I have just had a call from the doctor regarding my mum and I am terrified.
She was diagnosed with Monoclonal gammopathy of unknown significance (MGUS) back in 2017. The hematologist said the chances of it developing into something nasty within 10 years were fairly low. Its not really been monitored. My mum has always had a bad back (20 years +) so doctor has gone an x-ray and that came back clear but blood test came back as abnormal. The GP has said she is referring my mum back to hematology on the two week pathway.
I feel sick with worry.
I don’t understand the numbers can anyone please help me understand:
I am so upset I can barely breathe. Am I going to lose my mum…she is all I have.
She is 79 but not at all frail … in fact fitter than me!! I don’t know what her previous results were. But I am guessing from the GP that they are really bad.
Oh @Misscleo I can really feel how terrified you are from your post, but welcome and I hope that you find us a supportive forum.
Perhaps when you are terrified you always fear the worst scenario, I know I do.
It sounds to me that your feelings are very natural, but you have had the courage to actually voice them, thank you.
I bet quite a lot of us, in all different circumstances have felt as you do now, I know I have.
However we cannot answer your questions, only your mum’s haematologist might be able to as they will have all your mum’s medical history.
Perhaps now is your opportunity to sit down with your mum and write down all the questions you both want to ask at that appointment.
No questions are out of bounds perhaps ask all your fears and practicalities to.
You and your mum are probably going to be anxious about the same things.
If you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
Yes, you really show that medical people speak a different language so if you do not understand what they say ask them to put into simple English for you.
Perhaps be pleasantly assertive and not leave the room till you are satisfied you understand.
Be very kind to yourselves and look after yourselves and please do let us know how you are getting on.
I am so sorry that you are so worried about your Mum and it is totally understandable that you are concerned. I do hope you have friends or family around you to support you?
Whilst we cannot interpret the blood results, it is clear from your post that the GP has informed you and your Mum that the levels are raised and that some specialist advice is required. The blood results and any other investigations will be considered in context for the individual patient by a Haematologist. It is good to hear that the X-ray was normal. Do you know if your Mum had ay other blood tests to check her kidney function and whether they were normal?
I have attached some really helpful resources that can help you understand the tests and the importance of escalation for Monoclonal gammopathy of unknown significance (MGUS) patients. I understand the fear around this situation for you, it is good that the referral is already done and that your Mum is fit. As @Erica mentioned, we are here if you would like to talk. I would be reassured that you Mum has been referred to the right team for their specialist opinion in a relatively short time scale.