Biopsies and informed consent - - Page 3Being diagnosed with prostate cancer

User

Posted 20 Oct 2017 at 09:24

I feel there is no right or wrong way to feel about cancer and the effect it has-all feelings are valid and real to whoever's they are,and if health professionals-who are human beings too- forget to look at the individual sat in front of them and prioritise deadlines and target figures instead,there is room for improvement..

User

Posted 20 Oct 2017 at 15:30

A few wives from Yorkshire contributing to this thread then!

I too am Yorkshire born and bred.. gritty West Yorkshire for me!

User

Posted 20 Oct 2017 at 16:31

:-)

I am a Geordie living in Yorkshire - double grit!

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

User

Posted 20 Oct 2017 at 19:04

Its good to know fellow yorkshire lasses on the community, not everyone gets the way we come accross i imagine..i still find it hard to post things using full correct words, we have that many slang words or tend to shorten words, for example--off up t ospital tomora t c th quack..haha we have our own language up ere in ull..one of our best is..off down road..it means going to the shops in our main local areas..jo.x

User

Posted 20 Oct 2017 at 19:25

Well you little yorkie geordie lass lynn, my sister lived in whitley bay for 20oodd years lived on percy main was

married to a geordie lad,rough as arseholes me dad used to say😁

so know all your geordie lingo..my neices have lived here in hull for years now but still talk with a geordie accent.good to know weve got a few broad mindedlasses on here nowt fazes us lot up ere dont you think? I find people who arnt from up our way dont always get the way we come accross or our sense of humour, i get told im a bit blunt but hey ho ive got thick skin a bit like a rino🤔..takes bloody ages posting stuff on here trying to put the right words as apposed to the short slang im used to..and doesnt help that im a newbie to posting on here neverknow wether im doing it in the right place its all a bit of a going on lass.jo.xx

User

Posted 20 Oct 2017 at 22:01

Hi bearsdaughter if you thought that i was implying that you shouldnt seek answers or raise concerns that wasnt my intention, i was just replying to your first post and giving you some insight in to our personal situation and the way we are choosing to deal with it, each and everyone of us has different perspectives of what we choose to deem as acceptable or not, our own way of looking at it is the diagnosis would still be the same regardless of what went before it, do i wish tests scans waiting between results were quicker yes? But it still wouldnt change the outcome of our circumstances? the campaigning for mpmri before biopsys is already underway,i hope it becomes standard practice accross the whole of nhs england along with a prostate national screening test, and when i wrote about patients sourcing own information and choosing which path to take my intention was meant that id read up on mpmri before biopsy so raised it with the specialist nurse to be told it wasnt advised in my oh case, also meant that looking back in hindsight i should have discarded what she told me and had one done privately regardless before first biopsys, that was an informed choice we wrongly made, lead to long wait more biopsys, i could blame myself but still wouldnt change where we are now,and also appreciate and value our nhs,i dont like the way its been slashed privatised by the powers that be theyre the real ones to blame, frontline staff used as scapegoates in the media, we.l be relying on it to try and rid my oh of this awful disease so is in my interest to have trust in the treatment and care he.l be recieving.no offence meant..joxx

User

Posted 22 Oct 2017 at 18:01

Originally Posted by: Online Community Member

Hi Bears daughter,

It sounds like you have had a torrid time. We were advised to have a radical prostectomy at the first consult post diagnosis but were told about the other options including active surveillance..

The side effects of my husbands template mapping biopsy were worst than I had seen discussed here ( many here have had a TRUS biopsy however so we are not comparing like with like often) and definitely worse than we were prepared for ( the surgeon said to expect blood in the semen but we experienced a lot more blood than semen) . My husband did recover fully from the biopsy however.

If you want to read people's profiles here you can click the avatar and seeing if people have the same diagnosis as your other half helps in terms of understanding what you may be facing ( everybody seems to have a different PCa journey however).

Also adding your other halfs dagnosis, psa history and Gleason score etc to your bio can help with responses being useful.

