I have recently been diagnosed with MGUS

Active Monitoring (Watch and Wait)
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Hi,

I’ve just been dianosed with Monoclonal gammopathy of unknown significance ('MGUS'). I did some research which says the chances of it developing into cancer are low. Even so I’m abit worried. I have a CT scan soon and then another blood test but don’t know when the blood test will be. Apparently the M Protien level is about 7g which I was told is low risk. I don’t know what to make of it all.

My initial feelings are to carry on as normal, I have applied for promotion at work so I’m thinking just focus on that, and in terms of the scan and blood test to just deal with it at the time??

If everything shows as ok on the scan and the blood test shows no change then I will just do the blood tests when I’m asked to but if something changes or progresses than I guess I will have to deal with it a go through treatment??

Don’t know If I should feel upset, worried, concerned?? Just confused a little. I’ve told my wife who read about Monoclonal gammopathy of unknown significance ('MGUS'). Don’t know how she feels, shes carrying on as normal.

What are your thoughts on all of this??

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Hi @MrGSP1986

Welcome to the forum. I’m sure you will find it a very supportive group.

Your diagnosis is not something I’m familiar with but I’m sure that the @BloodCancerUK-SupportTeam and @BloodCancerUK_Nurses will be able to answer questions that you might have at this stage.

Hope thats helpful and take care

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Hello @MrGSP1986

Thank you for taking time to send in your post to the forum

I’m sorry to learn about your diagnosis - my heart goes out to you

I can see @DuncanB has responded and asked one of our nurses to contact you

Please do feel free to let us know how you get on

Take good care of yourself

Kind regards

Mike

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Hello there @MrGSP1986, welcome to the forum at this confusing time. I’m glad you found us here and I hope you’ll come to feel less unsure about that diagnosis. I’d say from my non-medical perspective that no wonder it’s been confusing, any diagnosis out of the blue would likely be a shock. Not knowing what to make of it is to be expected right now.

We forum members can’t offer medical advice, and I was diagnosed with a different blood disorder called Polycythaemia vera ('PV'), so perhaps you’d like to read the great research from Blood Cancer UK about Monoclonal gammopathy of unknown significance ('MGUS'): MGUS (monoclonal gammopathy of undetermined significance) | Blood Cancer UK

One part of the above research I think could be really comforting; “In most cases, Monoclonal gammopathy of unknown significance ('MGUS') has no effect on how you feel physically. You are unlikely to have any symptoms and won’t need treatment, but you will have regular check-ups to monitor the Monoclonal gammopathy of unknown significance ('MGUS').”

One thing I would advise is to keep note of what comes up for you, the sorts of questions about Monoclonal gammopathy of unknown significance ('MGUS') that pop up in the middle of the night and other inopportune moments, as these can help when speaking with your specialists. Also note any symptoms, big or small, as these can help specialists understand how your diagnosis is showing up in your life, if at all.

From what I’ve read others around the forum share about being diagnosed with Monoclonal gammopathy of unknown significance ('MGUS'), it sounds like it can be lived with, but that having a disorder sort of lurking in the background can affect mental health. As someone living with a chronic type of blood disorder, remembering that it will likely progress only slowly, if at all, might be of comfort to you too. Initially after my on diagnosis I felt a lot of anxiety about its risks and how treatment could affect me, but a few years on I am more at ease with the chronic nature of it all. Believe me, I never would have thought I could be this relaxed about this!

If you’d like to call the lovely specialist Blood Cancer UK nurses to talk through your diagnosis, their free number is 0808 2080 888. You might also like to use the search box at the top to find other forum members who have posted about Monoclonal gammopathy of unknown significance ('MGUS'), or the Related Topics below.

Hope that helps a little @MrGSP1986, do let us know how you get on.

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Hello @MrGSP1986
Sorry to hear of your diagnosis. I had a myeloma diagnosis (without any previous Monoclonal gammopathy of unknown significance ('MGUS') diagnosis) end of last year so I understand how confusing this all can be.
If you want any advice (and feel free to disregard it if you don’t). There’s no right or wrong way to feel about this, feel what you feel - also accept that the way you feel can change at any moment. I went from denial to despair in a heartbeat before finally getting to a place of acceptance. So if you can carry on as normal, do it, go get that promotion! Treat it as a data point and not a time-bomb, because it may never develop. If it does develop you’ll be in a whirlwind of appointments, tests and treatment cycles and your normal will become different.
I’m sure you’ve heard already how treatments have advanced and there are so many treatments available, so please don’t assume the worst even if it does develop.

You’ve come to a great place for support, this forum is awesome, everyone is so caring and plus unlike a lot of forums you get the brilliant forum volunteers providing resources and nurses advice too.

