Newly diagnosed with MGUS

After several weeks of tests due to raised paraproteins I have eventually been diagnosed with MGUS.

The consultant said due to my age and the fact that my igG lambda levels are higher than he expected to be benign I’m going to be closely monitored. But rather than feeling I dodged the bullet I’m now worrying about it developing into myeloma.

I mean I have absolutely no luck so should this be any different!!

I know logically that most people live with MGUS for many many years without any changes but I’m finding hard not to think it’s waiting for the inevitable.

Anyway I’m just feeling a bit lost and emotional about the whole rollercoaster of the last month and needed to get it out hopefully where someone may understand and be able to give me a reality check.

Thanks in advance x

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Hi @Clairelou, a very warm welcome to our community forum. I am not going to give you a reality check because, personally, I think all the thoughts and feelings you are having are completely natural and exactly what I had at diagnosis. I remember coming home and writing my will and funeral music. You have had a tremendous shock, hence the rollercoaster. It is not uncommon to be closely monitored, it is commonly called ‘watch and wait’ or ‘active monitoring’.
We are here to support you and you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at support@bloodcancer.org.uk if you need to talk to someone.
Please keep posting and be kind to yourself.

Welcome to the forum @Clairelou I’m glad you found it. I’m so sorry to hear how worried you’re feeling since your diagnosis of MGUS. It’s totally understandable that you’re feeling emotional at the moment, I imagine it’s a lot to process.

You might have already read through it but here is our information on MGUS and we also have a downloadable fact sheet here. It talks through generally, what MGUS is and the sorts of things to look out for, as well as what happens at appointments.
@Clairelou if you want to chat this through with us over the phone, at any point, please do give us a call on 0808 2080 888. It’s free and confidential.

Really glad you found this forum and I do hope it can offer some support to you at this time.
How are you feeling today?

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Thankyou Erica and Alice for your kind responses. It is comforting to know I’m not alone in my feelings

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There are a few people with an MGUS diagnosis on this forum so I hope they will see your post and perhaps share their experiences. (You can search for/join in the past MGUS conversations using the search tool at the top).
We’re only a phone call away if you want to talk it through!

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Hi @Clairelou. I missed this post so just wanted to welcome you. The early days after the initial diagnosis can just be overwhelming. I just wondered how you were doing?

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Hi’ and welcome Clairelou, like yourself I too have a diagnosis of IgG lambda paraprotein and remain on Watch and Wait. I regularly read through posts on this support group as it allows me to not feel quite so isolated even though I find it difficult to openly share and participate in posts being a very private individual. I can relate to what you have said and I’m glad that you have found Blood Cancer UK and its Forum.

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Hi @Shaka. I hope you are well. Sometimes just reading about others experiences is enough to help isn’t it. I completely understand how difficult it can be to share. That’s the good thing about this forum; you can share as little or as much as you want to. I hope you are well? I know I’ve felt more isolated at times during lockdown X

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Welcome @Clairelou. I can only imagine how you must feel. You must be very anxious and medical staff whilst well meaning can’t always empathise with how you are feeling. Do check in here anytime that you need to talk. I’ve got Myeloma but I didn’t know about it until it was quite far progressed as I didn’t realise that I had the symptoms, there was always another explanation for what I experienced. I’d never heard of Myeloma either when a doctor told me that I’d got it so had to walk through a fog of ignorance before my life settled down. I do hope there’s a positive outcome to all of this for you but in any case there are lots of people here to offload how you are feeling in a safe place. Your medical team will be able to answer any technical questions, but we can give you some personal perspective. Take care and try not to worry too much.

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