My husband had his PSA tested as part of his BUPA corporate medical. He could have opted out of the test but chose to have the test. 2012 and 2014 were 2.5 but 2016 was 3.56. This was the point he got referred.

Did you go ahead with the surgery as advised?

Really sorry to hear about your experience.

Regards

Clare

What I found quite unusual (and also shocking) was that (unlike with most other cancers),in the absence of any visual imagery,and given the (once I read up about it) openly stated potential for missing significant cell changes altogether,as well as picking up insignificant,or 'indolent' cancers,any 'advice' given as to what next,would surely be to gain more information??as in mp MRI, campaigned for on here,watchful waiting,or AS..instead,and without further insight re potential spread/extent,surgery was the first option we were told.I hear and read how complex the whole process round diagnose can be,with some men underdiagnosed or not followed up-yet the opposite also seems to be happening-which has made me question how much time/effort is put into looking at individuals,rather than rushing people through the process..PSA up?better safe than sorry..have a biopsy!Infection?have some more antibiotics..cancerous tumour?better safe than sorry,have it out,whether small and contained or not-which,at this point,nobody knows..you're now incontinent and impotent?yea,but you're alive,(even though your life quality is nowhere near what it was..)Trouble is,once the choice has been made,there is no going back-and whilst i appreciate that some people would rather be done with it-what about the ones that would,in the absence of any troublesome symptoms, rather wait and see?

User

Posted 22 Oct 2017 at 18:40

The proportion of men with low-risk disease being
potentially “over-treated” is stable at about one in eight
men.
This level of “over-treatment” of low-risk localized
disease still remains an area of concern and further work is
required to evaluate treatment pathways for these men and
whether active surveillance is being offered appropriately
in line with current standards. excerpt form national PC audit

one in eight-possibly?

User

Posted 22 Oct 2017 at 19:53

Google enough and you can find any statistic to support your own position. Would be better not to generalise for the rest of us based just on your own experience and frustration though - you will find just as many people with the opposing view as those that share it.

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

User

Posted 22 Oct 2017 at 19:57

Hi there,

Everyone does seem different in terms of what is most important to them.

For us with a low risk diagnosis the risk of an overtreatment concerned us loads. A friend attending a PCa group reported every member was suffering ED.

For us our sex life is very very important, maybe if we were older we would feel differently.

Also for my husband the risk of incontinence was also a massive deal and ED, incontinence and any impact on working together were a quality of life risk he didn't want to counternance...

So everyone has a different risk appetite and for us the risk of overtreatment with a low risk diagnosis was assessed as high impact and high liklhood .. ( I lecture on risk management so with a high impact, high likelihood risk the basic risk management model is AVOID!

That is of course applying a business model and so not directly relevant but for us it resonated.

So we would have gone Active Surveillance from the Choices we were given. Others with low risk diagnosis feel really differently. Reading the book 'the invasion of the prostate snatchers' also influenced.

So it's horses for courses, no rights and wrongs, just different people and different decisions.

My real hope is in 10 years focal options will be available and decisions won't be as hard as they are now.

Good luck Bears daughter with your own decisions

Clare

User

Posted 22 Oct 2017 at 20:26

again-it was not a generalisation,but a question..the 'generalisation' was within a national audit,amongst other informative bits and pieces-published in the information section on here.. And,as Clare points out,different people's willingness to accept risks depends on how much importance they attach to potential,(or aimed at) outcomes and the potential consequences of their choices..I have read the book you mention Clare..and also found 'living proof' by Michael Gearing-Tosh an interesting one..Ultimately,whatever choices are made are primarily my partner's,and as long as he feels happy with the (informed) choice he makes,I will wholeheartedly support him..

Edited by member 22 Oct 2017 at 22:58 | Reason: Not specified

User

Posted 22 Oct 2017 at 20:43

whilst continuing to look at how others negotiate their way around..and very grateful for their input-all valid..

