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Biopsies and informed consent - experiences,information and support,after effects,variation,patient information leaflets

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User
Posted 08 Oct 2017 at 20:22

hello-


following on from the above,I am interested in people's experience around being diagnosed.There seems to be a fair bit of variation between health boards as far as the following goes,and any input would be appreciated:


1) How many people feel they were given sufficient information prior to initial PSA test-such as purpose/benefits/risks/uncertainties/alternatives/likelihood of being referred for further testing?


2)How well informed were people prior to attending biopsy appointment-both verbally and with written information,such as patient information leaflets?including intended benefits,all risks, possibility of false negatives ,uncertainties as to accuracy of determining agressiveness of cancer found,if found,alternatives such as MPMRI first,or further PSA testing if wanted?


3)How much time was allowed for asking and answering questions/addressing concerns with consultant.gp/nurse?


4)Were people offered the opportunity to consider discussing procedure with relatives/partner/gp if desired,before coming to informed decision,or offered biopsy right there and then?


5)how long before procedure was antibiotic prophylaxis,such as ciprofloxacin/gentamicin or other,orally or intravenously, given?


6)urine test performed prior to biopsy in order to rule out infection?


7)rectal swab performed to establish potential antibiotic resistance?


8)how well were people supported before,during and after procedure?privacy and dinity respected throughout?any recovery time/written aftercare advice/observation/package insert given with remaining antibiotics/letter to referring gp given/date for results appointment given/told what after effects to expect,and what to look out for in case of infection?contact details for 'team' in case of adverse reaction?


9)pain.discomfort levels during and after biopsy?any adverse effects,such as infection/pain/urinary retention/impotence/swelling and bruising/reaction to antibiotics-whether requiring hospital admission or treatment by gp?


10)results given-with/without prior invite to bring partner/friend/relative for support?


11)given in sympathetic,clear and comprehensive way?


12)(if applicable) time allowed to explain results clearly,answer questions,allow for news to sink in in before proceeding to treatment options?


13)treatment options and potential aims/benfits/risks/alternatives(even if not offered or available through local health board)/uncertainties clearly explained?


14)names and contact numbers for MDT given?


15)name and contact number for keyworker given?


16)signposted to further sources of practical/financial/emotional support-such as macmillan/tenovus/CISS/prostate cancer uk/local pc groups?


17)gp copied in on results/treatment plan?


18)anything experienced as being particularly helpful/not helpful?


A lot of questions-any input/sharing appreciated.this is not,nor intended to be,a survey ,,(having been been told by a friend who works in the quality and safety sector of nhs that uptake on patient feedback surveys can be as low as 3%,for whatever reasons-people not aware of possibility of giving feedback/not inclined to even if aware/?)it would be of interest to hear from anybody who would be prepared to share,and maybe gain some insights/lend mutual support,as,already stated,there seems to be lots of variation across different counties/health boards/individual hospitals,no two people present with same symptoms or have the same outlook/ expectation/experience..


thanks

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 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

User
Posted 10 Oct 2017 at 08:35

Originally Posted by: Online Community Member


we are myself and my partner ................................. it feels cold and not ever so welcoming.



bearsdaughter,


Thank you for answering my question.


The problem with your first post was you asked for an absolute mound of data that would take quite a long time to put together. That data would be textual and thus be difficult to analyse and create numerical results from. The question this raised in my mind was "Is the effort I'm being asked to expend going to be worth the benefit that could be achieved?". I felt not.


Regarding how welcoming or not this place is I recommend you read a few other threads on this forum. I think they will inform you of what we are like here.

User
Posted 11 Oct 2017 at 00:15

Of course the opposite can apply too. The leading focal consultant in the UK says overall MRI scans give a better indication of cancer than a TRUS biopsy which is more likely to miss cancer. Talking of biopsies. I also picked up on the 12 needle biopsy reported as template. 12 cores is typical of a TRUS biopsy. A transperineal template biopsy often involves up to 50 cores being taken. In my case a tumour was seen in the MRI but only showed in 1 out of 50 cores. This more elaborate biopsy is usually done under anesthesia, has more longer lasting after effects though less risk of infection than the less expensive, quicker and more simple TRUS biopsy.

I remember being given literature on the TRUS and the template biopsies I had (also on scans and other procedures). Within the NHS the doctors suffer a work overload which probably accounts in part for why long verbal explanations are sometimes avoided. Certainly, men should be made aware of the pros and cons and advisability of treatment for them as individuals but often information is limited to what the hospital they attend can offer. Other hospitals in the UK may offer more choice which can be further increased if a man is treated abroad as Clare's husband did and I too for initial specialised treatment.

Barry
User
Posted 11 Oct 2017 at 10:27

Originally Posted by: Online Community Member


thanks clare,


Absolutely not,as far as surgery or any other interventions go.Our trust in the 'team' stands at around zero,After the mp MRI he finally got 3 months later,(when ,possibly,the results of physical trauma of having 12 needles shot at relatively small prostate had healed)it seems another MRI in 6 months time,as well as monitoring PSA is what he choses.


 



It seems you have chosen the Active Surveillance option.


I have now been on AS for 5 years with no real problems. For me a key factor is the team looking after me, an excellant urology consultant and 2 brilliant specialist nurses. Personally I think that trust and confidence in the medical team are very important going forward with AS.


