in law lost a breast at 27, but she was too young for breast cancer
My daughter lost her bowel at 36 but it couldn't be bowel cancer because it's an old persons disease

A GP is a typical jack of all trades and master of none, why he should he be, it was after all his choice not to specialise.

There is a difference though in non specialising and a GP so tunnel visioned that he can confidently say to somebody it's a waste of time and NHS resources to test.

I'm not suggesting that PSA tests should be offered at a set age but that advice should be given to those arriving at a surgery with symptoms that COULD be related to a cancer or offered to a man who wants one, if only to put that man's mind at rest.

John has a slight arrythmia. It's never bothered him, he didn't even know he had one until he had a hip replacement and they mentioned it, but his GP wants to put him on warfarin which he has been resisting for years because he's quite happy with his baby asprin.

The GP told him that at 75 he would HAVE to go on it because of his age, irrespective of what blood pressure tests or his general health were showing. Where's the sense in that.

The NHS was born the same year as me and has grown old at the same time.
Getting older can't improve me but if only somebody would take control and say enough is enough with all the wasting of OUR money, the the good old NHS could have a new lease of life.

We can't control the winds - but we can adjust our sails

User

Posted 27 Jan 2016 at 16:56

I am sure we would all agree that GP's should be better trained in latching on to patients who may need further investigation but there are pressures on them to avoid scans and referrals so they are in a difficult position. Perhaps a better arrangement, as exits in some larger practices, is where appropriate, for a patient's regular doctor to refer him to a GP colleague more experienced or with special interest in a certain area of medicine. However, not all men exhibit symptoms of PCa, or at least until the disease has advanced. Brian here is one of them. I was only diagnosed - no symptoms, because I have a very different problem and my GP at the time, suggested adding a PSA test to other blood tests. So Brian and I were fortunate in coincidentally being diagnosed, though in my case by then the disease was already locally advanced so an earlier diagnosis would have given a better chance of cure. There must be many men who don't exhibit symptoms but have undiagnosed PCa, as they have no apparent reason to visit their GP's. So no matter how well trained such GP's are, by not seeing them, PCa will continue to advance in some men until it is too late for curative treatment. Such men would benefit from an invitation to be screened and awareness about PCa.

Barry

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