User

Posted 22 Oct 2017 at 21:40

Originally Posted by: Online Community Member

Hi Lyn,

I have read your post a couple of times but not sure what you mean re the generalise comment... it seems to be in relation to:

https://prostatecanceruk.org/about-us/news-and-views/2016/12/national-prostate-cancer-audit-results-most-men-happy-with-curative-treatment-but-overtreatment-still-a-problem

But that seems unlikely?

Could you clarify?

Thanks

Clare

Edited by member 22 Oct 2017 at 22:28 | Reason: Not specified

User

Posted 23 Oct 2017 at 12:13

I too have read the post again-was not aware that there is a 'rest of us' I was 'generalising for'-was under the impression that info published on here was for all,or any of us.to look at and take into consideration,as it may be of interest?

And surely,everybody can decide for themselves whether it is worth considering or not..As-or am I wrong in this-none of us here are 'experts',or qualified to give medical advice,merely able to share,drawing on personal experience,good,bad or indifferent-what exactly are you implying by 'would be better'?

User

Posted 23 Oct 2017 at 16:49

have messaged you.

User

Posted 23 Oct 2017 at 17:09

[edited by mod]

Edited by moderator 24 Oct 2017 at 10:46 | Reason: Not specified

User

Posted 23 Oct 2017 at 19:04

[edited by mod]

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User

Posted 23 Oct 2017 at 20:50

[edited by mod]

Edited by moderator 24 Oct 2017 at 10:45 | Reason: Not specified

User

Posted 23 Oct 2017 at 23:42

I think this thread has moved away from the essence of the initial post and has lost it's way!

We know from experiences members have posted over the years that the quality and quantity of information provided to patients at various stages varies considerably from one hospital to another, sometimes being well short of adequate. We also know that in some cases it takes too long to obtain appointments and obtain results. There are a number of reasons for this but mainly insufficiently well trained and too few medical staff within the NHS to cope with the number of patients, poor administration (which I have experienced first hand) and slow nationwide roll out of latest equipment are the main ones and lack of funding. So good though NICE guidelines may be, many hospitals cannot comply with them in some respects and still treat the ever increasing number of patients presenting with PCa.and many other diseases. There can be very few people in the UK who are unaware of the struggle the NHS has to cope with demand for all medical attention from GP's to Consultants. In cases where a patient considers he has been particularly badly treated he can take his case up with PALS and further. (We had one member - now sadly deceased -who organized a demonstration at his hospital if I recall correctly).

I don't think an individual will have much success in changing the situation as it is in the NHS. I am sure various bodies representing patients have tried. All UK Governments have sold the NHS short in training, retaining and funding sufficient medical staff, providing state of the art equipment and dealing with issues that have a knock on effect for the NHS. Perhaps this is why according to an article in the Daily Express the number of UK patients seeking treatment abroad has increased threefold.

As detailed under my bio, I had my primary treatment in Germany. They have beds awaiting patients there, not patients waiting for beds, also a much better doctor to patient ratio, more cutting edge equipment and much shorter waiting times. An efficient and much improved service could be provided in the UK too if there was the will and the Government made available funds although it would take time due to having to train medical staff or attract them from abroad. Most people in the UK say they love the NHS and many say they would be prepared to pay an additional ring fenced tax to improve it.

In the 9 or so years I have been a member of this forum I think the number of people who have been unhappy with the support/responses they have received could be counted on one hand, whereas numerous members, past and present, have signified their appreciation for the support and information provided by members, many of whom do so notwithstanding their own ongoing struggle with PCa and how it is severely affecting their lives.

Edited by member 24 Oct 2017 at 12:25 | Reason: Not specified

Barry

User

Posted 24 Oct 2017 at 10:44

Hi, all -

We've had a few report notifications about this thread. I can't make a completely clear judgement as to what's going on here, as we can't see the content of your private messages.

There's been a bit too much dancing around what people might be saying and might be implying that's gradually turned vicious - and that's rather a shame, as much of the content here is extremely helpful.

Disagree with each other by all means, but please keep it respectful, open and constructive. More than that, please keep it impersonal.

Thanks,

James

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