Regarding informed consent for biopsy I had decided that the proceedure was being done to rule out PCa, so did not take as much notice of the information provided as I should have.


I was given a single aural dose of antibiotic ( not sure which ) about 2 hours before, and 3 days cipro to follow.


Unfortunately I developed an infection and spent a week in hospital on intravenous antibiotics for septicaemia, then a further 3 weeks on aural antibiotics.


As part of my AS I have had 2 further TRUS biopsies, the antibiotics has chaned to single dose IV gentimycin and then cipro to follow up. Both these have caused no problems.


I have also had annual MRIs which have all been OK, none have even detected the low volume PC  found by the biopsies.


 


Regards


 


ARR


 

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 09 Oct 2017 at 00:12

out of both personal as well as general interest is the short reply!


Firstly.I have been volunteering in cancer support,and also work on people with lymphedema,(the likelihood of developing this often not having been pointed out to them prior to treatment),nor what to look out for-so sometimes they are not even diagnosed,left alone signposted to treatment..I feel strongly that the most important thing for anybody diagnosed with cancer is honest,clear and comprehensive information-on tests,potential treatment,medication,after effects,,..any benefits/risks/alternatives=if wanted-!in order  inform  decisions over future treatment..


secondly,as you questioned,there also has been a diagnose closer to home=which,on top of reading up on the subject as well listening to many cancer patients over the last few years,-including prostate cancer patients-made me/us realise that there seems to be huge variation in the amount of information and support offered to help with decision making,or signposting to further sources of support..patient information leaflets vary,as does time allowed for asking questions,local policies and protocols ditto..and we are curious as to how others negotiate the maze..


If, by asking questions and opening up dialogue with both decision makers and the people at the receiving end of the decision making,(and with valuable input to offer)we can maybe  help improve on people's experience,that would be one good thing to come out of the bombshell..


So I felt it might be good to start at the very beginning!


Does that answer your question? :)

User
Posted 09 Oct 2017 at 23:23
Hi Bearsdaughter,

So sorry that you have had to find yourself here. My husband had no symptoms pre diagnosis and I wished we had understood more pre biopsy as initially we just turned up for appointments without understanding that there were a variety of views re the order of and types of tests, the use of scans, the types of machines and types of biopsies.. and this is all before the treatment or indeed no treatment decisions! .

It was really post biopsy when we realised we were going to need to take control, research and generally be proactive.

We are hugely lucky compared to many as my husband had a low risk diagnosis. G6 (3+3) but with large volume and bilateral.

Have you got a diagnosis for your partner?

Regards

Clare

User
Posted 10 Oct 2017 at 23:04

It isn't that straightforward - if it was then all hospitals would offer MRI before biopsy. Some PCa types don't show up on the scan, sometimes the biopsy misses what is there. The best form of diagnosis is biopsy combined with scan and PSA; it doesn't seem to matter much which order the biopsy and the scan are done as long as both happen.

Personally, I have good reason to be grateful that our hospital (a PCa centre of excellence) does the biopsy first. When he had the scan it came back clear; if we had relied on that he would never have been offered a biopsy (his PSA was 3.1). When they operated, they found that every bit of his prostate was cancerous and it had spread to the bottom of his bladder. The scan simply didn't see it.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Oct 2017 at 15:26

Gleeson 6 (3+3), 1/10 involvement.Subsequent mp mri showed two potential small tumours,contained,and several suspicious small foci.


No more biopsies,promised another mri within 6 months by his former consultant we asked for him to be referred back to ( having been repeatedly told he had no consultant,and the nurse practitioner doing the biopsy-who we were given no contact details for and haven't seen since- was in charge of him ,we then found out weeks later his consultant apparently was someone he had never met before.


 

User
Posted 18 Oct 2017 at 09:54

It fills me with dismay to hear about the poor experiences some people have had with treatment/options. If you are in England, you have lots of choices and rights. We have less in Wales. I realise that it can often be difficult to get access to consultants etc. and you do have to battle. At a time when a battle is the last thing you need, you have to do it. There's a lot of information here and on other sites. As an example of the "battle", I had an eye problem and my optician referred me to a specialist. Waiting time was 38 weeks. Went back to my optician and told him this and he was exasperated. Basically, if what he was concerned about was correct, I could have started to go blind in that time. I harangued my Doctor and the NHS sent me to a private hospital in a matter of days not weeks. End result, regular surveillance of the back of my left eye in particular.

Slightly tangential - but picking up on the "template biopsy" issues raised above, I'd be interested to hear something about side effects and recovery.

August 30th. I had a template biopsy under general, targeted on an area picked up on mpMRI and a sample taken from various zones in my prostate - 34 cores in all. My body didn't take kindly to ciprofloxassassin, it sent me on a dark downward spiral and left me with pins and needles in my feet. Ironically the area that showed up on the MRI came back negative but cancer was still found in 3 cores. Apart from the initial discomfort, more from the pad than anything else, I was more or less "right" after about 3 days in so much as we went out as a family, no overwhelming urges to pee or blood, and we had a pleasant afternoon out as a family.

