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New and concerned about nhs timescales

User
Posted 12 Jun 2018 at 22:24

my partner is 57 and of Caribbean ethnicity.

On 30 march he was admitted to urology after travelling to A & E during the night with severe stomach pains. His bladder was not emptying fully and he had 2 litres of urine retention. He was catheterised and had to stay in for 2 nights to make sure there was no kidney damage - luckily there was not. He had DRE which showed enlarged prostate. He was told he will need surgery I'm assuming this is a biopsy and that this could be done within 2 weeks as there was a new surgeon starting or would be within 4 - 6 months. He had a PSA reading of 11.

This morning he had severe stomach pains again and went to minor injuries unit who said his catheter was blocked. He went back up to urology and the same Dr changed this - the balloon had actually dropped in his bladder. He has had a pre op assessment couple of weeks ago his PSA is now 12 - they have said they thought this would go down. His blood pressure is also high and is having to have it monitored for 24 hours. Due to the still high PSA  level  he will be having an MRI but have said this could take 4 weeks and today said the waiting time for surgery is 1 year.

I am trying to get an understanding of what his situation could be. He is in pain most of the time due to the catheter and walks slowly and with a stick. Physically he is not able to do much - was very active prior to this and gets tired easily - I also think he is losing weight. He was not working although looking for work when went to A & E but now everything is on hold as unlikely to be employable in his current situation. However was pretty gobsmacked to hear surgery now could be up to a year!

i know there are staffing issues etc but it has already been 10 weeks since he went to a & e. I  have just looked into getting the MRI done privately to at least establish what this could be - he is obviously concerned it could be cancer. 

any advice greatly appreciated 

User
Posted 13 Jun 2018 at 01:11
lilylou, they seem to be working on the basis that this is not prostate cancer - the surgery wait of up to a year is probably for a TURP which is an operation to remove a bit of the prostate to make weeing easier. They would have been unlikely to describe the biopsy as 'surgery' so it seems from what you have said here that there are currently no plans to do a biopsy - perhaps they intend to complete the MRI first.

I think it might be useful to get him to speak to his GP to ask has the hospital written to the GP about their diagnosis so far, and the intervention plan? Or if he was allocated a nurse specialist in urology, give him / her a call and ask them to explain what they are thinking. But it does seem that for some reason that may not have been explained to you properly, they have him on a standard pathway rather than an urgent possible cancer pathway.

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

User
Posted 13 Jun 2018 at 07:56

I would ask your GP these questions and make sure you get a definitive answer as to how they have ruled out cancer.

User
Posted 13 Jun 2018 at 08:06

Thanks for replies- I was going to ask is it " normal" to be on a catheter up to a year?

and francij1 that was my next question 

I had a suspicious mammogram - they called me back to double check within 2 weeks - biopsy there and then - found aggressive cancer the size of a grain of sand - said would have taken a couple of years before I felt anything - had radiotherapy and consider myself to be very lucky.

such a contrast 

he has previous with a completely blocked bladder needed emergency treatment then and somehow got missed of the system for follow  up - want to make sure this time everything that could be done is being done - no wonder the statistics are so high if this is the normal process 

User
Posted 13 Jun 2018 at 09:03

Lillylou 

Not sure if it is "normal" to have a urethral Catheter for a year but if that is going to happen I would ask about a suprapubic Catheter which is inserted in the pelvic area about 3-4 inches above the penis. For totally different reasons I have had one for about 16 months, mine is less troublesome than the urethral ones were and it also allows for normal sexual activity. There is no painful by passing where the urine is forced between the Catheter and the urethra. Whichever Catheter he finishes up with make sure it is changed every few weeks, our area changes them anything between 8 and 12 weeks. If blocking becomes an issue talk to your district nurse or GP about a couple of flushing bottles.

As already said push your GP for some more details,a years wait does seem strange.

 

Thanks Chris

User
Posted 13 Jun 2018 at 09:08

As he's booked for an MRI that's an important next step.

An appropriate (preferably mpMRI rather than standard) MRI can identify suspicious parts of the prostate and thus help target a biopsy.

