Biopsies and informed consent - - Page 2Being diagnosed with prostate cancer

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

User

Posted 10 Oct 2017 at 23:15

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 08:42

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 09:14

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 09:27

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 13:06

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 11:22

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 14:26

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 08:01

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 08:04 | Reason: Not specified

User

Posted 18 Oct 2017 at 08:54

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 09:07

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 13:16

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 16:38

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 17:25

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 17:51

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 18:55

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 19:53

thanks clare :)

User

Posted 19 Oct 2017 at 20:10

and care :)

User

Posted 19 Oct 2017 at 22:49

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 19 Oct 2017 at 23:18

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 08:04

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..

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.

Notification

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

Join the online community now.