Waiting for test results - scared witless

[DaisyMOO]

Sorry this is going to be long...Three years ago it was discovered that I have a high calcium level and was told that I probably had a benign tumour on one of my parathyroid glands. Earlier this year at a routine appointment the doctor suddenly mentioned that I may have a genetic condition called MEN-1 that can cause parathyroid tumours and others in lots of different places of the body. Back in May I had blood taken for genetic testing and was referred to the genetic counsellors to discuss it all. The appointment was back in July but I couldn't make that date and had to cancel. I got a letter a week later saying that they would get in touch shortly with another date. I've heard nothing since and part of me is wondering whether they've cancelled the appointment because the genetic tests were negative, but maybe they just forgot to put me on the waiting list?

I told the endocrinologist that I didn't want to be contacted at home with the results of the genetic testing, but then wouldn't they have contacted me anyway if the results were negative to put my mind at rest?

I have an appointment two weeks today with the endocrinologist when I know I will be able to get my genetic results. I'm so scared and can't stop crying. If I have the condition there's a 50% chance that each of my children will have inherited it and I'm also scared that I won't live to see them grow up. My husband doesn't want to talk about any of this and I keep trying to keep it all bottled up. Outside I'm all cheerful and positive but inside I'm falling to pieces. A large part of me just wants to go to sleep and never wake up but I want to stay with ym children so much. I am just so terrified.

Big (((hugs))). I'm so sorry you're feeling scared at the moment. When you're a mum your own mortality is really frightening isn't it? I think you need to sit down with your husband and tell him how bad you're feeling, at the end of the day he should be there to support you through this. Bottling up this fear will only magnify it. You need to express all of this and have a good cry if you need to.
Does the hospital not offer any sort of counselling service? It might help to talk to someone who is removed from the situation. xxxx
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Thanks milkymill. I howled after writing this all down and I do feel better somehow.

I think the genetic counselling service is supposed to be partly for support, but for whatever reason I haven't been sent an appointment to see them, so I expect I will have to ask to be referred again and then wait the 6-8 weeks it normally takes to get an appointment

I'm keeping my fingers crossed that you get the right results. x

oh daisy don;t really know what to say, how painful, how scary

is there a support group you can see? push for an earlier appt, call the consultant's secretary and explain, or maybe your GP can call and get you an appointment sooner?

you are allowed to fall to pieces, and show people that you are having a hard time...

wish i was a nearer, i;d be round like a shot with tea and flapjacks (hugs)

Thanks Lulu There is an online support group that I've been looking at which makes me feel a bit more optimistic - people living with it in their 50s or older. I keep holding on to the hope that by the time my children are adults there will be some sort of cure and trying to think of how lucky we are to live in a country with excellent (most of the time ), free healthcare.

I could find out any time I like by emailing my consultant but I am too scared because I don't want to find out on my own - hence asking not to be contacted at home. It sounds pathetic but I'm petrified of finding out accidentally - I've got an MRI booked for tomorrow which I've cancelled in case the radiographer accidentally lets it slip, I think I've got a chest infection but I'm too scared to go to my GP in case he/she has it in my notes and tells me. Really stupid I know, but I've got this tiny hope still left that the results might be negative and I'm too scared to let it go by finding out the results

poor you daisymoo. do you get on with/trust your gp? might it be worth making an appointment with him/her to talk it through - would you be happy for them to give you the results?

i too am a head in the sand type of person in health terms (i have diabetes) & really hate having to confront it. so i totally understand where you're coming from. take care. xxx

There is one GP who I really like. Trouble is I don't know whether or not they will have my results and I can't bear the thought of getting all psyched up to be given them, only to not find out after all.

I'm feeling more or less resigned now to them being positive, just need to get through the next few weeks I think.

Thanks for your support.

Oh, Daisy. My fingers are firmly crossed for the best result. It must be very, very frightening ... but please try not to worry too much. Positivity is key. Deep breaths, take care of yourself and your own ... and keep us all in touch with what's going on.

It helps to post here. You'll get huge support, and some relief from your anxieties. It's very easy to beg you not to dwell on it ... it's obvious that you will. But try to keep your thoughts positive. Try as hard as you can, and we'll all keep thinking of you and your difficult appointment in a fortnight.

Fingers very firmly crossed xx