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.

I understand this feeling. My dm was diagnosed with stage 4 lung cancer a couple of years back. You readjust. You never take them for granted again and you make the most of every previous second. Just as we should but never do until a diagnosis like this happens. Sadly people lose parents (or indeed any loved ones) at any age, sometimes very suddenly. I am so sorry you're having to accept this reality - it's not nice but can be reframed to help just a little x

My mum had IPF but much older than your mum. She passed 8 years after diagnosis last year. She didn’t get to the stage of needing oxygen. Make sure you go with her to GP and Consultants as it’s so easy not to take everything in. There are support groups too.

I know this is going way ahead but later if she has to go for breathing and walking tests - get them on the same day together with the consultant appt. Mum would get all different dates initially - the tests are only 10 minutes - until we asked.
There are drugs which can prolong life but aren’t a cure. There are lots of side effects and a sensitivity to sunlight. Mum did try one of them but was very sick so didn’t continue with it. But everyone is different plus she was much older.
It is a shock initially but as you get more information and next steps it will help you. Sending love to you.

Are you sure they didn't discuss it with her when she had her appointment, and the letter was the confirm the discussion? Some people struggle to take it in during the appointment hence following up with a letter.

I hope your gp could explain more

I can't know for sure but she's convinced they never told her, they only mentioned copd. The diagnosis was confirmed this evening via GP who was also really puzzled by the letter she received. I'm in complete and utterly disbelief. My mum is the cornerstone of my life. My children adore her. I just don't think I'm ready to even begin to wrap my head around it.

Sorry about your mum OP.

Treatments for IPF have come on quite a bit - I think the stats which say half die within 3 years of diagnosis are quite out of date and the prognosis is quite a bit better now.

Katie prices mum had that and I believe had a successful lung transplant.

Big hugs

I don’t know much about IPF but I do know my FIL was diagnosed with it about six months ago. He called us to say he was dying, which was a shock, but a few months down the line and he’s doing really well. He’s not “ill” and is having treatment which can slow progression (I’m sorry - I don’t know what exactly). He has come to realise it’s not a one-size-fits-all prognosis and is doing ok with that knowledge. Going to a support group and seeing that people are living with the condition, not dying (if that makes sense), has really helped him.

I wish you and your mum well. My heart aches for how you’re feeling right now and I hope you and your mum can get answers and a treatment plan in place soon x

What a horrible diagnosis to get by letter, what are you supposed to do with that information? It’s cruel. I hope they treat your mum better than they have and that you have many healthy years together. X

My mum doesn't seem ill either. It's so shocking to hear the GP say all this stuff to us while she sits there looking fine. Her cough isn't even as bad as it was. I'm really sorry to hear about your FIL.

I am really sorry to hear this OP, what a horrible shock. My mum was diagnosed with heart disease by letter a few weeks ago - it's not right. Like your mum, she'd had a bunch of tests, and was expecting either a call or a follow-up appointment. What's worse, I was on holiday at the time, so she sat on the news for a whole two weeks without telling me or anyone else.

A family friend passed away from IPF last week. He was 80, and was diagnosed at 69. He lived a pretty normal and active life for 9-10 years after diagnosis until the last 18 months or so. I know the prognosis rates are scary but as another poster said, there is some doubt as to their accuracy. Sending you love and strength.

@EricTheGardener that sounds hopeful for @SaunteringDownwards mum.

So sorry you're both going through this.

Unfortunately it seems as though she has the beginnings of right sided heart failure also, so I imagine this further decreases her chances of surviving a long time with the disease. The Dr thinks she has had it probably since she was in her fifties and is only now finding out at an advanced stage due to a lung infection brought on by covid.

I'm just getting into some weird adrenaline fueled planning and cleaning mode right now for some reason and have done four loads of laundry this morning. DH has no idea what to do with me. We've decided to not tell the DC's for the foreseeable future, my youngest is autistic and just lost one of her little friends to cancer so she would really struggle with this news at this stage.

Ultimately my plan is hope for the best, prepare for the worst. Do everything the Dr's suggest and just respect my mums wishes which are currently as little medical stuff as possible and keeping things totally normal for the DCs until after Christmas at least.

Gosh @SaunteringDownwards , Im so so sorry x