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Posted 24 October 2015 14:26:36(UTC)

Hello

I am new to this forum so please bear with me as I try to explain where I am at the moment.

I was diagnosed as having prostate cancer about 18 months ago. This was as a result of an update to my driving licence in order to drive a heavy motorhome. That upgrade required me to have a blood test for a blood sugar level check, whilst having it I requested the nurse to add a PSA check. The result was no blood sugar problems but a 7.4 PSA level diagnosis. the resulting internal and biopsy confirmed my worst fears.

Since then I have reading everything in the media about prostate cancer, and there is quite a bit in the newspapers, but the stories of individual treatments do not seem to follow a consistent course.

I am on the watchful waiting program. my PSA has now risen to 9.8 over a 6 month period. the only treatment that has been offered to me is radio therapy (35 sessions over 7 weeks) this seems to have so many side effects that I am not keen to try it. I wanted to go for seeding but I am told my prostate is too large. I understand that hormone treatment can shrink the prostate, would brachytherapy then be a viable proposition?

I have yet to see the same consultant twice and wonder if at the age of 76 they think I am not worth the effort it also makes me wonder with 2watchful waiting" what exactly we are waiting for! 

User
Posted 25 October 2015 16:01:30(UTC)

This is a quote from AG Adjacent Government on the internet and I only include it because the quote is from the CEO of Prostate Cancer UK so is presumably safe to browse.

The article was dated 26th May 2015 so fairly recent.

 

Owen Sharp, CEO at Prostate Cancer UK sheds light on the important work that’s being done to better diagnose and treat prostate cancer…

Most prostate cancers aren’t a problem. In fact, for many the problems only come from diagnosing and treating them. These are the prostate cancers a surgeon once described as ‘pussycats’. Most men in their 50s will have some cancerous cells in their prostates, and most of those will never need to know about them. They won’t cause symptoms or problems, and won’t grow any further.

The trouble is that some of those men don’t have pussycat cancers. They’ve got tigers; fast moving, aggressive, and often fatal. And those tigers kill one man every hour in the UK.

So arguably, the questions we need to answer to make a huge difference to the lives of men diagnosed with prostate cancer are: how can we tell the tigers from the pussycats? And, how can we take the claws (and teeth) out of the tigers, when we find them? Usually, the answer lies in early detection and early treatment. That is absolutely true for prostate cancer too, but with a hefty caveat.

Early detection and treatment of the pussycat prostate cancers leaves men open to an unnecessary risk of infection from biopsy and of serious treatment side effects, like incontinence and erectile dysfunction. So to make a real difference to these men, we need to find a way to accurately assess their risk of having aggressive prostate cancer, and be able to tell them – with confidence – that they don’t even need a biopsy, let alone radical treatment, if their risk is low.

There’s a huge amount of work going on across the UK, much of which is supported by Prostate Cancer UK and our charity partner The Movember Foundation, into understanding the genetic basis of prostate cancer risk, improving imaging techniques to reduce the need for biopsies, and discovering new biomarkers to identify aggressive disease, to name but a few. As well as developing a new tool to help men and GPs identify a man’s personal risk of having aggressive prostate cancer. All these avenues of research have the same goal in mind: reduce over-treatment of the pussycat prostate cancers, and under-treatment of the tigers.

But what about the men with advanced prostate cancer who are already caught in the tigers’ jaws? The key there, will be well designed clinical trials of ‘smart’ drugs. To make these drugs, we’ll need to understand more about the ins and outs of each man’s cancer; what his, and his cancer’s, genetic make-up can tell us about which treatments will and won’t work for him, and how long they’ll work for. We also need to know more about how to use the drugs we’ve already got more efficiently. Research can help us there too, and again, that work is ongoing. For instance, only last week, we heard that the world’s largest ever prostate cancer clinical trial had reported a clear survival benefit in treating men with docetaxel chemotherapy, alongside hormone therapy from the point of diagnosis with metastatic prostate cancer, instead of just after hormone therapy fails.

Yet science can only take us so far. We will always reach a point – as we have now with the recent trial results – where research identifies a new ‘gold standard’ to improve the lives of men with prostate cancer. Then the scientists have to pass the baton to those who have the keys to access.

That’s why now, more than ever, it’s important that we all, men; researchers; health professionals; health providers and charities, work together to make sure that new technologies are made available quickly and universally across the UK.

Taming a tiger was never going to be an easy job. But it is possible. We’re ready to be bold, and dynamic in pursuit of this ambitious goal. Are you ready to join us?

 

Owen Sharp

It explains the difference between pussycats and tigers. Keep your pussycat away from the dog !!!!

We can't control the winds - but we can adjust our sails
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User
Posted 25 October 2015 22:04:50(UTC)
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User
Posted 26 October 2015 09:24:34(UTC)

Morning Puffingbilly.
I just did a google search and it was one of the articles that came up.

