Prostate cancer

[Lilly]

1 hour ago, war baby said:

You seem to be a very sensible woman Lilly.  I take it that you are not part of 'Manx Care'.

No. Who actually is Manx Care?  I've have never been addressed as sensible, thank you 😊 

[ballaughbiker]

I have more than a passing interest in this early detection of prostate ca.

I have one good friend terminally ill with it at the moment (stage 4 on diagnosis) and another who had a robotic radical prostatecetomy a year ago, another who has just started urology surgery training and last but not least, I am of that age.

I note that the Patient Access app says PSA 0 - 5.4 ng/mL is normal but the fella who suffered the 'radical' had PSA at the top end of that range yet (obviously) had significant disease. 

 

[Lilly]

43 minutes ago, woolley said:

I am sorry to read of your husband's experience and of your bereavement, Lilly.

I think that men are generally better at getting health issues checked out than they used to be. Speaking for myself, friends and acquaintances compared to our fathers, this is definitely the case, although I am sure there is a long way to go with education about male body self-awareness.

I'd always understood that the case for screening for, diagnosis of, and treatment of prostate cancer was not as straightforwardly positive as it is for, say, breast or cervical cancer. It was seen, even by cancer charities, as something of a curate's egg. As you say, the PSA test would miss some cancers, but at the same time it would put some men in the awful situation of being told they had cancer when their particular cancer was unlikely to harm them and would be better left alone. The biopsy procedure can be unpleasant in its long term effects, as can the treatment, with side effects such as continence issues and erectile dysfunction.

It is known that mammography leads to unnecessary surgery for a proportion of women, but it has long been thought that the positives outweigh the negatives. This has been much more nuanced with prostate cancer procedures, as so many men die with it rather than from it. Perhaps the advent of MRI screening will tip the balance in favour of screening and save many lives, but there will still be a number of patients who, no doubt, will suffer the heartaches of the dreaded cancer diagnosis of something that ultimately would not have harmed them, and also will go on to suffer damaging treatment.

It's all about whether the new procedure can tell the 'aggressive terrible' from the 'slow developing not so bad' far more often than not, although nothing can be 100% perfect in this regard. Prostate Cancer UK, who were not in favour of PSA test screening seem to think it can. There is a wealth of excellent content on their site. https://prostatecanceruk.org/

More specifically to the thread: https://prostatecanceruk.org/about-us/news-and-views/2023/02/our-new-research-shows-the-uk-may-finally-be-ready-for-prostate-cancer-screening

 

Thank you for your sensitive post. Prostate Cancer UK were a great support especially when I felt we had no where else to go.   

It's important that men understand  prostate cancer, as symptoms can vary and are difficult to explain.  But remember,  a visit to GP is never wasted, its your life, and you are important, and if you are not satisfied go back and arm yourself with questions. 

 

Edited August 22, 2023 by Lilly
Removed extra letter 'a'

[Lilly]

4 minutes ago, ballaughbiker said:

I have more than a passing interest in this early detection of prostate ca.

I have one good friend terminally ill with it at the moment (stage 4 on diagnosis) and another who had a robotic radical prostatecetomy a year ago, another who has just started urology surgery training and last but not least, I am of that age.

I note that the Patient Access app says PSA 0 - 5.4 ng/mL is normal but the fella who suffered the 'radical' had PSA at the top end of that range yet (obviously) had significant disease. 

 

I think early detection is the answer.  I'm sorry your friend is at stage 4 at diagnosis. I'm not medically trained so not qualified to make a valid comment, l'm just someone who care for a terminally man.

Thank you for your very welcome post on this subject.  Lilly 

 

[Anyone]

Prostate cancer affects only men therefore it’s not important in the minds of those who run the NHS. And has anyone tried to get a prostate scan ? Guess what you need a referral . Guess what that referral needs to come from your GP , if he or she will deem to see you. Guess what said GP won’t refer you as the only way you can get said scan is private as the NHS will only scan you for prostate cancer when it’s too late - no symptoms no scan even though prostate cancer tends to be symptom free. Try and do it on a preventive basis and of course NHS GP’s despise private so they will not refer you even if you say you will pay. And without that GP referral you can’t get the scan. 
So you die. 

[Jarndyce]

36 minutes ago, Anyone said:

Prostate cancer affects only men therefore it’s not important in the minds of those who run the NHS.

Everyone’s entitled to their own opinion, of course: but, in my opinion, this is dangerous misinformation.   A shame, as this thread has been informative and useful up to now.

[woolley]

45 minutes ago, Anyone said:

Prostate cancer affects only men therefore it’s not important in the minds of those who run the NHS. And has anyone tried to get a prostate scan ? Guess what you need a referral . Guess what that referral needs to come from your GP , if he or she will deem to see you. Guess what said GP won’t refer you as the only way you can get said scan is private as the NHS will only scan you for prostate cancer when it’s too late - no symptoms no scan even though prostate cancer tends to be symptom free. Try and do it on a preventive basis and of course NHS GP’s despise private so they will not refer you even if you say you will pay. And without that GP referral you can’t get the scan. 
So you die. 

It's more that the PSA test, up until very recently the only option available as the primary test, is at best inconclusive, and at worst downright misleading. See earlier post and info I linked from Prostate Cancer UK. Nothing to do with sex discrimination.

[Kopek]

Tho' not prostrate related, having being fast tracked through Nobles for a thrombotic problem I can't see that there was any gender discrimination, 'you've brought it on yourself', you bloody drinker and smoker, more that they tried to monitor the problem without prejudice. Well done them!