Take great care of yourself xx

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Well @Spangleystar :glowing_star: could not have put it better! I echo in her footsteps, I didn’t have Monoclonal gammopathy of unknown significance ('Monoclonal gammopathy of unknown significance ('Monoclonal gammopathy of unknown significance ('Monoclonal gammopathy of unknown significance ('MGUS')')')'), MM came right out of the blue for me from a routine blood test, slight difference was, as soon as GP mentioned paraprotein, I instantly knew what they where looking for as my dad had Monoclonal gammopathy of unknown significance ('MGUS'), and as his career (for heart failure not related to Monoclonal gammopathy of unknown significance ('MGUS')) and I’d read up on it all, as they initially thought it was mm, dads level was extremely low, never even monitored, was just a number on his file, never bothered him, although I was always vigilant, so I hope the very same scenario for you, honestly it doesn’t always progress, :flexed_biceps: live your life, make your plans, it might never become an issue , good luck x

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Hello @MrGSP1986

Welcome to our forum and thank you for your post.

We are sorry to hear about your Monoclonal gammopathy of unknown significance ('MGUS') diagnosis and hope that you are doing well. We can imagine receiving this news can be quite daunting. Please know that you can call us on 0808 2080 888 if you would like to talk anything through with our support team.

I can see that others have commented with really great replies and shared useful information as well as their own experiences.

The majority of people with Monoclonal gammopathy of unknown significance ('MGUS') do not usually have symptoms and can carry on as normal with day to day activities. Should you begin to feel unwell or notice any new, worsening or persistent symptoms do let your doctor know as soon as you can. In case it is useful, we have a page on What is MGUS | Blood Cancer UK and MGUS and blood cancer | Blood Cancer UK which includes further information about different types of Monoclonal gammopathy of unknown significance ('MGUS'), risk groups, signs and symptoms to look out.

We would advise speaking to the team that looks after your Monoclonal gammopathy of unknown significance ('MGUS') - usually either the GP or haematology team about what to expect. Monoclonal gammopathy of unknown significance ('MGUS') is different for each person with the condition and frequency of blood tests and reviews can depend on several factors such as risk group, age and blood results.

In case it is useful, our colleagues at Myeloma UK have an Monoclonal gammopathy of unknown significance ('MGUS') information sheet - MGUS Infosheet

In addition to this, we also have a page on MGUS diagnosis and monitoring | Blood Cancer UK which talks through the different diagnostic tests and what will happen at check-ups.

We have an Monoclonal gammopathy of unknown significance ('MGUS') booklet that may be useful too and can be downloaded, or you can order a hard copy to your house for free - Monoclonal gammopathy of undetermined significance (MGUS) | Blood Cancer UK Shop.

Do take care & warm wishes,

Emma (support services nurse)

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@DuncanB @Byrnebaby @GenesisDevice @Spangleystar Thank you all for your kind responses. I will be going for a scan tomorrow, and when I get the results I will share with you, same for the blood test which I think is in May.

Thanks again!!

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We’re all rooting for you @MrGSP1986

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I have had Monoclonal gammopathy of unknown significance ('MGUS') for 10 years, and it has just progressed to Lymphoma.

In my experience, there is a significant difference between IgG Monoclonal gammopathy of unknown significance ('MGUS') and IgM Monoclonal gammopathy of unknown significance ('MGUS') outcomes.

So, it is worth checking which you have.

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@Malcolm I’ve got IGM Monoclonal gammopathy of unknown significance ('MGUS'). Ive decided im not going to worry about what may or may not happen. I will live life and enjoy it and wait for scan and blood test results and act accordingly.

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Hello there @Malcolm, welcome to the forum to you. Thank you for becoming a member, I think it can be really helpful to hear from folks who are years beyond diagnosis like you with Monoclonal gammopathy of unknown significance ('MGUS').

I’m very sorry to read of your lymphoma diagnosis after living with Monoclonal gammopathy of unknown significance ('MGUS') for so long. May I ask how that has been, having it progress? I live with a slight potential for my diagnosis of Polycythaemia vera ('PV') to transform, but didn’t know Monoclonal gammopathy of unknown significance ('MGUS') could progress to lymphoma and looked around the forum a little and found this that may be of interest: MGUS and blood cancer | Blood Cancer UK

I wouldn’t like to guess which type of lymphoma you have but perhaps you’ll likely find the Blood Cancer UK information about it here: Lymphoma - what is it, symptoms and treatment | Blood Cancer UK

If you’d like to read more from other forum members sharing about your type of lymphoma then the search box at the top or Related Topics below are great places to start. I’m sure you’ll find others who have shared how it is for them, and I hope that is helpful to you.

And like I’d suggest to other new forum members who have been recently diagnosed, if talking over anything with the lovely specialist Blood Cancer UK nurses would help, their free number is 0808 2080 888. They really know their stuff.

Do please let us know how you get on @Malcolm.

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@MrGSP1986 delighted to hear that you’re planning to live life to the full, we do want to hear from you when you get that promotion :crossed_fingers::crossed_fingers::crossed_fingers:

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