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!

Either way, I’ve spent the last week absolutely petrified, trying to figure things out for myself, research the possibilities of what this could be, and we all know what Google says regarding these things.

It should have never happened, because I should have been told at the time and been given the opportunity to ask the questions I now have. Instead, I’m sure I’m going to receive a cancer diagnosis and can barely look at my 2 year old
without tearing up.

It's a huge leap from small cystic lesion that clearly they are not overly concerned about to cancer.

Have you asked gp for help with your anxiety over this? This may be exactly the reason they answered your question so literally as telling you more is currently conjecture.

@LIZS I’d say it’s not telling her what’s going on that is making her anxious tbh.

@WakingUpDistress absolutely.

But it would differ from patient to another.

I agree with this

Everyone up and down the country waiting for scans and results will have the same thought. You have a lot indicating this is not cancer and are getting a thorough check. I don’t know how you control your anxiety but personally I’d

• ban myself from google
• distract myself from thinking about it
• stop fixing on this one bit of perceived miscommunication
• wait for MRI result

You couldn’t be further from the truth. And I didn’t say, or even imply, that the consultant was ‘God”. Consultants clearly are not ideological beings that live in people’s imaginations. They are human beings, with a vast amount of experience in their field who may occasionally make a mistake. The OP is quite reasonably anxious about a health concern, but that anxiety is causing her to blow things out of proportion.

Well, I had the MRI on Monday.

Petrified isn’t the word. Everything I read about tumors in this specific area is a death sentence, albeit a decade down the like as it almost always comes back.

Its extremely rare and I wouldn’t be surprised if the consultant had never seen it in his career, hence his attitude towards this being nothing.

When do you get the results?

@nether My appointment is booked in for two weeks time.

I would assume (hope) if they find something they will see me sooner.

You'd be very surprised what rear conditions consultants have come across. It sounds like your determined to believe its something bad because you've been on Google. Step away from Google- maybe speak to your gp about your anxiety

@hugznotdrugz I’m not determined, I’m just being realistic. A consultant doesn’t order an expensive test such as an MRI for nothing.

I do suffer with anxiety but that doesn’t change the facts here.

It's natural to be anxious whilst you are having a lesion investigated. I don't think it's something to see a GP about whilst all this is going on

So sorry about how anxious you feel OP. You must stop googling it is not helpful at all! Because you are anxious your mind defaults to the worst case scenario but its playing tricks on you, making you think irrationally. The chances of it being cancer are very very low by the sounds of it, but it is not necessarily a death sentence if it is. Cancers of the lymph nodes are generally very treatable. I hope you can try to distract yourself whilst waiting OP xxx

@ELL2478 Thanks for the reply.

Things don’t look good from what I’m reading. I lost my own mum when I was 15 and it truly messed me up for life. I didn’t realise it until the last few years.

Now I’m so scared for my son. I don’t know if it’ll be worse losing his mum at his age, or will he just forget. He certainly won’t understand, he’s only 2.

This is all too much. I’m so scared for him. It’s not even for me.

So sorry about your mum. It sounds like has impacted you massively and is fuelling your anxiety, which is understandable. I hope you aren't waiting too long for the answers you want. Let us know how you get on if you are able too. Xxx

For anyone reading this, my MRI was normal!

Excellent news!

I hope you can relax a bit now.
Maybe also reflect on the fear you felt, and how it is/could be related to the awful loss of your mum? You said how you hadn't realised the extent of the effect on you.

Have you contacted bereavement charities, perhaps there is some help out there to manage the fear?

I'm glad to hear your MRI was normal, OP.

It's not unusual for children who've lost parents to have health anxiety in later life. I wonder if you might consider seeking some advice or counselling to mitigate it in future.

@TheSpottedZebra @PinotPony

Thank you. I’ve had a fair bit of therapy as an adult but I feel it would have been better when I was younger. At the time I didn’t really present with any anxiety, I was in fact “the strong one” in the family which now rings alarm bells.

One therapist did suggest bereavement counselling and I have considered it. I actually think there’s more going on, so will potentially see a psychiatrist to rule out anything else first.