Hospital withholding information from me

[Whathefisgoingon]

A few months ago I visited my GP with complains of what I assumed was a swollen lymph node in my neck. GP was not concerned, however it had been there for some time already and when it was still there a few weeks later, I completed an econsult requesting an ENT referral where I was seen within two weeks.

The initial ENT consultant I saw performed a nasoendoscopy and advised everything looked normal, they also advised the lymph node felt small but would refer me for an ultrasound for 100% reassurance.

On 11/10 I was seen by radiology where I had my neck ultrasound and was advised by the person performing the scan that everything looked normal including my lymph nodes. My follow up was booked with ENT for 25/10 where I was advised again that the ultrasound was normal however I would be having an MRI. This made absolutely no sense to me whatsoever since all results had supposedly been normal and the initial ENT consultant had said the ultrasound would be definitive.

I received an MRI appointment for 07/11 which will be 4 weeks since the ultrasound appointment, but still confused I requested my consultation notes/letter where it became clear the ultrasound had not been able to visualise the area correctly due to "shadowing from my mandible." This was not explained to me by radiology or ENT. Upon further investigation, radiology also stated I have an "abnormal shaped lesion, likely a cyst" present which again was not mentioned to me and has not been mentioned to me by either clinician to this day.

I have spoken to radiology who advised that since I was anxious, this is likely why they did not mention any details to me - absolutely unacceptable in my opinion to tell me that everything was normal when they couldn't actually confirm that.

As such, I am left absolutely petrified as to what this lesion could be. Since it was not mentioned in either appointment, I was not able to ask any questions about it. I do not understand why a biopsy was not performed at my ultrasound and I do not understand why I have had to wait 4 weeks to have it visualised correctly if it is of enough concern for an MRI referral.

I’m furious. Am I being unreasonable? The ENT consultant has not even mentioned this “abnormal lesion” in the letter he wrote to the GP, in fact he has stated he feels reassured and would be surprised if anything of concern is found on the MRI!

I feel for you. I am having some health problems too. My consultant who i saw Friday evening 8 weeks after a CT scan asked if i had heard from the surgeons. When I said no he seemed very anxious kept asking if i felt ill and had I lost weight. He said that he had written to my GP asking them to refer me to the surgeons. This morning i called my GP and they haven't had any correspondence from him nor have the appointments centre at the local hospital. I think it must have been overlooked. He said the CT scan was inconclusive. I had a biopsy which I was told was clear several weeks ago., but am now wondering if that was correct. I've spent all weekend worried sick. I wish i had known about the referral at the time as i could have chased it up.

@Nicklebox Sorry you’re going through this, I’m sure if you got the all clear from the biopsy then that much is ok.

It’s hard to have faith in them when things like this happen.

Op, call the consultants secretary and explain the above. Ask if it is possible to have a quick call from the consultant to discuss this discrepancy. Make it clear you are really unhappy about this whole situation, and that you may consider making some form of complaint, explaining you wouldn’t want anyone else to go through this uncertainty.

@PrettyMuchBollocks

Thanks for the reply. I explained this to the secretary, then contacted PALS who chased it up. I asked initial questions Thursday last week and still nothing.

It was the secretary that told me about this “cyst/lesion”, not the radiologist or consultants. Perhaps they didn’t tell me because it wasn’t significant? But I am not sure and have questions I should be able to ask.

I have an almost 3 year old and this is incredibly distressing.

At every appointment I have had (ultrasounds, MRIs etc) the person conducting the scan has always explained how they can't comment on the scan itself and it will be done by the consultant (usually in the form of a letter)

@OhRiRi I’ve had the opposite. Every ultrasound they’ve told me there and then. In the most recent one I’m referring to, when I asked if there was anything worrying they went as far as to say “if there was, I’d be sticking a needle in it” then typed up a report to the consultant saying “cyst” in question marks ? Cyst ? -like so.

The secretary should not have told you. Not being able to see something is not “not normal”. If you they thought you needed a biopsy, you would have been referred for one, not an MRI scan.
Yabu it sounds like you have a cyst, something that didn’t need biopsy, the consultant even wrote he doubts it is anything to worry about. You are now getting an additional scan for even more information.

@DuoLingoMakesMeBingo I didn’t ask for the MRI. They told me everything was normal but I was having an MRI. Don’t you think that’s a bit odd?

It's unlikely your scan was done by a radiologist and much more likely it was done by a radiographer. They don't talk you through the scan as they are reported later by the radiologist.

It's very likely that your scan got reported, the radiologist couldn't see everything they wanted and just booked you straight for the MRI.

Unfortunately this is how it works nowadays, there is not the time in the system (which is totally overloaded) to phone you or bring you in for updates each time, they just book whatever investigations and explain it all at the end.

Same here @OhRiRi and it’s always an anxious wait.

@AnnaMagnani She talked me through it and said “she” would be sticking a needle in anything suspicious. So surely she was a radiologist? In any case, they didn’t book the MRI - they suggested it to the ENT consultant who booked it when I saw him two weeks later.

In that case she probably was. Sounds like she's looked back over the images when it came to reporting, thought a bit could be visualized better and suggested the MRI.

On the other hand she clearly didn't see anything she wanted to biopsy while you were there, which is good news.