'Could take 4 weeks' might be sooner.

I suggest you urgently contact his GP and the hospital, to find out if he's on a 'potential cancer' pathway for diagnosis and treatment. And if he's not, then request he be placed accordingly.

With an MRI already booked, it's unlikely to speed things... but should prevent unnecessary further delay.

With the 'cancer' pathway, wait and treatment times are shorter than the norm... initial consult should be within 2 weeks but more commonly a month.  Treatment options vary, and should commence within a month or two. If surgery is necessary, it'll be sooner than a year.

'Having a catheter' times vary greatly... dependent on the reason originally placed, and personal preference of doctors.

Edited by member 13 Jun 2018 at 19:10  | Reason: Not specified

User
Posted 13 Jun 2018 at 11:22
An mpMRI is not necessarily appropriate for someone who is not on a cancer pathway. It is important not to confuse 'best practice' or tests that are offered in a very small number of hospitals in a limited set of circumstances with someone who is apparently under the urology service for a non-cancer pathway.

I think the most important thing for now is for Lilylou to encourage her partner to get some clarity from the GP or urology department about why he is not being treated as a potential cancer case.

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

User
Posted 13 Jun 2018 at 11:33

Ok, I'll play...


> An mpMRI is not necessarily appropriate for someone who is not on a cancer pathway.It is important not to confuse 'best practice' or tests that are offered in a very small number of hospitals in a limited set of circumstances with someone who is apparently under the urology service for a non-cancer pathway.

 

The lady who asked the original question clearly (and rightly) has concerns about possible prostate cancer...

Relative to which, after solid research and test-proving, mpMRI is increasingly becoming a routine diagnostic for prostate issues - and has a per-case cost about equivalent to a TRUS biopsy (both of which are about half the cost of a template biopsy).

And, in the absence of MRI and biopsy to rule-out cancer, the patient clearly ought to be on a potential cancer pathway... and hence any info someone provides should be oriented accordingly - toward that, rather than confining it to a urology issue.

 

Edited by member 13 Jun 2018 at 12:08  | Reason: Not specified

User
Posted 13 Jun 2018 at 17:13

Thanks again for replies - I clarified some information with him today - this all came about as he went for an ultrasound scan on abdomen for kidney stones and it was noticed that his bladder was still fairly full despite him emptying it - he was then referred to urology to get this checked but before they had started their investigations ended up in A & E with the severe stomach cramps -

 this was his second visit he had previously been taken by ambulance as had also had severe pains and vomiting but they had dismissed him with a so called stomach bug.

I can see how he may be on a " normal" pathway however to me his age, his ethnicity and his PSA level of 12 would in my mind say let's check out this isn't cancer related first.

ive talked to him today about this and  the dr saying Op may be upto a year has knocked him down - he is in pain all over again from having the catheter refitted and the thought of being like this for another year when he was thinking it may be a couple of months is obviously a lot to take on board and disrupts his everyday life.

He is getting onto Gp about MRI scan and we'll see where we go

 

thanks again

 

 

 

 

User
Posted 13 Jun 2018 at 18:59

Originally Posted by: Online Community Member

Ok, I'll play... 

The lady who asked the original question clearly (and rightly) has concerns about possible prostate cancer...

And, in the absence of MRI and biopsy to rule-out cancer, the patient clearly ought to be on a potential cancer pathway... and hence any info someone provides should be oriented accordingly - toward that, rather than confining it to a urology issue.

 

You are a delight, aren't you?

As far as I can see, unless you are the lady in question's partner's urologist or GP with access to his medical records, you are not in the best position to diagnose whether or not he should be on a cancer pathway. Nor as it happens, is his partner. It may be that the man in question has been selective about the information given to his partner (as demonstrated in LilyLou's last post, she wasn't really clear why he went to hospital or what tests had been done previously) so for all we know, he may have already had mpMRI, template biopsy, scans and the hospital were happy to conclude that actually he had BPH or that the kidney stones were contributing to the prostatitis which had raised his PSA. 