I have doubled checked just now. If you go to www.adjacentgovernment.co.uk then the health and social section to the left, then put in "prostate cancer research" into their search box, it brings the article up.

Hope that helps. I have never heard of this AG before and don't know anything about them. I only posted the article because it was from Prostate Cancer UK and it's fairly recent.

Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
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User
Posted 24 October 2015 17:29:14(UTC)

Hi steamboat Willie, welcome to the forum site although it's only out of necessity but you will find it is the best site for help and information.

There will be lots of advice from folk on here that are in the same position as you or similar or that just know what can or cannot happen at whatever level of this disease you are at.

My position is : diagnosed PCa feb this year, PSA 63 started hormone therapy straight away(on for 2 years) had TURP procedure in June and have had 28 sessions of RT so far with 9 to go. There have been no big problems with RT so far and as far as side effects go I have to go to the loo a bit more often and a bit urgently (danger of pooing myself) it is a bit loose and there is a slight amount of mucus with it, also am full of wind with the danger of doing damp "bubbles" in my pants. I am a bit tired of the daily routine of RT but that said I think that side effects are minimal.

I had a blood test before I started the RT and my PSA was down to 0.5 so the HT is doing its work and shrinking the cancer.

Stay positive and proactive with your treatment options and plans that are offered to you, ask family and friends for advice as well as this forum. At the end of the day you have to make the decision about your treatment but make sure you have asked the relevant questions about it first, take your time before deciding.

Easier said than done when all you want is to start treatment to try to rid yourself of this disease.

I am sure that your age is not a barrier to all the treatment forms available, it will be based on the likelihood of success based on your health at the time.

Hope you choose well, regards Chris/Woody
Life seems different upside down, take another viewpoint

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Posted 24 October 2015 21:43:18(UTC)

Hi Steamboat Willie,

You don't give any of your diagnostic indicators other than your PSA . You have been told you are being monitored but have been offered EBRT. Even this is usually preceded by HT to restrain the cancer and shrink it. It may be that you were not suited for brachytherapy or even that it was not a treatment done at your hospital. Did you ask about surgery as an option or has this been ruled out perhaps because you have other health problems?

More men of your age will have PCa than don't have it and it generally develops slowly so that more die with it than of it. So at an early stage it is a reasonable approach to monitor it, rather than treat it. That way potential side effects of all treatments can be avoided or delayed until treatment is judged beneficial.

Much of what you read in newspapers is generalized, whereas patients have different kinds of PCa, are at different stages and react differently to treatment so should receive personalized treatment. Men with similar situations opt for different treatments not just because of the treatment itself but for other reasons including potential side effects, convenience, need to travel etc etc.

A good idea is to obtain the 'Toolkit' which can be obtained from the main part of this charity.

Barry
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User
Posted 25 October 2015 08:51:32(UTC)

Hello Steamboat and welcome to the site.

Watchful waiting isn't quite the same as active surveillance so is it definitely WW you are on?

This is taken from this website:
"What's the difference between active surveillance and watchful waiting?

Active surveillance is often confused with watchful waiting – this is another way of monitoring prostate cancer. The aim of both is to avoid having unnecessary treatment. But there are key differences between them.

Active surveillance

If you do need treatment, it will aim to cure the cancer.
It is suitable for some men with cancer that is contained in the prostate (localised cancer).
It usually involves more regular hospital tests, such as prostate biopsies and MRI scans.


Watchful waiting

If you do need treatment, it will aim to control the cancer rather than cure it.
It’s generally suitable for men with other health problems who may be less able to cope with treatments such as surgery or radiotherapy, or whose cancer may never cause problems during their lifetime.
It usually involves fewer tests, and these usually take place at the GP surgery rather than at the hospital.

Are you being monitored by your surgery? ie blood tests etc. or are these being done by the hospital.

As it says in the body of the text WW is more for men with other health problems so one has to assume that you do indeed have these?

At 75 (my husband was 72ish at diagnosis) it may well be that you have what we refer to as the "pussycat" version in which case the hospital may think that possible side effects from treatment will greatly affect the quality of the rest of your (hopefully) long life whereas just "watching" it will allow you to remain as healthy as you currently are without adding strain to you.

I can imagine how frustrating it is though to never see the same consultant twice, although having said that, if their records are up to date and accurate, whichever doctor you see should be able to offer advice and give information on where you stand re HT etc.

When do you next have a consultant's appointment?

