To be beside myself with worry?

[DaisyMOO]

2 1/2 years ago a routine blood test showed that I have a high calcium level and so I've been having various tests and monitoring. All along I've been told that it's probably a small benign tumour on a gland in my neck and that at some stage they will remove it.

Two days ago I had another appt at the hospital and the doctor told me (without doing any new tests) that there is a chance that I have a condition that gives you tumours on lots of different glands on the body, that some become malignant and that if I have got it there's a 50% chance of each of my child also having the condition, but not to worry, in a few months they'll give me an operation that will tell them whether or not I have it.

I am absolutely beside myself. I can't sleep, I feel sick, I want to cry every time I look at my children and I just don't know how I am going to get through the next few months before I know without cracking up. Yesterday I had a really important interview and god only knows how I managed to get through it without bursting into tears.

I just feel so incredibly guilty that I could have passed this on to me children and terrified for myself and them

[Rhian101]

Hi Daisy. I'm so sorry for you. Have you posted this in Health? You can't feel guilty for something that is not your fault. I know I can say that you haven't been given a diagnosis yet, but of course you're going to worry. What a stupid doctor to land you with that and then tell you you won't know for months.

Sorry, I have no helpful advice, just wanted to offer support x

[tissy]

M.E.N.?

DaisyMoo, it's very rare, there is a much greater chance that you don't have this condition. I think you need to go back and talk to the Consultant concerned, raising your worries.

[ScummyMummy]

Good grief, Daisy. Of course you are not being unreasonable. It sounds very frightening indeed and on top of that I think the doctor has handled the breaking of this news evtremely badly. Poor, poor you. Is there any means of getting further advice or information? Do you know the name of the condition so that you could ring somewhere like Contact a Family helpline and ask about it? Could you ask for another interview with the doctor or even for a second opinion? I am so sorry you are going through this worry. Have you got a partner/husband around to support you?

[DaisyMOO]

Yes, it is MEN1 that she's talking about and I've been scaring myself shitless reading that site! I know it's really rare, and I don't have a family history, but the very fact that she's raised it as a possibility after all this time is really worrying me. I believe 10% of cases are a de novo mutation and I'm now freaking about the fact that I haven't had a period since my baby was born 17 months ago (although still breastfeeding on demand)

Not sure how I'm going to get an appt though as I've been waiting since last September for the one on Tuesday

[fairyjay]

DaisyMOO
That's awful for you - we would all assume the worst in your shoes. Your GP must get you sorted out for tests - or is an op the only way of diagnosis? You can't leave it for months though - the worry would send me mad!
And it's very probably all for nothing - fingers and toes crossed.

[Twiglett]

oh god Daisy .. that's awful .. as in awful practice from consultant (was it a consultant or a registrar)

I know it is impossible not to worry .. is there any way you can speak to someone more senior?

remember some doctors are just twats and don't actually know what they are talking about

[Twiglett]

whatever you need to shout loud for quicker diagnosis .. unfortunately in the NHS the more of a presence you make felt the quicker things happen

you cannot be left with this worry

but remember it is far more likely your initial diagnosis is right

[DimpledThighs]

I had a kind of simliar thing where I had a specialist hint at something in a letter. The letter came on a Saturday and it was a bank holiday mon and tues and so I couldn't speak to anyone about it.

THe best thing I did was call my GP on the Tuesday morning and went to see her. She knew a little about the condition but was more able to reassure me and undo all the bad work the consultant had done putting worries in my head. She was great. If you have a good relationship with your GP I would recommend this - you are not wasting their time your mental health is at stake.

Also: STAY AWAY FROM THE INTERNET! not mumsnet of course but DO NOT GOOGLE YOUR CONDITION* there are lots of scary and inaccurate things online and you are in no fit state to research it in this way (this is from someone who would leap out of bed at 4am to google something or not check her email for a week because she aws scared of the information on the computer.)

Please take care. Try and stay positive but I know how annoying that advice may seem in your current state.

best wishes.

[DaisyMOO]

Thanks everyone. I'm trying so hard just to put it to the back of my mind, but it's really hard My next appt came through this morning for the 12th June but I just can't cope until then. My dh is phoning the consultant for me as I am just too emotional and burst into tears at the slightest thing (like a picture of my children , crying as I type this) and I don't think I'd be able to take in whatever he said.

I will try and keep away from the researching it, but tbh I spent so long readiong last night I'm not sure there's anything else to find!

[DaisyMOO]

Oh yes, and it was a registrar who I saw, not the consultant who I've met in the past but he didn't mention the possibility of MEN at all. If I'd known it was a possibility I would have been pushing for the op (which is the only way to be sure) 2 1/2 years ago when I first found out about the high calcium

[tissy]

Aha! Registrar who had just done her exam, probably and knew all about the extremely rare condition, and felt she just had to impart her hard-earned knowledge to someone else!

[DaisyMOO]

I said to her, well it's very unlikely isn't it? To which she said, pretty unlikely, which just made me feel worse. I know it's all in your interpretation of 'very' and 'pretty' but the message I took home was that it was a distinct possibility. Being in my 20s, I got the impression that MEN was a more likely diagnosis that if I was older?

[Twiglett]

look there's a huge problem with Junior Doctors

they see symptoms ie like there's 4 legs, 2 ears and a broad back and say I know what that is its a zebra

its far more feckin' likely it'd be a horse now isn't it

registrars see zebras because they're far more interesting and unique

its still a HORSE though