However, it's now mid-October and I still don't feel quite right downstairs. The main issue for me is I get the urge to pee, but it comes from behind the penis head, not the bladder; I also get a dull ache in the same area from time to time. This started at about 3-4 weeks post biopsy. Consultant gave me some antibiotics which do seem to have helped a bit. If I ignore the ache or desire to pee then I am hitting 3-400 ml when I do go with good flow. I have my pre-treatment assessment in 2 and a half weeks and want to be "right" for that. I'd like to hear what others have experienced.

User
Posted 19 Oct 2017 at 17:38

The vast majority don't get an infection from the biopsy and I guess many just don't care very much about the things that you seem to be very angry about. For some men the view is probably that there are risks in any procedure and that the risk of infection is outweighed by the risk of undiagnosed or incurable cancer. John doesn't remember having any antibiotic with his biopsy but that was more than 7 years ago and I don't think he was particularly curious about it - the doctor said he needed one so he went to hospital in the morning, had the biopsy and then carried on his way to work. There was no detailed discussion or debate, just a quick mention that there might be some blood in his semen and that was it.

I do remember being very angry in the early days that we were dealing with cancer too young and that our family had been hit by yet another diagnosis when we were already reeling from multiple blows. But we were angry at the cancer not the medics or the process. I am not sure that you will ever find the answers you are looking for - as you say, there are no conclusive studies, a lack of resources to fund new research and each CCG can determine its own protocols. It would need a General Election and a brand new kind of party politics to change that.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 19 Oct 2017 at 19:55

Hi there,

I have bounced an old thread of mine from my initial research on the blue light laser treatment.

If you scroll to 14th January 2017 which is 3 weeks post diagnosis I had a lot of things that I wished had been made clearer to us.

So yes here are people who want to know everything...

Regards

Clare

User
Posted 19 Oct 2017 at 23:49
Hi just replying to a few of your questions my oh had routine bloods at gp raised psa22 no symptoms,2 weekbfast track to urology 13 days later had appoontent, nurse specialist carried out dre it was fine told oh she would book him for random trus biopsys explained breifly side effects etc gave us leaflet with info, i asked her if possible if he was able to have mpmri before biopsys which id already read up on, said we would pay private if need be but for different reasons ours at the time my oh doesnt get paid for odd days from work and equated 6 plus apointments for procedures results etc would probably work out same as private mpmri also less stress timewasting, also our hospital do have mpmri scanner, was told no as his psa is above 15 guidelines are biopsys first..went 8days later for biopsys oral antibiotics before then iv antibiotics before trus biosys also gave him oral ones to take homefor so many days..results from biopsys 3cores gleason6..consultant said psa doesnt tally with low grade so booked in for mpmri repeat psa but had to wait 6weeks due to biopsys..shocked but could be worse or so we thought..6weeks later mpmri repeat psa waited2 weeks for results new area for concern psa up from 22 to 27..booked in for targeted biopsys 10days later..then waited approx 4weeks for results..gleason9 t3b seminal vesicle invasion..been on zoladex5weeks now got to be on it3months before high dose brachythrapy and pelvic radio to lymph node area..my point is we could be bitter at the time its taken to get this disgnosis its been 6months now plus lots of invasive biosys plus stress of waiting results etc,it might not have gone into seminalvesicles,if mpmri first but it is what it is cant change it now and hes still here with hope of curative outcome..were focusing on trying to be positive of a good outcome not wasting negative energy on complaining or blaming anyone..if that was the case i could easily blame myself for not taking it upon myself to sort out private mri regsrdless..as i see it we all have access to information on everything we want if we wish to source it, we also have certain choices as patients of the nhs we can make our own informed decisions on routes to procedures treatments which are already stretched within our nhs, which i by the way am very greatful for..long post im sorry but just wanted to put a perspective on things..lifes sometimes too short for blame and liability..well for me anyway it makes me miserable and im of the mindset none of us are perfect always room for improvement even our fantastic nhs..jo.x
User
Posted 20 Oct 2017 at 00:18
Hi lynn sorry to but in, how youve just explained how you was angry at the cancer not the medics and too young to be hit by it mirrors exactly the way we feel, i love your take on the way you express your views and posts, also read your post about e.d, my god i was in tears, probably because were going down that road at the minute it just makes me sad for him and for me and what weve lost, your honest and open from the heart and say it how it is..and its probably a little bit to do with been a bit yorkshire that i get you.. Id say your a bit of an inspiration on here lass.😊.were up your way next week at jimmys to see about high dose brachy they dont do it up in hull..my daughter also lived there for3 years went to your uni..🌍.jo.xx
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 21:40

Originally Posted by: Online Community Member


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.



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

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.


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'?

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User
Posted 08 Oct 2017 at 23:37

Hi bearsdaughter,
why are you asking? Is this a piece of research in which case have you had it passed by your ethics committee? Or are you unhappy with the way your partner was treated and are considering making a complaint?

I would happily answer these questions on behalf of my three men if it is for research but not if it could be taken out of context for a complaint.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Oct 2017 at 00:12

out of both personal as well as general interest is the short reply!