@AnnaMagnani the fact the system is overstretched is NOT the time to let go of normal standards. Because when you do, then it’s assumed that it’s actually ok to work in that way because no one is complaining….

@AnnaMagnani or, they couldn’t visualise this cyst enough to biopsy, hence MRI.

Whatever the case, I haven’t been able to ask any questions because they didn’t tel me about it, and now I’m left to guess and worry.

So, the consultant refuses to speak to me. Has has told PALS this morning there is no clinical
need to speak to me until I’ve had my MRI.

Spoke to my GP this morning who was finally the person to go over the ultrasound findings and said there is a possibly “cyst” in my sublingual gland. Again, can’t ask any questions about this since the consultant won’t talk to me and never mentioned it.

Ive asked for a different consultant as I want nothing to do with this one who clearly has zero empathy.

Am I being unreasonable? The ENT consultant has not even mentioned this “abnormal lesion” in the letter he wrote to the GP, in fact he has stated he feels reassured and would be surprised if anything of concern is found on the MRI!

I think you are.
Honestly I don't think you are helping yourself. They are not witholding information they are bending over backwards to get accurate information.
I'm not surprised the consultant won't speak to you as they have already given their opinion to the GP and would just be guessing before the MRI.
If there was serious concern you wouldn't be waiting 4 weeks for the MRI.

@Mosik They gave their opinion to the GP, but didn’t tell me anything!

I spoke to the GP today and they were professional enough to actually go through the ultrasound findings and explain that I have a “cystic lesion” in one of my salivary glands. Radiology then basically confirmed the MRI is to assess this lesion.

You think it’s ok for the consultant to withhold that information from me? I had absolutely no clue when I left the appointment.

That was terrible for them to do that. I’ve been a nurse for twenty years and have never met a doctor that would withhold information like that. Really not good.

I'm not surprised the consultant won't speak to you as they have already given their opinion to the GP

I fully disagree with that statement.
The consultant is working the patient, not their GP. It’s not ok to let the GP explain what’s going on when they wi t have all the info available (they only get a summary).
Its also very poor practice to let the patient in the dark, not explain what’s going in (cue for panic in the side if the patient….) nor letting them know why they should the MRI.
fwiw consent is needed all the way and that’s included when having a test such as an MRI. How do you expect a patient to give their consent fir that test if they dint know they need it??

@WakingUpDistress That’s how I feel.

Eventually, when I asked to change consultant, he relayed a message via pals stating he is not concerned, the MRI is to try and help find out why I had my initial complaints, this cystic lesion is unrelated, and he felt where this “supposed cyst” should be and “couldn’t feel anything” - what is he inferring? That the radiographer is a liar?

Also contradicts what the Gp and MRI have told me which is very much that the MRI is to get a better look at this cystic lesion.

Your experience is unusual - scanners are normally under instructions not to tell the results to patients on the spot. That result needs to be put together with any other diagnostic information by the doctor requesting the investigation.

I do however think its bang out of order that they didn't tell you, when you got your result, that they had seen what they believe is a cyst which appeared benign, but they need a closer look under MRI. Then you would have properly known what was happening.

They won't perform a biopsy until a doctor recommends it - and the need was not foreseen. If it's a benign cyst, then you may well have no treatment unless it grows. If lymphoma is suspected (because it's the actual lymph node affected) then your will care be transferred to haematology and the biopsy is actually an incision and the removal of the node. If it's a different cyst, it may be a different procedure but probably with your current team.

Hoping for your sake it's the first.

But do get PALS on to it. This sort of poor communication is entirely avoidable

what is he inferring? That the radiographer is a liar?

No, nothing of the sort! He is stating that the cyst cannot be felt under his examination, and was an incidental finding when scanned (also, means your lymph nodes are not giving cause for concern which is good). So he's referred you for further scanning which will give a considerably more detailed look. That is entirely normal and correct

But yes - the communication is shit - reading it again it sounds like perhaps they didn't get a decent look at your lymph nodes

I'd pursue that point specifically

I think your being a bit dramatic about it. Yes the ENT consultant should have told you why you needed the MRI and yes the communication sounds poor, but you are getting the appropriate treatment. It sounds like you have spoken to the consultant

Shadowing of the mandible is a common thing written in ultrasounds of that area. It means very little. The cyst is probably an incidental finding picked up by the radiographer in your report. O

By saying he cany feel anything hes not saying the radiographer is a liar fgs. Hes saying he can't feel any lumps etc indicative of anything of concern. And again it's probably an incidental finding. Scans will obviously pick up these sort of things all the time and it's up to the actual clinician to interpret the results.

To me it sounds like they've found nothing much on the scan but perhaps they've felt the lump in your neck and because they can't completely get to the bottom of it, coupled with an incidental finding of a cyst they've opted to take a safe approach and order an MRI

You seem to be wanting an awful lot more information about every single stage of investigation than most people would want. I imagine that's why they've skirted over things. Ypu've actually quite a lot of investigative work done over a relatively short amount of time. I think "normal so MRI" doesn't mean "this is 100% normal and we're doing an MRI for no reason" it means "we've found no abnormalities so far i.e. it is normal so far, but we need to do an MRI to exclude other abnormalities that wouldn't show up on an US". In your position I would wait until everything is done and then request an appointment to discuss all of the findings. It's difficult, but whilst investigations are underway It's necessary to accept some degree of uncertainty.