Hi Bannanacake,
I always try to copies of test results. I was originally told I had igG paraproteins by a Registrar in Rheumatology. I spotted the mistake when I got copies of the lab reports. Not a great start to my MGUS journey. I am chasing up my April tests today!
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Hi. I have had MGUS confirmed this week. My GP suspected but referred me to a consultant who did lots of tests and is now going to monitor me every 6 months. Bit scary to read up on possible mylona to say the least. My question is whether anyone out there had a CT scan at this stage. The consultant says as I have no symptoms (night sweats, loss of weight or loss of appetite) he wouldnt do one. However, I’m told by a family member who is a haemotologist that in their hospital I’d be given a CT scan to check my lymph nodes. Any thoughts please? Thanks
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Dear @LizK
Thank you for posting and welcome to the forum. I do hope you find our forum community a great support.
Any scans requested for MGUS would generally be to review your bones to ensure there are no lesions related to pain, do you have any pain at the moment? Did the Haematology Consultant you saw examine you all? Scanning is often in relation to symptoms but it is reasonable to question this when you next see you Doctor.
I thought I would include some more information regarding MGUS that I hope will help:
Monoclonal gammopathy of undetermined significance (MGUS) | Blood Cancer UK
Here is our MGUS fact sheet: MGUS-monoclonal-gammopathy-of-undetermined-significance-fact-sheet-MGUS-0717.pdf (shopify.com)
If you would like to discuss this further please do call us: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma
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Hi @LizK a great big welcome and I am glad you have found us so quickly, I think you give a good example where different medical people and health authorities have different guidelines.
I have a different blood cancer and have never had a scan but I have heard of others on here that have.
How are you feeling emotionally about your diagnosis, my thoughts and emotions were all over the place when I was diagnosed, and are still on high alert 19yrs on.
The main thing is to really look after yourself and keep posting I look forward to hearing more about you.
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Thank you Gemma
I don’t have pain and the consultant’s nurse practitioner gave me a full exam before I saw them at my first visit. I suspect it’s a case of different consultants having their own way of working but I posted originally just to see what other people’s experience had been.
Thanks
Liz
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Thank you Erica. Yes, feel up and down now that the diagnosis is “official”. However, since my earlier post I’ve spoken again with my family expert and it appears I have had the appropriate CT scan in January for another of the cancer pathways my GP put me on. That scan result is all good so feel happier that I’ve had what I would have had scanned in a different area of the country!
I guess part of me wishes I was still in blissful ignorance but can’t turn back time so at least I’m being monitored.
Hope you keep well and thank you for your support.
Liz
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Hi @LizK. I’m glad your mind has been put at rest regarding your scan. Blissful ignorance would be great wouldn’t it! I’m glad you’ve found us - here every step of the way X
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Hi@LizK and welcome to the forum.You may have read some of my other posts but my experince was that I didnt have a scan .
A skeletal Xray was suggested by the lab after my blood test confirmed MGUS but the Haematologist didnt think it was necessary at that point.
My GP monitors the blood tests under guidance from the Haematologist and I am on 4 monthly Watch and Wait.
He also checks me for enlarged lymph glands and spleen 1/2 a year
Do you know the name of your MGUS ? mine is IgG kappa
I have an abnormal light chain .
Both are creeping up but no action needed yet thank goodness.
I know its a scary thought what it could lead to but the best thing is that you are being monitored .
I am glad to read that @GemmaBloodCancerUK has given you some advice with the leaflets etc and also www.myeloma.org.uk give good support and has a wealth of info on their site.
I hope all goes well for you with your other investigstions too .
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It seems as though MGUS, which I am new to, is dealt with differently depending on where you are. I was told I had it, from blood results, but have not been examined, not seen anyone since being told, had to chase up to find out what MGUS is and do not know what type I have or any details. I am trying to stay calm and wait for May blood test, when I hope to find out more. I wonder if they feel its too insignificant and feel it might be less stressful to say little.
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Hi @Zoom we have a factsheet on MGUS in case it’s ever useful - https://cdn.shopify.com/s/files/1/0196/7004/0676/files/MGUS-monoclonal-gammopathy-of-undetermined-significance-fact-sheet-MGUS-0717.pdf?v=1608655207 Our health info team are also in the process of reviewing and updating it. You may find it helps you formulate questions for your appointment in May. There’s a section called 'What tests will I need? In case it’s useful, a section of the factsheet which talks about appointments/check ups explains:
You’ll have follow-up appointments with your GP or at a
haematology (blood disorder) clinic at the hospital.
You can discuss with your doctor where you’d prefer to have
these appointments. This will also depend on your personal
circumstances and the level of paraprotein in your blood.
Once a diagnosis of MGUS is confirmed, and as long as you
remain well, your follow-up appointments will happen every
six months. Your doctor will check for any new symptoms,
such as unexplained bone pain, or feeling tired (which can be
caused by anaemia – a low level of red blood cells).
If everything has remained stable for some time, your tests
may happen less often.
If you ever want to talk things through with us, please don’t hesitate to give us a call on 0808 2080 888.
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Oh @Zoom the situation you are in must be so unsettling and isolating for you, especially when you are newly diagnosed.
I am glad you are part of our forum family.
@Alice_BloodCancerUK has given you so much good information.
Personally I think Covid times have meant that we all get far less face to face appointments.
I think when I was first diagnosed I just went numb and did not ask any questions and was also not told anything.
Still when I walk into a medical building my questions go out the window, so over the years I have learnt to write down all my questions and not leave till I am satisfied.
With phone consultations although I know the phone will ring it still means it gives me a shock and I go blank so again I write down all my questions and I do not let the call end till I am satisfied.