Firstly.I have been volunteering in cancer support,and also work on people with lymphedema,(the likelihood of developing this often not having been pointed out to them prior to treatment),nor what to look out for-so sometimes they are not even diagnosed,left alone signposted to treatment..I feel strongly that the most important thing for anybody diagnosed with cancer is honest,clear and comprehensive information-on tests,potential treatment,medication,after effects,,..any benefits/risks/alternatives=if wanted-!in order  inform  decisions over future treatment..


secondly,as you questioned,there also has been a diagnose closer to home=which,on top of reading up on the subject as well listening to many cancer patients over the last few years,-including prostate cancer patients-made me/us realise that there seems to be huge variation in the amount of information and support offered to help with decision making,or signposting to further sources of support..patient information leaflets vary,as does time allowed for asking questions,local policies and protocols ditto..and we are curious as to how others negotiate the maze..


If, by asking questions and opening up dialogue with both decision makers and the people at the receiving end of the decision making,(and with valuable input to offer)we can maybe  help improve on people's experience,that would be one good thing to come out of the bombshell..


So I felt it might be good to start at the very beginning!


Does that answer your question? :)

User
Posted 09 Oct 2017 at 00:16

not familiar with 'ethics committee'? could you explain please?

User
Posted 09 Oct 2017 at 12:37

Originally Posted by: Online Community Member


out of both personal as well as general interest is the short reply!


Firstly.I have been volunteering in cancer support,and also work on people with lymphedema,(the likelihood of developing this often not having been pointed out to them prior to treatment),nor what to look out for-so sometimes they are not even diagnosed,left alone signposted to treatment..I feel strongly that the most important thing for anybody diagnosed with cancer is honest,clear and comprehensive information-on tests,potential treatment,medication,after effects,,..any benefits/risks/alternatives=if wanted-!in order  inform  decisions over future treatment..


secondly,as you questioned,there also has been a diagnose closer to home=which,on top of reading up on the subject as well listening to many cancer patients over the last few years,-including prostate cancer patients-made me/us realise that there seems to be huge variation in the amount of information and support offered to help with decision making,or signposting to further sources of support..patient information leaflets vary,as does time allowed for asking questions,local policies and protocols ditto..and we are curious as to how others negotiate the maze..


If, by asking questions and opening up dialogue with both decision makers and the people at the receiving end of the decision making,(and with valuable input to offer)we can maybe  help improve on people's experience,that would be one good thing to come out of the bombshell..


So I felt it might be good to start at the very beginning!


Does that answer your question? :)



Please can you tell me who 'we' are?

User
Posted 09 Oct 2017 at 17:56

Hi bearsdaughter,
Anyone in the NHS or related services undetaking any kind of research has to get approval from an ethics committe, as do students researching as part of a degree etc. It is about clarifying what will happen to the data, how data will be stored and verified, the impact providing data may have on participants, any conscious or unconscious bias, etc.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Oct 2017 at 18:02

Hi bearsdaughter. If you are a lymphodoema practitioner, I hope you are a specialist qualified nurse. In this case you should know about ethics. Take care.

AC

User
Posted 09 Oct 2017 at 22:37

we are myself and my partner,who has been fairly recently diagnosed.If this was not clear in my first post,apologies.There appear to be a few assumptions made.I am first and foremost a human being,and try,on the whole,to make life more pleasant for others..
If asking questions about what has,for us,and from what i have seen and heard,for others also, been a scary,confusing and overwhelming situation is 'research'-is everybody on here not doing their own,in their own way?Is what i share with others and what they chose to share on here-or not-classed as 'data'?
If so,I'd rather not be here,it feels cold and not ever so welcoming.


User
Posted 09 Oct 2017 at 23:23
Hi Bearsdaughter,

So sorry that you have had to find yourself here. My husband had no symptoms pre diagnosis and I wished we had understood more pre biopsy as initially we just turned up for appointments without understanding that there were a variety of views re the order of and types of tests, the use of scans, the types of machines and types of biopsies.. and this is all before the treatment or indeed no treatment decisions! .

It was really post biopsy when we realised we were going to need to take control, research and generally be proactive.

We are hugely lucky compared to many as my husband had a low risk diagnosis. G6 (3+3) but with large volume and bilateral.

Have you got a diagnosis for your partner?

Regards

Clare

User
Posted 10 Oct 2017 at 08:35

Originally Posted by: Online Community Member


we are myself and my partner ................................. it feels cold and not ever so welcoming.



bearsdaughter,


Thank you for answering my question.


The problem with your first post was you asked for an absolute mound of data that would take quite a long time to put together. That data would be textual and thus be difficult to analyse and create numerical results from. The question this raised in my mind was "Is the effort I'm being asked to expend going to be worth the benefit that could be achieved?". I felt not.


Regarding how welcoming or not this place is I recommend you read a few other threads on this forum. I think they will inform you of what we are like here.

User
Posted 10 Oct 2017 at 11:12

I realise that storming in with mounds of questions was probably a bit much-but surely,and from reading clare's post above,I am not on my own with that?
As for 'data'-I do not feel people's personal experiences to be 'data',or-if offered (since nobody is obliged to reply if they are not comfortable with it,or feel they want to comment),there to be analysed or counted,other than in a 'so I am not completely on my own with this' way..sometimes,when I feel completely overwhelmed,it make a list of all the questions that go round and round in my head,get them on paper and look at them from outside-if that makes any sense..This may look like i am some sort of statistician-which i am not,it is a coping strategy that occasionally helps me when i feel lost and overwhelmed.I am very grateful for clare's reply and acknowledgment of the confusion that others also experience..a little kindness goes a long way..