 

 

We can't control the winds - but we can adjust our sails
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User
Posted 25 October 2015 14:03:49(UTC)

I would like to thank all those who have responded.
I have learnt more about my situation from you than I have from my last two consultants appointments. I have only mentioned my PSA level as that is the only information I have been given during an appointment, and only the first consultant mentioned anything different after my biopsy.
He said that my Gleason level was 7 and as such was an intermediate level, thus he suggested " watchful waiting".
During my latest visit I was told that if I felt that I was fed up with "it" I could opt for RT.
As "it" does not seem to be much of a problem at the moment, I cannot see any necessity to demand RT. I get up to the loo maybe twice a night but the dog usually triggers that and I take advantage of that to use the loo anyway. My blood test are done at my local surgery and the specimens then sent to Urology in the hospital I then find out my result. These blood tests are usually done 6 days prior to the appointment. Sometimes during the day there is the odd urgent pee-ing problem but so far they are manageable.
My health is good, I am very active, shooting (target), walking and playing with my large and active dog.
Newspaper reports, usually the Mails medical pages on Tuesday, mention people with a Gleason of 7 being given MRI scans to ascertain whether the cancer has spread outside the local area.
I do not know whether that is normal but suffice to say I have not heard it mentioned as an option for me, and no HT either, only RT as described previously.
My next appointment is with my original consultant so I hope to get a broader picture of my situation and options. That appointment is in the middle of November. I have never heard of the 'pussycat version of prostate cancer, if I have that I will definitely have to watch the dog carefully as he has a 'thing' about cats.

User
Posted 25 October 2015 16:01:30(UTC)

This is a quote from AG Adjacent Government on the internet and I only include it because the quote is from the CEO of Prostate Cancer UK so is presumably safe to browse.

The article was dated 26th May 2015 so fairly recent.

 

Owen Sharp, CEO at Prostate Cancer UK sheds light on the important work that’s being done to better diagnose and treat prostate cancer…

Most prostate cancers aren’t a problem. In fact, for many the problems only come from diagnosing and treating them. These are the prostate cancers a surgeon once described as ‘pussycats’. Most men in their 50s will have some cancerous cells in their prostates, and most of those will never need to know about them. They won’t cause symptoms or problems, and won’t grow any further.

The trouble is that some of those men don’t have pussycat cancers. They’ve got tigers; fast moving, aggressive, and often fatal. And those tigers kill one man every hour in the UK.

So arguably, the questions we need to answer to make a huge difference to the lives of men diagnosed with prostate cancer are: how can we tell the tigers from the pussycats? And, how can we take the claws (and teeth) out of the tigers, when we find them? Usually, the answer lies in early detection and early treatment. That is absolutely true for prostate cancer too, but with a hefty caveat.

Early detection and treatment of the pussycat prostate cancers leaves men open to an unnecessary risk of infection from biopsy and of serious treatment side effects, like incontinence and erectile dysfunction. So to make a real difference to these men, we need to find a way to accurately assess their risk of having aggressive prostate cancer, and be able to tell them – with confidence – that they don’t even need a biopsy, let alone radical treatment, if their risk is low.

There’s a huge amount of work going on across the UK, much of which is supported by Prostate Cancer UK and our charity partner The Movember Foundation, into understanding the genetic basis of prostate cancer risk, improving imaging techniques to reduce the need for biopsies, and discovering new biomarkers to identify aggressive disease, to name but a few. As well as developing a new tool to help men and GPs identify a man’s personal risk of having aggressive prostate cancer. All these avenues of research have the same goal in mind: reduce over-treatment of the pussycat prostate cancers, and under-treatment of the tigers.

But what about the men with advanced prostate cancer who are already caught in the tigers’ jaws? The key there, will be well designed clinical trials of ‘smart’ drugs. To make these drugs, we’ll need to understand more about the ins and outs of each man’s cancer; what his, and his cancer’s, genetic make-up can tell us about which treatments will and won’t work for him, and how long they’ll work for. We also need to know more about how to use the drugs we’ve already got more efficiently. Research can help us there too, and again, that work is ongoing. For instance, only last week, we heard that the world’s largest ever prostate cancer clinical trial had reported a clear survival benefit in treating men with docetaxel chemotherapy, alongside hormone therapy from the point of diagnosis with metastatic prostate cancer, instead of just after hormone therapy fails.

Yet science can only take us so far. We will always reach a point – as we have now with the recent trial results – where research identifies a new ‘gold standard’ to improve the lives of men with prostate cancer. Then the scientists have to pass the baton to those who have the keys to access.

That’s why now, more than ever, it’s important that we all, men; researchers; health professionals; health providers and charities, work together to make sure that new technologies are made available quickly and universally across the UK.

Taming a tiger was never going to be an easy job. But it is possible. We’re ready to be bold, and dynamic in pursuit of this ambitious goal. Are you ready to join us?

 

Owen Sharp

It explains the difference between pussycats and tigers. Keep your pussycat away from the dog !!!!

We can't control the winds - but we can adjust our sails
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User
Posted 25 October 2015 16:33:42(UTC)

Thanks Johsan

Very informative.
Hopefully it is a pussycat, and I will try to keep it caged.