I have learnt to be ‘pleasantly assertive’.
The main thing is to look after yourself and be very kind to yourself
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Hi @LizK,
Welcome to the forum.
I think everyone with MGUS will have a different experience.
All my consultations with Haematology have been video or telephone. This was originally because of Covid and they have continued with this. This was originally every three months but has now stretched to four months. My levels of paraproteins have mostly been “too little to quantify” and therefore haematology have not done any CT or MRI scans or bone marrow biopsies. My blood tests have been relatively stable except in the last one the calcium levels slightly exceeded the upper limit. They proposed doing parathyroid hormine test in May, but fate has intervened and my GP did it this week because a Dexa Scan showed I have Osteoporosis. I have IgM kappa paraproteins. I think scans and bone marrow get done when the paraproteins get nearer the 10g/L or when one is very symptomatic-but I might be wrong on this. I also joined a research study in Oxford and had loads of blood tests and a CT scan. The CT was to check for enlarged lymph nodes and thankfully everything was ok.
Best wishes
Helen
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Hello all, just wanted to alert you to our new MGUS information, which can be downloaded/ordered for free, here - Monoclonal gammopathy of undetermined significance (MGUS) | Blood Cancer UK Shop
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Hi I have just been diagnosed and I am in complete shock. My GP was terrible and the NHS equally bad at showing any consideration to the fact a person is behind the diagnosis. For anyone that has been newly diagnosed, how long did you feel shock, anxiety and upset for ? I feel quite overwhelmed reading everything and having no professional to speak to.
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A great big welcome to our forum @E4-T I am not a medical person, but I am not surprised that you are in complete shock.
Have you got a nurse contact at all as they are often a good point of contact?
What is going to happen next with you?
I was given my news by a gynaecologist and he also said that he could not do any more for me. I thought I was not going to make it home and I got home and wrote my will and funeral music.
The gynaecologist meant that he could do no more on the gynae side, I was OK, and my symptoms were my blood cancer and for me to go to my GP for a referral to haematology.
I think it is natural to feel shock, anxiety and upset.
I was diagnosed with a different blood cancer and I remember it took me a good few weeks for me to start getting my head round it all.
I also actually found that counselling helped me.
You say you are reading everything, have you got some booklets or did you mean on the internet?
I found I could not take in written information.
I found something that said that my blood cancer had a 5-10yr prognosis, that was 19 yrs ago and here I am.
Have you any support from anyone?
If you would like to speak to someone the Blood Cancer UK support line is there for you on 0808 2080 888
Please be very kind and really look after yourself and please keep posting.
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Than you so much for replying so soon. I found out from a letter on my GP record from a consultant who was treating me for something else - it basically discharged me and said I had this. Then I phoned my GP practice who called me back. He had not read my letter so quickly did it on the phone and then said I’m would be sent for an another blood test and dialed off. That was it. The rest has been about researching on the internet for the last 24 hrs, crying and thinking I won’t live to see my children grow up. I feel like I’m having a bit of a meltdown. And I need to try to find someone to explain it to me in more detail- even though I’ve researched it I just feel I need to speak to someone of that makes sense. So just feeling a little lost in the system. I can’t speak to my family as they will worry too much but I am speaking to my husband who I think is as shocked as I am.
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Hi @E4-T and welcome to the forum.
I can imagine you are in complete shock and we all understand that feeling of being overwhelmed and our emotions all over the place.
I’m so sorry that you received the news in the way you did. That must have been very hard.
@Erica has given good advice. I would really recommend you giving the support line a call. They will be able to talk things through and advise you on next steps.
We are all here to support you so please keep posting. Will check in tomorrow to
See how you are doing X
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Hi, I was diagnosed with monoclonal gammopathy of unknown significance (MGUS) about 6 months ago. It was found as an incidental finding when I was in A&E. I am seeing my haematologist again next month and he said he might do a bone marrow biopsy. My recent blood tests say that I have IGG kappa but it is my IGM paraprotein that is elevated at 2.74. I don’t know if I have IGM monoclonal gammopathy of unknown significance (MGUS) or IGG monoclonal gammopathy of unknown significance (MGUS) and i have searched and searched and read so much. I get so confused with the various tests and I don’t understand much yet. I am grateful to have found this website and I am trying not to be too anxious and trust that I will find help for whatever faces me. I absolutely love the monoclonal gammopathy of unknown significance (MGUS) diary which I printed and filled out. It makes me feel somewhat in control and safe.
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Hi @Paulette a great big welcome to our forum and your story has slight similarities to @E4-T 's .
You have both entered lands of medical speak which definitely is another language.
I will tell you both a secret I was diagnosed 19 yrs ago and I don’t either understand most of it either.
I think being able to read our medical correspondence on line definitely can be confusing and anxiety making.
Yep, keeping a diary is definitely a good idea and reading back the notes I kept really shows me how ill and fatigued I felt and how raw my emotions were.
Please do ring the Blood Cancer UK support line if you would like to speak to someone on 0808 2080 888 and we are here for you.
You have found us now so perhaps personally I would say try to stop searching the internet @E4-T there is some unreliable information out there.
I thought I would never see my son get married either and guess what 19 yrs later and he still has not got married!!!
Look after yourselves and please do keep posting and don’t hesitate to contact your medical teams with your questions.
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Hi @Paulette and a big welcome to the forum.
I seems so many of us on the forum have been diagnosed when having an appointment for something else. It must be a complete shock.
Medical language can be
So overwhelming can’t it! Your diary sounds like a brilliant idea and having some control over what you can - when everything else is out of your control a lot of the time on this journey - is a really positive thing.
Please keep posting. I’m hoping the forum really supports you as much as you have shown the value of supporting others X
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