User
Posted 10 Oct 2017 at 11:41

thank you so much clare.My partner had a traumatising experience around his diagnose,the aftermath of which is still haunting us..He was completely unaware of what was likely to happen when he went for what he believed to be a routine review with his usual consultant.as was I.I don't want to go into too much detail,but from what we have found out since regarding his treatment seems to be that corners were cut to the point of there not being any left,,and yes-in a way we feel lucky,compared to others,as what seems to be the case is that low grade (3*3) contained cancer was found,and in contrast to what we were told at the follow up appointment,'giving' radical surgery as first option within minutes of results,there are plenty other options.


If what we experienced can help improve the way others are treated in the future,it would help us make some sense of it..

User
Posted 10 Oct 2017 at 11:52

I posted a reply to a question asked.I try to not make assumptions over anybody else's thoughts,feelings,status or profession.I guess that falls under ethics?

User
Posted 10 Oct 2017 at 13:24
Quote:

If, by asking questions and opening up dialogue with both decision makers and the people at the receiving end of the decision making,(and with valuable input to offer)we can maybe help improve on people's experience,that would be one good thing to come out of the bombshell..



I think the language you used here suggested that you were undertaking a professional piece of research that may be used to improve patient outcomes - or that you were planning to sue someone.

If you are only asking in order to benchmark your own experiences then the replies will be as different as the people replying.

1. My dad was diagnosed after a trip to A&E with urinary retention. No he wasn't advised of the pros and cons of testing and diagnosis but was in so much pain he would have agreed to anything.

2. Dad-in-law diagnosed after a well man check up where someone ticked the PSA box without asking him. As he was 79 there was a full discussion about whether or not to have biopsy, risks, the temptation to let sleeping dogs lie etc etc.

3. Husband requested PSA test on the back of the other two diagnoses. Yes full consultation with GP and then with the urologist about whether to have biopsy. At the time, scans always came after biopsy not before so nothing to debate (thankfully since his scan gave completely wrong results). At the hospital he was given the full PCUK toolkit
and advised of this online forum where we might get support.

The thing all three had in common was the nurse specialist. We were given her number but she has never been in touch or been involved in any way and has never returned a phone call. I guess she has a huge caseload.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 Oct 2017 at 14:56

thanks ,that means so much.


So few words,with such implications..


We each use language in different ways,and often modify and change it according to circumstances and emotional state..for myself,I tend to try and gain some 'time out' from the emotional impact of what has happened and is happening..asking factual questions engages a different part of my brain..


Is that research?Of sorts...Am i planning to sue anybody?Even if it appeared to be an option worth exploring(which I doubt) that might eventually lead to improved information provision and care for people finding themselves catapulted onto the alien planet of cancer world,I feel it would be counterproductive-accusing and complaining tends to invite defensiveness and slammed doors rather than dialogue.


 

User
Posted 10 Oct 2017 at 16:44
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

User
Posted 10 Oct 2017 at 17:32

thanks clare,


Absolutely not,as far as surgery or any other interventions go.Our trust in the 'team' stands at around zero,After the mp MRI he finally got 3 months later,(when ,possibly,the results of physical trauma of having 12 needles shot at relatively small prostate had healed)it seems another MRI in 6 months time,as well as monitoring PSA is what he choses.


 

User
Posted 10 Oct 2017 at 19:16

Hi bearsdaughter,

I see, it sounds like our diagnostic toutecwas different, in that via the BUPA route we had a 1.5 tesla MoMRI scan first but the results were given en route to the operating theatre for his template biopsy. I was on the ward upstairs so didn't hear the news that a lesion was present on the scan until the biopsy was over. The surgeon said to my husband just before he went under that he had something to aim at.

It did surprise us that it was communicated that way rather than prior to the biopsy.

He was prescribed antibiotics and was terribly bruised. He too has a small prostate and 46 cores were taken.

You mention 12 needles so was it a TRUS biopsy? This we have no experience of.

The outcomes of the ProtecT report may be worth reading for reassurance that Active Surveillance is a valid choice following a low risk diagnosis. The main site here has the link so it may help if you have a read.

The ADDaspirin and vitamin D3 trial is also of interest and many including my husband are following one of its arms voluntarily or on recommendation by their urologist. It's worth a read.

With best wishes

Clare

User
Posted 10 Oct 2017 at 19:54

thanks clare-yes,not on BUPA or any other health insurance,And no offer of mri first,in fact,the question of possibility thereof answered with a short 'forget it'.Guesswork,or battleships,,


Despite the apparent complexity of different people/scenarios,getting a visual image of what there might be before going in with invasive tests would seem to make sense?Also,providing protection against infection-which did not seem to work,whether because antibiotics not given soon enough before?wrong antibiotics?


Which made me wonder how many others end up with infections,despite 'prophylaxis',what this means for repeat biopsies (not that that is going to happen any time soon..),and why it seems to vary so much-with some hospitals starting antibiotics the day before or even longer,using intravenous as opposed to oral,whereas others minutes before?


Thank you for the mention of trials.will have a read..