User
Posted 25 October 2015 20:20:00(UTC)
Thanks Johsan, that explains very well the difference. I hope lots of forum folk read this post to be better informed, is that information available on PCuk site or can it be sent to all members that are fairly new?

Cheers Chris/Woody

Life seems different upside down, take another viewpoint
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User
Posted 25 October 2015 22:04:50(UTC)
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User
Posted 26 October 2015 09:24:34(UTC)

Morning Puffingbilly.
I just did a google search and it was one of the articles that came up.

I have doubled checked just now. If you go to www.adjacentgovernment.co.uk then the health and social section to the left, then put in "prostate cancer research" into their search box, it brings the article up.

Hope that helps. I have never heard of this AG before and don't know anything about them. I only posted the article because it was from Prostate Cancer UK and it's fairly recent.

Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
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User
Posted 26 October 2015 11:09:54(UTC)

Hi Steamboat Willie,

You have only to ask for your full diagnosis from your hospital or may obtain it through your GP and this is something I would suggest you do. You are no doubt coming to realize that the complexities of diagnosis and treatment are greater than one might think as somebody coming new to this situation. You mention that your Gleason score was 7 but was this a 3+4=7 or a 4+3=7? Gleason score indicates how far from normal the cancer cells have become, with the highest number of cancer cells further from normal put first, with the lesser amount second, so there is a greater number of more mutated cells in a 4+3 than a 3+4, which is a significant factor.

A further and very important assessment is the staging, which denotes how well the cancer is contained in capsule, breaking out of it, or is further advanced. Whilst an indication of this is gained from a biopsy, this may miss an affected part which may be shown up in an MRI scan. This happened to me where my initial cancer staging was upgraded to T3A (locally advanced) after MRI scan. The surgeon told me he was not sure he could surgically remove all the cancer. My Gleason was 3+4=7 incidentally.

I cannot say what you should do but in your shoes I would ask for an MRI scan as like in my case there is a possibility that your cancer may be more advanced than maybe thought from biopsy which is a bit hit or miss. If an MRI scan is refused I would ask my GP to be referred for a 2nd opinion at a different hospital.

I missed my opportunity of best chance of cure and HT + RT didn't do the job, so I needed salvage treatment some years on.

Be aware that men who have PCa don't always have any of the usual symptoms so the lack of these does not necessarily indicate that cancer has not progressed.

Barry
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User
Posted 30 October 2015 16:28:24(UTC)

Hi Folks
Armed with the information I had gleaned from your very helpful replies, I had an appointment with my GP today and was able to ask some pertinent questions. These were questions that possibly I should have had answered earlier if I had been made aware of their importance by the medical team.
Today my GP showed me my case notes and printed off the relevant areas.
These I reproduce below and it answers my queries as well as some of yours.

July 2015.

"This patient was seen today for a review of his prostate cancer. To recap, he is diagnosed with Gleason4+3=7 in Feb 2015 on the RH side and Gleason3+4 on 3/5 cause on the LH side. His presenting PSA was 7.6 and his prostatic volume is 85cc.
He was seen in our clinic previously and it was decided to put him on active surveillance protocol (I was told that I was on watchful waiting). We will recheck PSA in 6 months time. He has had a recheck PSA however 3 months later at his request. This came up at 9.8. It is difficult to tell whether this rise in PSA is secondary to a progression of his prostate cancer, or just a fluctuating PSA. We will check his PSA in 3months time to be sure that his PSA is still rising. He will therefore be a candidate to come off active surveillance but I will discuss his results in due course."

At my visit in mid October PSA was reported to me as being still 9.8. As previously mentioned EBRT was offered as an option but not pushed.
Active surveillance to be continued, when I queried if an MRI was a good idea, it was rejected as not warranted.

Brian

User
Posted 30 October 2015 16:48:52(UTC)

Hi Steamboat
I guess the next PSA ( Jan ?? ) is the crucial one where you can see a clear path forward with your medical team and your treatment plan . There are far more experienced people on here to advise you and i'm sure they will , although the weekend can be a little quiet at times . I think the fact you have been offered EBRT is a good thing if you should want it .
Best wishes
Chris




If life gives you lemons , then make lemonade
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Posted 30 October 2015 20:53:16(UTC)

Hi Steamboat,

You have a large prostate and it may be that is why other forms of RT are not being offered. There is no reference that I can see in the report about staging. It seems to me from what you say that a lot of reliance is being placed on how much your PSA increases - not a very reliable indicator in itself as not all PCa cancers produce a lot of PSA and it can fluctuate anyway. In your position I would obtain a second opinion and seek an MRI scan to get a better idea of how well your cancer is contained. No doubt your consultant has a reason why he thought it was unnecessary to have an MRI scan but medics can sometimes be wrong. (One of two leading UK hospitals consider I have cancer in an iliac pelvic node and recommend I start HT and the other is unconvinced that there is cancer and recommends I don't start HT. Admittedly, the difference of opinion is due to different interpretation of scans but one has got it wrong and I have sought a further opinion elsewhere.)