[Lilly]

3 hours ago, Kopek said:

Tho' not prostrate related, having being fast tracked through Nobles for a thrombotic problem I can't see that there was any gender discrimination, 'you've brought it on yourself', you bloody drinker and smoker, more that they tried to monitor the problem without prejudice. Well done them!

It doesn't have to be prostate related. 

I looked up the above condition and gained some knowledge, thank you.

[Banker]

11 hours ago, Anyone said:

Prostate cancer affects only men therefore it’s not important in the minds of those who run the NHS. And has anyone tried to get a prostate scan ? Guess what you need a referral . Guess what that referral needs to come from your GP , if he or she will deem to see you. Guess what said GP won’t refer you as the only way you can get said scan is private as the NHS will only scan you for prostate cancer when it’s too late - no symptoms no scan even though prostate cancer tends to be symptom free. Try and do it on a preventive basis and of course NHS GP’s despise private so they will not refer you even if you say you will pay. And without that GP referral you can’t get the scan. 
So you die. 

I and anyone I know has never had any problems asking for referrals to private sector if required so you must have one of very few GPS who won’t so suggest you move practice. Also I can book appointments with whichever doctor I wish.

[Jarndyce]

12 hours ago, Anyone said:

Prostate cancer affects only men therefore it’s not important in the minds of those who run the NHS. And has anyone tried to get a prostate scan ? Guess what you need a referral . Guess what that referral needs to come from your GP , if he or she will deem to see you. Guess what said GP won’t refer you as the only way you can get said scan is private as the NHS will only scan you for prostate cancer when it’s too late - no symptoms no scan even though prostate cancer tends to be symptom free. Try and do it on a preventive basis and of course NHS GP’s despise private so they will not refer you even if you say you will pay. And without that GP referral you can’t get the scan. 
So you die

Based on experiences with my own GP, I’d have to say that this post reads like dystopian fantasy.   However, if it’s true, then I agree with Banker’s comment above - you need to move practice, soon as you can; and probably put in a complaint about your current GP’s bad attitude.

[Andy Onchan]

1 hour ago, Jarndyce said:

Based on experiences with my own GP, I’d have to say that this post reads like dystopian fantasy.   However, if it’s true, then I agree with Banker’s comment above - you need to move practice, soon as you can; and probably put in a complaint about your current GP’s bad attitude.

This much, I suspect, is partly true simply because there is no meaningful & reliable diagnostic screening process:

Quote

the NHS will only scan you for prostate cancer when it’s too late - no symptoms no scan even though prostate cancer tends to be symptom free.

 

[Jarndyce]

46 minutes ago, Andy Onchan said:

This much, I suspect, is partly true simply because there is no meaningful & reliable diagnostic screening process:

Quote

the NHS will only scan you for prostate cancer when it’s too late - no symptoms no scan even though prostate cancer tends to be symptom free.

Yebbut, a large part of that post (not quoted by you) puts the blame firmly at the door of the GPs - but the GPs don’t have unilateral control over the introduction of a “meaningful & reliable screening process”.   Even the bit you’ve quoted is not necessarily true across the board, as far as I am aware.

But I wonder if this has been the poster’s personal experience?   If so, they need to change GPs, as I suggested.

In fact, that brings us back to Lilly’s original post about the need for a national screening programme, matching breast cancer screening or bowel cancer screening.

[woolley]

33 minutes ago, Jarndyce said:

In fact, that brings us back to Lilly’s original post about the need for a national screening programme, matching breast cancer screening or bowel cancer screening.

I agree provided it can be shown to do substantially more good than harm. Prostate Cancer UK appear to believe it can, so on balance, yes.

There is just the sometimes problematic biopsy procedure, the horror of being told you have cancer, and then the possibly even more traumatic treatment, often with undesirable, life-changing side-effects for something that may have done you no harm whatsoever, that you would have died with decades later when something else comes along and kills you. If the initial MRI scan can now distinguish these cases from the ones where treatment is needed and will save the lives of those with aggressive disease, that's ideal. If it means that more men who shouldn't undergo treatment actually do so, then not so good.

[Jarndyce]

1 hour ago, woolley said:

There is just the sometimes problematic biopsy procedure, the horror of being told you have cancer, and then the possibly even more traumatic treatment, often with undesirable, life-changing side-effects for something that may have done you no harm whatsoever, that you would have died with decades later when something else comes along and kills you

If that was how somebody felt - and they felt strongly enough about it - no one would force them to attend for screening.   Plenty of people don’t return the bowel screening samples - I personally think they are wrong, but it’s their decision.

1 hour ago, woolley said:

If the initial MRI scan can now distinguish these cases from the ones where treatment is needed and will save the lives of those with aggressive disease, that's ideal. If it means that more men who shouldn't undergo treatment actually do so, then not so good.

I’m not a radiologist (if one is reading this, please leap in and correct me if I’m wrong!), but I think it very unlikely that MRI could definitively differentiate between very aggressive and less aggressive cancer cells.   Where an MRI shows that cancer has spread beyond the bounds of the prostate, treatment is needed and that’s that.   Where it shows that the cancer is contained completely within the prostate, the only way (at the moment) to be certain of how aggressive the cells are is by a biopsy.   It might not be pleasant - but you’d know whether to have treatment/surgery right away or whether to leave it well alone and monitor for changes.   I appreciate that the “c-word” is in your head by then…