User
Posted 10 Oct 2017 at 23:04

It isn't that straightforward - if it was then all hospitals would offer MRI before biopsy. Some PCa types don't show up on the scan, sometimes the biopsy misses what is there. The best form of diagnosis is biopsy combined with scan and PSA; it doesn't seem to matter much which order the biopsy and the scan are done as long as both happen.

Personally, I have good reason to be grateful that our hospital (a PCa centre of excellence) does the biopsy first. When he had the scan it came back clear; if we had relied on that he would never have been offered a biopsy (his PSA was 3.1). When they operated, they found that every bit of his prostate was cancerous and it had spread to the bottom of his bladder. The scan simply didn't see it.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Oct 2017 at 00:15

Of course the opposite can apply too. The leading focal consultant in the UK says overall MRI scans give a better indication of cancer than a TRUS biopsy which is more likely to miss cancer. Talking of biopsies. I also picked up on the 12 needle biopsy reported as template. 12 cores is typical of a TRUS biopsy. A transperineal template biopsy often involves up to 50 cores being taken. In my case a tumour was seen in the MRI but only showed in 1 out of 50 cores. This more elaborate biopsy is usually done under anesthesia, has more longer lasting after effects though less risk of infection than the less expensive, quicker and more simple TRUS biopsy.

I remember being given literature on the TRUS and the template biopsies I had (also on scans and other procedures). Within the NHS the doctors suffer a work overload which probably accounts in part for why long verbal explanations are sometimes avoided. Certainly, men should be made aware of the pros and cons and advisability of treatment for them as individuals but often information is limited to what the hospital they attend can offer. Other hospitals in the UK may offer more choice which can be further increased if a man is treated abroad as Clare's husband did and I too for initial specialised treatment.

Barry
User
Posted 11 Oct 2017 at 09:42


On the subject of scans it may be worth re highlighting the fantastic work done by Prostate Cancer UK using Freedom of Information to find out where the MpMRI scanners actually are in the UK and that shows how little they are being used for PCa diagnosis(8th January 2917)


https://public.tableau.com/profile/ali.cooper#!/vizhome/mpMRIFOIpublicdashboard-ProstateCancerUK_0/FullresultsStory

A US consultant who blogs a lot said this month:

'Please note that a negative 3T mpMRI performed well and read by a skilled radiologist has a less than almost perfect negative predictive value. Depending on the circumstances, the negative predictive value will range from about 80 - 95%. A negative TRUS (blind) biopsy, will cut the remainder in about half.

I have seen high quality MRIs not pick up intermediate and high risk prostate cancers (it does happen). So if a patient's MRI is negative but their PSA trend is suspicious, I generally recommend a TRUS biopsy especially if they have not had one before. Of course, this has to be tailored to the patient's specific situation and other factors need to be considered as well.

One time when I was discussing this with a group of urologists, I stated, "The only test that is 100% sensitive is a radical prostatectomy." A few of them chuckled and one responded, "Even that is not 100%--the pathologist can still miss it!"

A high quality 3T mpMRI is a powerful, but not perfect, test. There is still a place for non-targeted prostate biopsies in my opinion, albeit a much smaller place than 10 years ago'.

It interested me, also as PCUK highlighted in January there is a problem in the UK accessing a 'high quality 3T mpMRI'

Via BUPA our first scan was a 1.5T mpMRI locally, however our 2nd opinion BUPA consultant uses a Gadolinium Enhanced 3T mpMRI machine.

So we are not necessarily comparing apples with apples when we talk about scans.

User
Posted 11 Oct 2017 at 10:14

yes,no two are the same..and plenty margin for not seeing/finding..or finding what might be slow growing..

User
Posted 11 Oct 2017 at 10:27

Originally Posted by: Online Community Member


thanks clare,


Absolutely not,as far as surgery or any other interventions go.Our trust in the 'team' stands at around zero,After the mp MRI he finally got 3 months later,(when ,possibly,the results of physical trauma of having 12 needles shot at relatively small prostate had healed)it seems another MRI in 6 months time,as well as monitoring PSA is what he choses.


 



It seems you have chosen the Active Surveillance option.


I have now been on AS for 5 years with no real problems. For me a key factor is the team looking after me, an excellant urology consultant and 2 brilliant specialist nurses. Personally I think that trust and confidence in the medical team are very important going forward with AS.


Regarding informed consent for biopsy I had decided that the proceedure was being done to rule out PCa, so did not take as much notice of the information provided as I should have.


I was given a single aural dose of antibiotic ( not sure which ) about 2 hours before, and 3 days cipro to follow.


Unfortunately I developed an infection and spent a week in hospital on intravenous antibiotics for septicaemia, then a further 3 weeks on aural antibiotics.


As part of my AS I have had 2 further TRUS biopsies, the antibiotics has chaned to single dose IV gentimycin and then cipro to follow up. Both these have caused no problems.


I have also had annual MRIs which have all been OK, none have even detected the low volume PC  found by the biopsies.


 


Regards


 


ARR


 

User
Posted 14 Oct 2017 at 14:06

No,we did not chose active surveillance..long story..


My partner was 'entered into' or 'put on' AS without his agreement or informed consent,and after clearly stating he did not want to take that option.


 

User
Posted 15 Oct 2017 at 12:22
Hi Bears daughter,

Do you mind me asking what diagnosis your partner has in terms of Gleason score and percentages?