Of course, nobody wants to have treatment and potential side effects before this is beneficial but best chance of cure for PCa is for treatment before the cancer breaks out of the capsule. My cancer first diagnosed in 2007 was staged at T2A but was upgraded to T3A after MRI scan, ie it was breaking out and therefore locally advanced.

The decision to have the offered EBRT now or continue with AS is for you.

Barry
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Posted 30 October 2015 21:44:05(UTC)

Brian

I'm not alone on here in having a PSA under 10 (see my profile) yet had a Gleason 4 in one or more cores. This is no pussy cat you're dealing with.

I don't disagree with the MRI scan comments just giving an alternative perspective -: if the result of the scan isn't going to alter the treatment plan (EBRT) then the consultant might be taking the view what is the point?

Ray

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Posted 31 October 2015 00:07:25(UTC)

That's a fair point Ray but an MRI scan would be a useful indicator on whether RT should start pretty soon or if there was little risk in continuing with AS for a time.

Barry
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Posted 31 October 2015 00:15:59(UTC)

My next appointment with a urologist is 17th November when I hope to see my original consultant who at least tells it as it is, which is what I want. I am wondering whether I ought to be talking with an oncologist rather than a urologist though that has not yet been suggested.

Prior to that I am attempting to find where I might get a private MRI and second opinion.

It is of course weekend now and we 'Brits' go into hibernation workwise from mid day Friday till Monday about 11.00am after we have bored our colleagues with the events of the weekend. So I will try again Monday. 

Brian

User
Posted 31 October 2015 00:19:26(UTC)

Barry
I notice there is somebody else on the planet who stays up late.
Brian

User
Posted 31 October 2015 00:54:34(UTC)

Barry

Re-Your comment about Medics being wrong is possibly why I am giving more credence to what I am being told here than at my hospital appointments.
My wife died two years ago of cancer of the oesophagus. It was the 4th cancer she had suffered and the one she did not survive.
All her cancers had been mis-diagnosed. Breast cancer as blocked milk ducts, (eventually required a mastectomy). Colon as acid indigestion and tickydivertilitis or something similar, a malignant melanoma on her eye as a sty and the cancer that killed as a very sore throat (just gargle with TSP!).
If I have lost some confidence in the medical profession, it is historical, not hysterical.

Brian

User
Posted 31 October 2015 02:53:46(UTC)

Brian,

Sorry you lost your wife, she was extremely unlucky healthwise. It's so hard on you too and exacerbated by your now having PCa.
Yes often late to bed - provides an opportunity to do things without phone calls, callers, meal breaks and other interruptions but I am a late riser and sometimes have a nap after lunch so still get 7 or sometimes 8 hours sleep. But off to bed now!

Just noticed the timing shown is still summertime!!

Barry
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Posted 03 November 2015 13:58:02(UTC)

I am just trying to find out if my Pc is still localised, but it seems to be an uphill task.
My Consultant says MRI not necessary even though PSA has risen to 9.8 from 7.4 in 6 months.
I made enquiry about paying privately for a MRI scan, but I need a referral letter, from my doctor.
My doctor will not go over the head of the consultant, and so far the consultant thinks it is not necessary!
So that's a dead end.
Next consultant appointment is in two weeks time, so I will try again.

User
Posted 03 November 2015 15:02:22(UTC)
Have you asked the reason for refusal? For instance in consultants view is PSA too low or as said before it will not change treatment plan. Once you know the answer to that it might provide a productive way forward.

Ray
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Posted 03 November 2015 16:55:02(UTC)

Difficult for you Steamboat. I was sorry to read about your wife, it must have been a dreadful time for you both.

Is this the same GP surgery that dealt with your wife's health and referrals? If so I would have expected them to be more sympathetic towards your concerns.

I can understand that your GP wouldn't want to go over the head of the expert by referring you for a private MRI
although a) if it shows nothing your consultant doesn't need to know you had one since it's private and the results would presumably go back to the GP and b) if it shows something then the consultant will have been proved wrong.

Consultants in their rarefied boxes may well know what is best for you but unless that is communicated to you with the whys and wherefores you will worry.
Often it is such a simple explanation they probably think it's obvious. ie "I'm not worried so neither should you be"

Perhaps if you asked to see an oncologist you would get a second opinion that way and would still be under the same hospital.

I know two weeks seems such a long time to wait but at least then you should be able to ask some relevant questions based on what you've gleaned from this site.

I'm sure that others will have suggestions for questions to ask.

I did wonder whether you could demand a second opinion so looked how you go about it and I found the following. It might help.
___________________________________________________________________________________________________

NHS CHOICES - taken from the internet

You can ask your GP or another healthcare professional for a second or further opinion (an opinion about your health condition from a different doctor).
Although you do not have a legal right to a second opinion, a healthcare professional will rarely refuse to refer you for one.
For more information, see your choices in the NHS.
Do you need a second opinion?