 

It does seem that he has been under the urology team for some time and has had some diagnosis so there may be good reasons for him not to be on a cancer pathway ... perhaps he has already been there and got the all clear. Perhaps he has already been diagnosed and does not want to share that with his girlfriend that he doesn't know very well. Perhaps he doesn't want to know. Since we are getting the info 2nd hand, it is hard to tell. 

 

Sorry lilylou, this isn't very helpful for you. GP probably won't discuss any of this with you unless your OH gives the GP consent to do so, so you may have to push OH to get the information that you crave and / or accept that OH doesn't want to push them. 

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

User
Posted 13 Jun 2018 at 21:10
Hi just to confirm partner has not been selective with info - I posted this without his knowledge as I want to help him get the best care and due to my own personal issues although I've been supporting him my head was already pretty full and so I could not remember full details until I spoke to him today

My stuff has subsided now and I too was shocked yesterday when dr said op could be up to a year hence why I came on here looking for advice.

I have been with him at most Gp appointments and to be honest they have been less than on the ball - he sat and waited 3 hours to see a Gp after vomiting and they just sent him home.

I haven't known him to be ill - he is normally very fit and well and so I'm also learning how he deals with this and I think he is scared it is cancer and so really wants to avoid.

I'm now a bit more clued up thanks to this site so will be doing what I can to support him and hopefully speed things up. Personally I think cancer should be first thing addressed and treatment to go from here.

I do not want him to be a statistic failed by NHS

User
Posted 14 Jun 2018 at 05:55

I'd decided to not bother with a response to posts directly oriented toward me by LynEyre, but the most recent post (13 Jun 2018 at 21:10) by Lillylou, has suggested I rethink and add this note.

-------------------------------
I've no desire to get into needless and unproductive disagreement with others, and so this is simply for clarification rather than discussion.

The advice I post here is always given on the basis of available info, and for which it's reasonable to assume a partner who posts has relevant info... so in the absence of 'cancer has been ruled out', it's logical to assume it hasn't - and thus guide accordingly.

Any view that they don't (have full info) is unhelpful to the poster - and others who may at some time be in a similar situation, and reading to become more aware.

A PSA of 12 is sufficient to get referred, and that's the basis of the objective and factual info in my initial response.

Your response to it, in appearing to be personal opinion unsupported by fact, is unhelpful and misleading... hence my follow-on clarification - which seems to have drawn another largely opinion-and-supposition response from you.
-------------------------------

Trying to keep this relevant to the original title of 'New and concerned about nhs timescales'...

Lillylou, you're right to feel 'I do not want him to be a statistic failed by NHS'. However good they may usually be, things are sometimes unsatisfactory - hence helping to prevent that in your case, by becoming better informed, is a good thing.

And, in anticipation of this note drawing-fire for 'daring to be critical of our dear NHS', I'll again refer to the entirely factual scenario of 'doctors being paid thousands of pounds to cut the number of patients sent to hospital' (https://www.telegraph.co.uk/news/health/news/10504522/GPs-under-pressure-not-to-refer-patients-to-specialists-doctors-warn.html).

Also relevant...

'Patients will be able to self-refer themselves for cancer diagnostics without needing to go through GPs' (http://www.pulsetoday.co.uk/clinical/clinical-specialties/cancer/patients-to-be-allowed-to-self-refer-for-cancer-diagnostics-without-going-through-gp/20008891.article)

'Urgent GP cancer referrals bounced back as hospitals try to manage demand' (http://www.pulsetoday.co.uk/clinical/cancer/urgent-gp-cancer-referrals-bounced-back-as-hospitals-try-to-manage-demand/20008775.article)

'New guidelines to lower the bar for cancer referral are off-putting for GPs' (http://www.pulsetoday.co.uk/clinical/cancer/nice-to-lower-the-bar-for-cancer-referral/20008785.article).

