Yesterday I was given good news that I was no longer on 2week cancer pathway as 2endoscopies and CT scan had not shown evidence of cancer although other conditions were evident.
Then the nurse said however we have found abnormalities in your blood tests. I was told not to Google the condition which she said was monoclonal gammopathy of unknown significance (MGUS) and I was being referred to a haematologist. I wasn’t told when that might happen. I’m in shock . I’m exhausted mentally from the speed of the numerous investigations and now after what seems just a short breath this new diagnosis has been given. I don’t know what to expect from haematology appointment or when it will be.
A great big welcome @Pebbles31 you are now part of our forum and I hope you are following your nurses advice and not Googling!!!
I believe the 2 week cancer pathway is brilliant, but as you say you are in shock and suddenly events and tests are happening so quickly you just cannot keep up.
You must be exhausted mentally, physically, emotionally and practically and then suddenly you fall off the end of the conveyor belt into shocked limbo.
Just take this time to try and get your head round things.
I thought I was the only person in the world when I was diagnosed.
You will find others on here with your diagnosis
Perhaps start writing down questions for the haematology appointment, whenever that may be.
I attach some information that might help you
Just diagnosed with blood cancer: now what? | Blood Cancer UK
The main thing is that you really look after and be kind to yourself and please keep posting
Thank you so much for your kind response and for managing to express the thoughts going round and round in my head which I am feeling so difficult to articulate.
Just give yourself time you have had so much going on and a great big shock @Pebbles31 to process. Be ever so kind to yourself.
Welcome to the Forum. I am so glad you found us, and took the time to post about your experiences and new diagnosis.
I’m sorry to read that you have had to undergo so many investigations, and no time to process things that have been said to you, it’s completely understandable that you are in shock.
Take some time out for yourself today and over the weekend, do somethings that you enjoy and limit the time you give to thinking about the last few days.
You’re appointment with a Haematologist varies from hospital to hospital, so it could be in a week, it could be a month. During that appointment, they should discuss the blood tests you have had and what they mean in terms of a diagnosis; they should tell you which type of monoclonal gammopathy of unknown significance (MGUS) you have, based on the different paraprotein levels. They will discuss what the usual monitoring pathway is for that hospital, as some hospitals monitor a patient’s bloods and some refer the patient back to the GP, for the GP to monitor blood tests and tell them the frequency of blood tests. Some patient’s have 3 monthly blood tests, some have 6 monthly and others it may be yearly blood tests - this can change over time, to be less or more often based on how stable your counts are.
I know the nurse told you not to google anything, which is good advice, but I would suggest having a read through our website page, if you haven’t already: UnderstandingMGUS
And keep posting on our Forum if you have other questions, or call our Supportline if you need to talk to someone about how you are feeling.
Best wishes, Heidi.