Before asking for a second opinion, it’s worth asking your GP or consultant to go over your diagnosis and explain anything you don’t understand.
If you’re unhappy with your diagnosis or would like to consider a different course of treatment, discuss this with them. Your GP or consultant will be happy to explain things and, in many cases, there may be no need for a second opinion.
Can anyone else ask for a second opinion?

Your family or carer can also ask for a second opinion on your behalf, but only with your consent. If someone requests a second opinion on your behalf, they should have all the information about your illness or condition, and check they understand it thoroughly.
Sometimes a GP or consultant may ask a colleague to provide a second opinion. For example, doctors may ask their colleagues about a complicated case.
Second opinion from a different GP

If you would like a second opinion after receiving advice from your GP, you can ask them to refer you to another GP.
Alternatively, you may consider asking to see a different GP at your surgery, if you’re registered at a surgery with more than one GP, or changing to a different GP surgery. For more information, see choosing a GP.
Second opinion from a different consultant

If you would like a second opinion after seeing a consultant (a senior medical doctor who specialises in a particular field of medicine), you need to go back to your GP and ask them to refer you again. If your GP agrees to refer you to a new consultant, the consultant will be told that this is your second opinion. They will also be sent any relevant test results or X-rays previously carried out.
This does not mean that the new consultant will automatically take over your care. If you want to be treated by the new consultant, this will need to be arranged with the doctors and hospital.
How long will I have to wait for a second opinion?

People who ask for a second opinion have already seen a doctor, so they may have to wait. A second opinion with a different consultant will also usually be at a different hospital, which may involve some travelling.
Getting a second opinion may therefore delay any treatment that you need. If you have a serious medical condition, you should take this into account when deciding to ask for a second opinion. Ask your doctor whether a delay in starting treatment could be harmful.
Read the answers to more questions about NHS services and treatments.
Further information:

We can't control the winds - but we can adjust our sails
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Posted 03 November 2015 21:14:17(UTC)

Brian,
Some GP's are more helpful than others. We have had men on this forum refused an initial PSA test by their GP yet alone be referred for a second opinion. But let's hope your GP is more forthcoming, if not alternatives have been suggested. You could ask your GP for the name of somebody he recommends for a second opinion or do what I did and find somebody or a well regarded hospital to be referred to. You don't have to have your treatment at the hospital where your second opinion practices. However, before you go down this route I would question your present consultant more closely - it could result in a change of mind about the MRI scan.

You shouldn't need to pay for an MRI scan. Men should be told what their options are. If one of the options is radiation and that was to be your choice, you would need an MRI scan anyway.

Barry
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Posted 13 December 2015 14:55:20(UTC)

Sorry for the long absence from the site, been on my travels in my motorhome before the weather gets bad.
Last consultants visit was the 17th of last month.
Treatment of any sort was not considered an option my PSA is unchanged at 9.8 and the consultant said because of that "I am not ringing any of his alarm bells".
So back on to the six month blood tests and appointments schedule until further notice, or something happens.
With the idea of enjoying life while you have it I have bought another motorbike!
Thanks for all the input from all the above people, and may I wish you all a Happy Christmas.
Brian

User
Posted 14 December 2015 11:51:02(UTC)

Hi Brian,

I am a little confused. You originally reported that you had been diagnosed with PCa with a PSA of 7.4 and that you had been offered RT but were on Watchful Waiting/ (Active Surveillance). You subsequently posted on 30th Oct that your Gleason was seen as 4+3=7, (the top end of intermediate grade). Your PSA has now risen to 9.8 but you say treatment of any sort was not considered. Was the offer of RT mentioned in your first post conditional on your PSA progressing and rising to a certain level and if so what is this level? Also, there is no mention of staging, perhaps due to lack of MRI. A slowly rising PSA by itself is not always an entirely reliable indicator of progression and I would seek assurance from your consultant that your cancer is not breaching the capsule. An MRI could be helpful for this. It does not follow that similar stats for two men require the same course of action but I mention that when first diagnosed my Gleason was 3+4=7, ie there was less advanced cancer in the graded cores than yours although my PSA was higher at 17. The staging was T2A, which would have been operable. However, following an MRI scan the staging was upgraded to T3A, showing the cancer breaching the Prostate and my surgeon did not want to operate, so I had missed that option.

It would be helpful to forum members if you would show the main stats of your diagnosis under your profile and update with significant follow ups, as this serves as a ready reference rather than having to plow through a thread to extract relevant details.

Trust you had an enjoyable holiday and wish you safe and enjoyable biking.

