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!

Radiographers will often say if they've found nothing on an ultrasound, but its still up to the clinician to properly interpret the result and give it to the patient.

Realistically for this exact reason. Probably the radiographer thought they were doing a good thing in reassuring the OP they've seen nothing of concern. But something was later picked up on the report,and now OP feels she has been lied to.

I don't think anyone is lying or withholding information. By asking for MRI they are just being cautious often ultra sounds don't show things as clear as they want. I've had loads of ultra sounds and so has my dd and they never say anything when doing the scan as they review the scans after you have left and often several people look at them before report given. If anyone was concerned anything really serious I'm sure they would say.

@CarPoor The consultant said he has very little clinical concern because he felt the floor my my mouth where this “supposed” cyst should be and couldn’t feel anything. To me, that reads like he is doubting its existence but if it did exist he would have concern. Yet, the ultrasound showed it did exist.

Because he did not tell me about it, I have not been able to ask any questions. The timing between ultrasound and MRI may have been quicker usually but it feels to me this consultant seems to think he knows better than the radiologist.

OP, I think when people sense you've lost trust in them, then they in turn clam up. So, you were rattled - fair enough, their comms were poor, & so dug deeper. That made them nervous so they 'won't talk to you'.
It sounds as though you are getting all the correct investigations in a timely manner. That's what matters most.

When the vast majority of posts on here about the NHS concern delays, the inability to get appointments, no staff, it could be seen to be in bad taste to complain about having multiple tests, consultation appointments etc in a very short time.
At your last appointment with the consultant, why did you not question the need for an MRI referral? Surely that was the time to do so? Go for the MRI, wait for the follow up appointment, have your questions ready but for goodness sake stop hounding what will most likely be a massively overworked doctor. You are massively over thinking the events.

BTW, I had an abdominal scan 2 weeks ago and got the results from my GP yesterday. The person doing the scan told me it looks normal but that it would be reviewed and results sent to my GP. They are usually only technicians, not diagnosticians.

He probably does. That’s why he’s a consultant.

No it means he can't feel anything of clinical concern, as he said. Which means there maybe a small cyst. But nothing of concern that would need any action

Scans pick up little things all the time. Radiographers are good, but ENT surgeons are the experts on that region. Hence why the consultant is the one who gives you the results. The consultant knows if something picked up on a scan is of any significance.

I think you need to calm down, stop accusing people of lying and just wait for your MRI at this point. Things have been explained to you but you are looking for things that aren't there

Also yes the ENT surgeon does know the sublingual gland better than the radiologist. That is why they are an ENT surgeon and the radiologist is the radiologist.

They radiologist knows how to read the scan better, hence why they work together and put a clinical picture with a radiological one. And to be on the safe side are ordering an MRI.

He is a consultant, not God.
Consultants can be wrong. You are allowed to question them rather than just blindly believe them.
And it still doesn’t allow them to nit communicate and gain consent from their patients.

fwiw i suspect you’ve never been facing a new diagnosis you didn’t expect. You dint always think about all the questions then. And you certainly don’t think about asking questions about things you know nothing about.

@WakingUpDistress but he's ordered an MRI so it's a moot point. He's not dismissing the radiologists findings, but he's using a clinical exam to put them in context and ordering further investigations.

@CarPoor but he didn’t tell me ANY of this. He still maintains the reason for the MRI is unrelated to this cyst, even though my GP and the MRI department have both now said it is to have a closer look at this cyst. So who is right??

This sort of thing really pisses me off. It's not up to them to decide what they do and don't tell you. How dare they assume some sort of protectionist role.

As I said earlier, it's probably both. You've had a lump in your neck. Nothing has been found

An incidental finding of a cyst on an us combined with a neck lump suggests MRI to make sure nothing has been missed on the ultrasound. He will add the cyst onto the MRI request to provide context

But he sounds like he doesn't really have any clinical concerns and is just doing an MRI to be on the safe side

I do not understand because every scan I have had even when I had bilateral pulmonary embolism and had a ct scan those doing it are not doctors and are not allowed to say anything as I have asked them. They always say u must wait for a doc to tell you which in my case that happened so not sure why they are telling u as those doing the Ultra sound are not a doc at all. I have had various ultra sounds again can’t say anything wonder if it differs in trusts?

This. Usually for ultrasounds it's a sink graphed and they don't say anything. Occasionally it's the consultant who does it so they'll say something.

@Freespirit42 I’ve had 3 or 4 ultrasounds over the years outside of pregnancy, and they’ve told me every time - but until this one, everything has been normal! If it’s a consultant radiologist performing the scan then they can tell you.

I think the trouble is, cysts and shadowing are essentially normal findings.
They haven't found any cause for concern, and until the MRI adds more information they can't say otherwise.
So 'normal' isn't untrue, it's a fair description of your ultrasound. I think it's the secretary's error here. Information without explanation/context isn't helpful. And the MRI will provide that

I don't think they are withholding information. Had you queried the reasoning at the time it may have been explaining more clearly. Your subsequent queries are anxiety driven. Investigations are underway to get a fuller picture. It is not unusual for one set of scans to follow another, or for one to be unclear and either need repeating or a different one requested to clarify. Good luck with the mri.

I'd be reassured that you have had every test done in a timely fashion and the clinicians involved in your case are being thorough in their investigations. You can always request a change in consultant, of course, but that will probably just delay getting your results as you get transferred onto their lists at the back of the queue. They can't give you any definitive results yet as they haven't done all of the scans. And they aren't proposing to do anything invasive so I don't see how you're badly off by what has happened.

OP,
It is a normal practice to refer for MRI when you don't image the region well.
Which is what the shadow from the mandible means, it's a bone. Cystic lesions are pretty easy to identify on US. The fact there are no concerning features is good.
Try not to think of the worst scenario it is highly unlikely.

@Loki01 thanks for the reply, however the secretary read from the report and it said an “abnormal shaped cystic lesion”, which obviously fills me with dread.

This is why I’m angry. If it was an incidental find, a confirmed simple cyst that didn’t need further investigation, there would be no need to tell me. It doesn’t feel like that’s what we are dealing with though.

@LIZS When the consultant said we would be doing an MRI, I asked him if it was necessary. His exact words were “it’s necessary so we can close the book on it.” Therefore, the information regarding this cystic lesion was withheld.

You do though. Because it's abnormally shaped. It's just the way it works, as the consultant said it. To close the books on it.

Unless you are a clinician, these reports always scare you. Its the way its written.

@WakingUpDistress but the MRI request shows that even if the consultant believes it’s fine, they are still investigating. The radiologist could be equally wrong. It’s why radiologist often don’t say ‘oh it looks fine’ because it’s always re-checked.

@Whathefisgoingon im surprised the secretary read it out over the phone, we are always trained never to do this. We have no clue who we are talking to over the phone, in addition we don’t have the knowledge to alleviate concerns or answer questions. Which in your case has caused a lot of tension that she can not address.