Hello all.
I live in the United States but I found your website and I wanted to get some more information and hopefully some support I have chronic fatigue symptom and we can immune system doctor wanna do some bloodwork on me found out somethings and I really never even heard of it I have high protein, M proteins in my blood and urine called MGUS. The numbers are rather high but I’ve been to three different hematologist to get advice and the only thing they tell me is to get blood work every three months and watch it, I’m asking them how long are we gonna wait to do some other kind of testing? Are we still going to just watch it forever? I’m very scared and concerned as I don’t want to get boys cancer I’m not getting good answers and I really don’t know where to turn to Him I supposed to insist on having a bone biopsy to check it out. I’m really scared of having a bone biopsy because I’ve heard terrible stories so I wanted to reach out and talk to some other members of this community. I appreciate your being here, and I hope I can get some support and some answers . I have a lot of things are you also and depression so I’m thinking I hope I don’t get this and I hope if I find out I do have it it’s not too late to get treatment. That’s why I don’t like the doctors being so dismissive i am not sure what to do.
I am a a woman 63-years old. Thanks all
Hi @Goldengirl
I was also diagnosed with MGUS last year. My doc found it while doing blood tests for other things. I can hear how anxious you are but I’ve been told that many people live with MGUS without symptoms or treatment. The watch and wait is a monitoring process that will flag up any progression. I was very anxious and frightened to begin with and still am as each blood result comes but I’m trying to see it as just another screening process like breast cancer and bowel cancer we do in the UK.
I don’t think you will need a biopsy until /if you show further symptoms, but not sure how it would work over there.
This is a great place to say how you feel and I’m sure you will get other replies. This website had some good information and Myeloma UK also have a info sheet about MGUS.
Sending hugs.
Alex
Hi A great big welcome from the UK @Goldengirl
Firstly medical people approach the diagnosis and treatment (or not) of all conditions very differently in different countries.
I was a 53yr old woman when I was diagnosed.
I was diagnosed 19 yrs ago with another blood cancer just before Christmas and my Christmas card crossed with one from a friend in LA and she had just been diagnosed with the same blood cancer as me. She was immediately treated and I was put on ‘Watch and wait’ (active monitoring), which I am still on today, I feel a very lucky girl, and we are both still exchanging cards and now have a special bond.
I have never had a bone marrow biopsy.
@AllyBally has given you a brilliant response.
Perhaps it might not be a good idea to search the internet, tempting as it is. Not all information is reliable and can be scary.
I have learnt to be ‘pleasantly assertive’ and write down everything I want to ask before appointments and to make sure I cover everything I want to say and do not feel dismissed at appointments.
Really look after yourself and be very kind to yourself, I have found since diagnosis there is a lot of waiting on medical things.
Hi @Goldengirl, thank you for taking the time to share your story. It’s understandable to be feeling concerned, especially when you don’t have all of the information and support that you need.
Do you have a regular primary care physician, or a haematologist overseeing your care, that you might be able to speak with to share your feelings and questions? I’m sure others on here can share their experience of MGUS, but we’d also encourage you to reach out to a health professional who’ll be able to give you information relevant to your individual circumstances, too. It’s so normal to need support at times like these- we all do, and you’re not alone.
Just in case it’s useful to know a bit more about MGUS, I’ve pasted the links that Alex had mentioned here-
Monoclonal gammopathy of undetermined significance (MGUS) | Blood Cancer UK.
MGUS infosheet (Myeloma UK).
As it explains here, “Monoclonal Gammopathy of Undetermined Significance, or ‘MGUS’, is a condition where there is an abnormal protein in the blood.
It is not a cancer.”. It generally doesn’t cause symptoms or need treatment, and it’s normal for people to be monitored, though I appreciate this can be anxiety-provoking.
I do hope this is somewhat useful. Take good care of yourself, and keep reaching out for support.
Best wishes,
Tanya.