Barry
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Posted 14 December 2015 12:36:28(UTC)

Barry
I have basically given you all the information that I have been given. My next review is mid March 2016 with a further blood test week prior to that.
I have mentioned and requested (not demanded) an MRI scan but it was deemed not necessary by the consultant this time, and also the one I had seen previously six months before.
I don't know what else I can do if I get stonewalled at this level, after all these people are the experts, aren't they?
My Gleason level of 4+3 =7 was as a result of a biopsy done in January 2015 when my PSA was 7.4. My prostates size I am told is 86 and therefore too large for seeding, so RT is the only course of treatment available I am told. My Consultant ensures me that I am "not ringing his alarm bells" and so the 6 month regime is still viable, he says.
A previous consultant, whilst my regular one was away said " if you get fed up with it we can start RT anytime you like".
I do not know exactly what he meant by "it" because my lifestyle is normal for a 77 year old, I am not in pain, incontinent, or in anyway debilitated by the illness. So why would I decide to undertake a treatment that has so many unwelcome possible side effects?
I have no information on staging it has never been mentioned I did ask during the last consultation if there was any way of knowing if the cancer was still contained, didn't get a response to that, other than " you will possibly, and most likely have to find something else to die from".

User
Posted 14 December 2015 20:04:47(UTC)

Brian,

Nobody on this forum would suggest you have treatment and all that may entail, although many of us believe it is a good idea to find out where one stands and from what you say I wonder if you do fully. I would just say that feeling well and being fit is not necessarily an indication of how advanced PCa is and most men don't wish to miss the best opportunity of successful treatment should this situation arise and maybe pass. If you and your consultant feel AS is working fine for you and this may well be the case, long may it continue to do so.

Consultants may be experts, some more so that others but they sometimes come to different conclusions as I can personally testify. In my present situation Consultants at two of the UK's leading hospitals have read my same scans differently, one suggesting I have cancer in an iliac node and recommending I start HT immediately, the other being unconvinced there is cancer and recommending I don't start HT unless my PSA rises significantly. I obtained an opinion from a 3rd hospital who inclined to the latter view and I am following this.

Barry
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Posted 14 December 2015 21:54:13(UTC)

Manwith, it is rare but this time I think you are missing the point. Apparently, Steamboat wants to continue with AS - he doesn't want RT - the consultant is therefore offering the usual AS regime of 6 monthly PSA and annual scan. Why rock the boat or befuddle him?

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


User
Posted 15 December 2015 01:30:17(UTC)

Lyn

I am well aware that Steamboat said at the outset concerning RT " ......I am not keen to try it" and nowhere in any of my posts in this thread have I suggested he should have this or any other treatment! I have read this thread through 3 times and feel this is abundantly clear.

With respect, I think you are missing the point which I am making which I consider is relevant. Steamboat made no mention anywhere of having had an MRI scan and indeed posted on 3rd Nov that his Consultant said one was not necessary so you are only assuming he will have one annually. He doesn't know his staging. His cancer may be indolent and I hope it is but if it is more advanced than he is apparently aware, or becomes so, treatment which may include RT among other possibilities may be considered appropriate sooner or later and faced with such a possibility he would have to decide which option(s) open to him, if any, he would be prepared to go with.

Really can't understand why you suggest I am rocking the boat or befuddling him where in summary I am only suggesting he finds out how he stands so he can act in a timely way in need if he so chooses. There have been men that have been on AS but have 'missed the opportunity of most successful treatment' and I hope that Steamboat will not be one of them. In his post of 31st October Steamboat posted that he had lost his wife to cancer of which she had had several kinds all of which had been misdiagnosed. So not everything consultants say is right and I repeat it is prudent to keep a close check on how one stands.

Barry
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Posted 21 December 2015 01:25:42(UTC)

.
Whoa folks
I don't want to start a row here of all places.
Just re- state my questions and my situation.
If and it is a big if,
I had not decided to upgrade my UK driving licence as I passed the age of 70 I would not actually know that I have Prostate Cancer.
I do not think that I have the classic symptoms as mentioned by my consultants (various} like frequent urination urgency, feeling my bladder was not fully emptied, and the other symptoms I am sure you know about.
So when one of the consultants says if I am fed up with it at any time I am confused as to what "it" actually is.
This is primarily because I do not appear to have these symptoms why should undertake EBRT treatment which they are offering if I am fed up with "it". When " it" does not seem to have manifested itself?.
I would like one however for peace of mind if the "experts" say that I do have PC.............. and the biopsy says I do have PC.
Then is it unreasonable to request an MRI to ascertain whether it is contained within the gland or has spread ?
It appears from the reactions that I am getting at the urology department that it is.
That contradicts what I am reading in the media and on the net.
It is where I am at the moment, in limbo it seems.

User
Posted 21 December 2015 08:57:57(UTC)

Not unreasonable in my opinion (for what that's worth) Steamboat.

Perhaps present the request as a desire to gain as much info before you commit to the treatment path.