Kind Regards

Clare
User
Posted 16 Oct 2017 at 15:26

Gleeson 6 (3+3), 1/10 involvement.Subsequent mp mri showed two potential small tumours,contained,and several suspicious small foci.


No more biopsies,promised another mri within 6 months by his former consultant we asked for him to be referred back to ( having been repeatedly told he had no consultant,and the nurse practitioner doing the biopsy-who we were given no contact details for and haven't seen since- was in charge of him ,we then found out weeks later his consultant apparently was someone he had never met before.


 

User
Posted 18 Oct 2017 at 09:01

from what i read and hear,this is not at all uncommon.What was,to my mind,uncommon,was the 'offer',or 'option',listed within seconds of results,of radical prostatectomy-before any mention of watchful waiting,AS or anything else..in the absence of any visual imagery,at this point,as well as given what and how we had just been told,this seemed madness!


I also would like to mention at this point that my partner suffers from PTSD related anxiety and memory problems.

Edited by member 18 Oct 2017 at 09:04  | Reason: Not specified

User
Posted 18 Oct 2017 at 09:54

It fills me with dismay to hear about the poor experiences some people have had with treatment/options. If you are in England, you have lots of choices and rights. We have less in Wales. I realise that it can often be difficult to get access to consultants etc. and you do have to battle. At a time when a battle is the last thing you need, you have to do it. There's a lot of information here and on other sites. As an example of the "battle", I had an eye problem and my optician referred me to a specialist. Waiting time was 38 weeks. Went back to my optician and told him this and he was exasperated. Basically, if what he was concerned about was correct, I could have started to go blind in that time. I harangued my Doctor and the NHS sent me to a private hospital in a matter of days not weeks. End result, regular surveillance of the back of my left eye in particular.

Slightly tangential - but picking up on the "template biopsy" issues raised above, I'd be interested to hear something about side effects and recovery.

August 30th. I had a template biopsy under general, targeted on an area picked up on mpMRI and a sample taken from various zones in my prostate - 34 cores in all. My body didn't take kindly to ciprofloxassassin, it sent me on a dark downward spiral and left me with pins and needles in my feet. Ironically the area that showed up on the MRI came back negative but cancer was still found in 3 cores. Apart from the initial discomfort, more from the pad than anything else, I was more or less "right" after about 3 days in so much as we went out as a family, no overwhelming urges to pee or blood, and we had a pleasant afternoon out as a family.

However, it's now mid-October and I still don't feel quite right downstairs. The main issue for me is I get the urge to pee, but it comes from behind the penis head, not the bladder; I also get a dull ache in the same area from time to time. This started at about 3-4 weeks post biopsy. Consultant gave me some antibiotics which do seem to have helped a bit. If I ignore the ache or desire to pee then I am hitting 3-400 ml when I do go with good flow. I have my pre-treatment assessment in 2 and a half weeks and want to be "right" for that. I'd like to hear what others have experienced.

User
Posted 18 Oct 2017 at 10:07

Hi


You have probably seen this, but if not it may be useful.


nice guidance cg175


 


And this is a flowchart which is basically the same as the above presented in a different way.


nice pathways/prostate-cancer


 


ARR


 

User
Posted 19 Oct 2017 at 14:16

yes,have seen and read NICE guidance repeatedly..adhesion to both 'information and decision support',and 'diagnosis' guidelines questionable to nonexistent..nor adhesion to PCRMP's guidelines to undertaking TRUS biopsy,as cited by NICE guidelines as 'recommended'I am no microbiologist,but the question arises:..Does administration of oral ciprofloxacine minutes before biopsy actually  provide 'prophylaxis?Given that cipro oral achieves maximum serum concentration around 60 to 90 mins post ingestion,it would appear not..There appear to be no conclusive studies into optimal timescale for 'prophylaxis' administration pre procedure-yet in prevention of surgical site infections (needle biopsy may not be classed as 'surgery-yet it breaks through integrity of skin,introducing bacteria from rectum (contaminated) into previously intact and contained prostate capsule (clean),cipro 750mg is recommended 60 mins pre procedure??


If this is 'best practice,why the variations between different hospital protocols,ranging from single dose an hour before to multiple dose,started minutes before,and followed by several more-with quite a few people developing infections anyway?

User
Posted 19 Oct 2017 at 17:38

The vast majority don't get an infection from the biopsy and I guess many just don't care very much about the things that you seem to be very angry about. For some men the view is probably that there are risks in any procedure and that the risk of infection is outweighed by the risk of undiagnosed or incurable cancer. John doesn't remember having any antibiotic with his biopsy but that was more than 7 years ago and I don't think he was particularly curious about it - the doctor said he needed one so he went to hospital in the morning, had the biopsy and then carried on his way to work. There was no detailed discussion or debate, just a quick mention that there might be some blood in his semen and that was it.

I do remember being very angry in the early days that we were dealing with cancer too young and that our family had been hit by yet another diagnosis when we were already reeling from multiple blows. But we were angry at the cancer not the medics or the process. I am not sure that you will ever find the answers you are looking for - as you say, there are no conclusive studies, a lack of resources to fund new research and each CCG can determine its own protocols. It would need a General Election and a brand new kind of party politics to change that.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 19 Oct 2017 at 18:25

In the absence of large comprehensive surveys,with an ,ideally,but hardly ever achieved take up of more than 80%,the 'vast majority' might,or might not develop infections,impossible to prove or disprove.


