New and concerned about nhs timescales

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.

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 

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

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

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. 

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.
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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

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