They'll want to save money where they can, that's not unreasonable given the strain in the NHS, and as I see it they are saying we know you have cancer and we know how far it's travelled and you don't need to worry yet.

That's fine as far as it goes but it does still leave you in limbo as you say. Did your results ever go to a Multi discipline team. Thinking about it probably not as they are saying RT is the only option.

If it were my man I would be saying we need an MRI for peace of mind as the not knowing is causing worry which is having an effect on our quality of life.

Consultants aren't always good at reassuring their patients because they know what they are talking about

We can't control the winds - but we can adjust our sails
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Posted 22 December 2015 00:15:09(UTC)

Hi Barry, cross purposes - I will message you. Steamboat has previously said that he had an MRI before so my interpretation was that the uro is saying he doesn't need another one. Perhaps I have misunderstood.

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


User
Posted 22 December 2015 11:05:52(UTC)

I have never said that I have had a previous MRI scan, I had requested one previously but had been denied it!

User
Posted 22 December 2015 14:42:17(UTC)

The Daily Mail 22nd Dec should have been called the "prostate edition". Three separate articles about prostate cancer.
The most interesting was that 10,000 more men will be allowed to have Docetaxel as it will be prescribed in England for the disease, it is already used in Scotland.
I would not hold your breath though once NICE find how much it costs.
NICE always seems to know the cost of everything, but not the value to the patient

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Posted 23 December 2015 13:39:15(UTC)

Oh I am really sorry, I must have misread something. How did they know your prostate gland was 85cc without a scan?

ManwithPC, profuse apologies 😕

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


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Posted 24 December 2015 02:15:45(UTC)

Lyn,

You may well have assumed that there was an MRI as part of diagnosis because of the size of the Prostate having been given which is the usual way of determining. I also wondered how this could be calculated so specifically without an MRI. Apparently, the size and weight can be calculated by x-ray but we don't know whether Brian had one at some stage or if it was arrived at by another means, maybe ultra sound scan given for some reason, although Brian would likely have said so if such was the case.

Brian,

When your consultant offered EBRT if you were fed up with 'it', he/she would have been aware that you were were not experiencing the symptoms and adverse effects often associated with PCa. So it rather looks like the 'it' was the uncertainty of how the PCa would develop and/or how you are coping with the monitoring of WW or AS. However, from what you say, the absence of these effects means you do not wish to have major treatment soon unless it is advisable, which is understandable. An MRI scan could well provide you and your consultant with a better idea of where you are and as you say give you greater peace of mind, perhaps in the knowledge that treatment could be deferred for quite a time. Up to you how hard you press an unhelpful GP to refer you for another opinion. Alternatively, you could write to the consultant asking for a written answer as to why you were being refused an MRI, perhaps first having a word with the hospital PALS people - maybe worth a shot!

Barry
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Posted 24 December 2015 07:17:16(UTC)

My initial visit to a Urologist after a PSA of 15 , involved a DRE followed by an ultrasound scan. He took measurements of cubic capacity using that. He also made me express a quantity of semen when removing the device , as I had agreed to take part in a trial looking for a better marker than PSA
Chris




If life gives you lemons , then make lemonade
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Posted 16 January 2016 23:56:43(UTC)

Just had another blood test and another refusal of an MRI scan .
Blood test result
Told not to worry no change in PSA
Brian
aka Steamboat

User
Posted 17 January 2016 09:30:32(UTC)

Sorry that you still can't get it all sorted Brian, what a nuisance.

If you were, as you previously stated, worried enough to consider paying privately then the situation must to some extent be playing on your mind.
Quite normal in that respect, it would certainly play on mine if my John had such vague comments said to him.

Given the high (9.8) PSA, whether it's changed or not and the Gleason of 4+3 and 3+4 I cannot understand why you are being refused the reassurance an MRI could give you.
At least you would be able to make an informed decision based on the result.

I realise that you do not want to go down the EBRT, or indeed any, treatment path if it isn't absolutely necessary and good for you but for the sake of being a little forceful, either with the GP or hospital, you may never know whether early intervention would have helped you if at some stage in the future this cancer really does come and bite you on the bum !

Could you not ask for a second opinion,preferably at another hospital. I know I posted earlier that it isn't an automatic right for any patient but this seems to be getting into the realms of stupidity.

Good luck anyway


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User
Posted 17 January 2016 21:16:16(UTC)

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 January 2016 22:37:18(UTC)

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 January 2016 13:20:34(UTC)

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.

User
Posted 26 January 2016 16:28:18(UTC)

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 January 2016 17:49:47(UTC)

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.

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


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Posted 26 January 2016 18:39:21(UTC)

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''

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Posted 26 January 2016 22:08:01(UTC)

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.

Barry
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Posted 26 January 2016 23:47:37(UTC)

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 January 2016 03:12:05(UTC)

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
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Posted 27 January 2016 09:55:50(UTC)

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
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