Dr called my mum and she's terrified. Hand hold please.

[SaunteringDownwards]

My mum has had a lot of issues with her lungs recently and went into hospital for a bunch of tests and scans. She's just called me in pieces because a Dr from the hospital said they need to have a meeting to discuss her results as they are concerned about a swollen gland that runs from her neck to her heart. She said it began with an F but the Dr had a heavy accent so she couldn't make out the word. He also asked her if she had any weakness in her eyelids and if she's tired a lot? (she is exhausted but no eye weakness).

I'm in a wreck and fearing the worst. They are worried she has cancer aren't they? What gland might they have been talking about?

Any ideas or just a hand hold would be really welcome.

Can you check on the NHS app? I think the best thing is to call back in the morning and clarify.

Thymus gland? (Very few languages have a Th and so most non-native English speakers usually make the noise as an f or d sound typically).

Unfortunately I don't think googling about it will make you feel much better.

That's my guess (but I'm not a dr). And the eyelid thing (and lung issues) would correlate with myasthenia gravity. It's an autoimmune thing.

The good news is, she's in the right place to get all the tests and treatment ASAP and there is clearly a Dr who is on the ball taking care of her.

Yes! She said it was Thymus

I've googled for you in case it's scary and the first thing I read was this

Thymic hyperplasia is usually treated with thymectomy and has a good prognosis. A doctor may order a CT scan, MRI, blood tests, PET scan, or lung function tests to diagnose an enlarged thymus gland. Thymic hyperplasia is usually treated with thymectomy and has a good prognosis. A doctor may order a CT scan, MRI, blood tests, PET scan, or lung function tests to diagnose an enlarged thymus gland.

I've continued to read. Removing it does not cause any ill effects as we don't need it in adult hood. I would relax and wait and see what the doctor says xxxx

That was kind of you @DrunkTinkerbell40s. I am worried but it does seem like it's not necessarily cancer which is the main fear.

I totally understand xx it looks like it's most likely auto immune. They'll investigate it and treat it accordingly but I think from the looks of things, more likely to be auto immune than anything sinister xx

Just to update. She's was diagnosed with IPF via letter this morning. The prognosis is poor and we are in complete shock and furious that we had to find out this way.

I'm sorry it's sounds very traumatic for you all

Oh that's awful for you to just receive a letter how thoughtless. Did they not arrange the meeting? She should ask for a follow up asap. Lots of good wishes to you and mum.

I almost typed "unfortunately it isn't cancer" isn't that crazy? It being something else even worse never even crossed my mind. She has IPF, there is no cure and survival rates are very low three years post diagnosis. I'm seeing the Dr with her this evening about possible treatments etc. I'm praying that she can be considered for the transplant list, she is only 62.

Oh I’m so sorry

This is what's shocked me, no call or anything, just a letter with 'new diagnosis: ipf' written on it, is this just standard practice now? Can't believe they would tell us this way.

Bloody hell that's shocking. Why not tell her in person ? I'm so sorry.

I'm stupidly hoping it's some mistake or they just think she may have it but it's not confirmed or something because to be told via letter this way just seems so crazy. The GP gave us an appt for this evening though to confirm thankfully so hopefully they can look up exactly what the specialists have said. She didn't even know what it was initially so googled it then called me. She had to find out it's terminal via Google by herself.

I have nothing medically useful to add, but just wanted to say that I am so sorry you are experiencing this. Both my parents had to endure life-limiting illnesses and I know only too well that punch-in-the-stomach feeling that you probably have right now.

I hope you have better news, my thoughts are with you as you navigate Mum through the times in front of her

I'm simply too young to have no parents. I don't understand, she only had a lingering cough but up until this spring she was so healthy and had an allotment, she doesn't seem ill enough for such a serious condition.

Oh no OP - so sorry to hear that. I suspect that they were supposed to call her and arrange a conversation before the letter went out but that there was either a delay or the secretary was a bit too efficient.

Try not to worry too much until you see the GP. On the NHS page for IPF it says:

IPF gets worse over time, although the speed at which this happens is highly variable. Some people respond well to treatment and remain relatively free of symptoms for many years.

She's young to have it, so if she is otherwise fit and healthy, it may be manageable even if it is not curable.

Fingers crossed for the conversation with the GP to be on the positive side.

Really hoping it's not as bad as you think 🙏

Good luck with the GP - that's terrible to send a letter like that with no conversation

My dad has ipf (along with other lung conditions such as copd). He has just started a treatment program for which he underwent a series of tests to see if he was a suitable candidate. The drug is designed to slow the progression of the disease.
There has been a rise in diagnoses in recent years, partly as a knock on effect of Covid - more people having various tests post-covid and IPF has been detected in testing. It was a shock, particularly as he didn’t tell me for about 6 months. Googling is not a good idea. Sending positive thoughts to you and your mum.

@BearPear I hope the treatment is a success.

Whatever is or isn't wrong they're going to investigate. That's the best thing. Either they can then treat her for this or rule it out. Lots of people wait ages and ages for appointments at the hospital so tell her how it's great they're seeing her quickly. Go along with her. I wish her well x