 

Overall, NHS provision of MRI diagnostics can be fairly considered as inadequate (https://www.rcr.ac.uk/sites/default/files/cib_mri_equipment_report.pdf): 'many reported being unable to undertake MRI investigations due to equipment and/or capacity limitations, exacerbated by shortage of radiographers and radiologists... imperative the NHS invest in MRI equipment ... to deliver world-class diagnostic services'.

 

I'm not posting this info to directly criticise the NHS, but to increase awareness of relevant fact... there's stuff which many don't know, and in consequence thereof, neither receive optimal diagnosis and treatment nor know that to be so.

My personal view is that the NHS has a lot of well-intentioned staff and usually does a damn good job, specifically when considered from a viewpoint of 'they don't have enough money'... but that too often, and usually directly because of 'not having enough money' the standard of care is inappropriate.

Further elaboration and discussion is beyond me, and likely irrelevant here... for which my interest is to, where able, through sharing what I've learned, help others become more informed and thus better able to manage their own situation.

So, enough for now, I have some other stuff requiring my attention before 'going to see a bloke about some cancer'.

:-)

Edited by member 14 Jun 2018 at 06:11  | Reason: Not specified

User
Posted 14 Jun 2018 at 08:55

Lillylou

Just a thought could the PSA figures you quote have been misinterpreted ? Are they definitely ng/ml, could the decimal point be in the wrong place. A PSA of 1.2 would explain the lack of urgency.

Thanks Chris

User
Posted 14 Jun 2018 at 10:30

Gulliver - I thank you for your posts - it was one of your posts that caught my attention and prompted me to get on here. 

you and I have a similar "purpose" - I post often on another board - sharing "my story" 1. Because it helps me to get the stuff out my head and 2 because I have been through one hell of a situation that if in anyway my sharing of information helps someone else then there is some reason for it ... anyway that is what I believe we are all here for to help others and lessen their burden. 

Im sorry that in doing this you have been getting a bit of a bashing - I too have experienced this - some people do not seem to get why we do what we do... but I fully get where you are coming from and I shall be looking at your links.

i get that you are not knocking the NHS - they do a wonderful  job with what they have but sometimes this is not enough and we need to take on a bit of the responsibility for ourselves within our own limitations - some have more capacity than others! 

i for one would ask that you continue posting your story - there will be others out there who will benefit - some may post - others may just read but your posting has helped me and hopefully my partner and for this I thank you.

i wish you all the best - louise x 

 

User
Posted 14 Jun 2018 at 10:31

Thanks I will get partner to check these 

User
Posted 14 Jun 2018 at 12:12
@Lillylou... thanks for the encouragement.

It's genuinely appreciated.

I figure if I'm getting criticised (which began at https://community.prostatecanceruk.org/posts/t16164-My-arithmetic-must-be-poor-----two-week-wait--is-forty-three-days), then someone else is getting a break - so I don't mind too much.

At 62, I grew up in an era of 'be grateful for what you get, don't make a fuss'.

And, while I am of course grateful - where things aren't as they ought to be I'll speak up for myself, and where able try to help others.

Sadly, NHS complaints are increasing - which could be explained by society having become more litigious.

Perhaps more notable is that the cases they lose are increasing by a greater amount - and for which a relevant element is an increasing amount of foul-ups.

In some-to-many instances the NHS stance has become defensive - rather than simply be honest about a deteriorating situation in which human error is understandable and at times practically inevitable.

Nonetheless, that doesn't make it right or even acceptable.

Rather than trying to make a political point, my concern is those who're therefore receiving less than optimal treatment. I'm thankful for the helpful info I've found here, and hence consider 'share also' to be right and proper - being sure to differentiate supportable objective fact from what's simply my opinion.

As personal experience of a less-than-ideal scenario, about eighteen months ago on a Sunday I visited A&E (I didn't at the time know about the out-of-hours service) for a worsening infection (hair follicle burst).

Sent home with a minor anti-biotic, and advice of 'this could have waited until you could have seen a GP), four days later I had emergency surgery for the issue, with an infection that had spread from groin to beyond knee.

I'm appreciative of the help I received, not unduly concerned, and certainly don't blame anyone. It's simply a genuine example of what can happen.

 
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