I am not here to prove or disprove,merely to ask questions(which nobody is obliged to answer-it's a bonus if they do),listen and maybe get a bit more insight and possibly even some support,


As yet,you know very little about my individual circumstances,or the reasons for me feeling angry.


Cancer happens,to many people,and for multiple reasons.Neither my partner nor myself feel angry about it-it was actually the least of the upset..I would not want to invalidate or belittle anybody's experiences or feelings-they are all valid,-even though they might completely differ from ours..others might,or might not care-either way,they might also not chose to post on here..I would not presume on this..I also feel that 'guidelines'.policies and protocols (like the NICE ones)are there for a reason,and are being constantly updated.I


t strikes me as curious that they can simply be overridden,be it for political,financial,logistical,organisational or other reasons..What seems to be very clear,and a must,is the law on informed consent..And that is something I feel passionate about-how can anyone make a choice over any form of investigative or interventive treatment if they are not fully informed about what it entails,who will be responsible,why it might be deemed necessary,what might happen after,or what the alternatives might be?

User
Posted 19 Oct 2017 at 18:51

because as well as the ones who do not want to know/don't really care,there are the ones that DO want to know everything,including what they might realise they did not remember to ask at the only  rushed appointment they got..

User
Posted 19 Oct 2017 at 19:55

Hi there,

I have bounced an old thread of mine from my initial research on the blue light laser treatment.

If you scroll to 14th January 2017 which is 3 weeks post diagnosis I had a lot of things that I wished had been made clearer to us.

So yes here are people who want to know everything...

Regards

Clare

User
Posted 19 Oct 2017 at 20:53

thanks clare :)


 

User
Posted 19 Oct 2017 at 21:10

and care :)

User
Posted 19 Oct 2017 at 23:49
Hi just replying to a few of your questions my oh had routine bloods at gp raised psa22 no symptoms,2 weekbfast track to urology 13 days later had appoontent, nurse specialist carried out dre it was fine told oh she would book him for random trus biopsys explained breifly side effects etc gave us leaflet with info, i asked her if possible if he was able to have mpmri before biopsys which id already read up on, said we would pay private if need be but for different reasons ours at the time my oh doesnt get paid for odd days from work and equated 6 plus apointments for procedures results etc would probably work out same as private mpmri also less stress timewasting, also our hospital do have mpmri scanner, was told no as his psa is above 15 guidelines are biopsys first..went 8days later for biopsys oral antibiotics before then iv antibiotics before trus biosys also gave him oral ones to take homefor so many days..results from biopsys 3cores gleason6..consultant said psa doesnt tally with low grade so booked in for mpmri repeat psa but had to wait 6weeks due to biopsys..shocked but could be worse or so we thought..6weeks later mpmri repeat psa waited2 weeks for results new area for concern psa up from 22 to 27..booked in for targeted biopsys 10days later..then waited approx 4weeks for results..gleason9 t3b seminal vesicle invasion..been on zoladex5weeks now got to be on it3months before high dose brachythrapy and pelvic radio to lymph node area..my point is we could be bitter at the time its taken to get this disgnosis its been 6months now plus lots of invasive biosys plus stress of waiting results etc,it might not have gone into seminalvesicles,if mpmri first but it is what it is cant change it now and hes still here with hope of curative outcome..were focusing on trying to be positive of a good outcome not wasting negative energy on complaining or blaming anyone..if that was the case i could easily blame myself for not taking it upon myself to sort out private mri regsrdless..as i see it we all have access to information on everything we want if we wish to source it, we also have certain choices as patients of the nhs we can make our own informed decisions on routes to procedures treatments which are already stretched within our nhs, which i by the way am very greatful for..long post im sorry but just wanted to put a perspective on things..lifes sometimes too short for blame and liability..well for me anyway it makes me miserable and im of the mindset none of us are perfect always room for improvement even our fantastic nhs..jo.x
User
Posted 20 Oct 2017 at 00:18
Hi lynn sorry to but in, how youve just explained how you was angry at the cancer not the medics and too young to be hit by it mirrors exactly the way we feel, i love your take on the way you express your views and posts, also read your post about e.d, my god i was in tears, probably because were going down that road at the minute it just makes me sad for him and for me and what weve lost, your honest and open from the heart and say it how it is..and its probably a little bit to do with been a bit yorkshire that i get you.. Id say your a bit of an inspiration on here lass.😊.were up your way next week at jimmys to see about high dose brachy they dont do it up in hull..my daughter also lived there for3 years went to your uni..🌍.jo.xx
User
Posted 20 Oct 2017 at 09:04

Thanks for above long reply1


Can I just point out that you used the words 'blame' and complain'-and you see no point in doing either.If you (as,from what I read,and apologies if I read that wrong) interpret seeking answers to questions as 'complaining;,or imply that I should not do so,I do not find that very helpful!-it is your perspective,and whilst I really appreciate your input and sharing of experience,ours was and remains different-and the 'informed choices' that you mention to be available for nhs patients to make were,in our case,neither apparent (due to lack of information and being rushed),offered or,once we had sourced the information and stated our choice,taken on board..

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
 
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