Hi my name is Sue, I am 66 and was diagnosed with Monoclonal gammopathy of unknown significance (MGUS) 15 months ago. I have not had any blood tests or any contact with doctors since. Is this ok.
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Good morning @Sussanah
Thank your for your post and welcome to the forum.
We are sorry to hear about your diagnosis of Monoclonal gammopathy of unknown significance (MGUS).
Could we ask if you are under haematology for this or if this is managed by your GP?
It may be helpful to get back in touch with your healthcare provider to enquire more about this.
Usually patients would have a follow up and this would be at regular intervals determined by the team who are managing this.
For example, if this was diagnosed at your GP practice, we would then expect some follow up bloods in around 3-6 months and then repeat of these again, in another 3-6 months and if there are no issues and you are feeling well, this may become a bi-annual or annual blood test.
For further information on this, please see our page MGUS diagnosis and monitoring | Blood Cancer UK where you can also order a booklet, available for free delivery or download.
In case it is useful, our colleagues at Myeloma UK also have a page on this MGUS - Myeloma UK which again states ‘Monoclonal gammopathy of unknown significance (MGUS) patients are usually checked every 3-4 months for the first year following diagnosis. The checks can then be reduced to every 6-12 months as long as no symptoms develop.
You may be monitored by a haematologist, a specialist nurse or by your GP.’
If you need further support, please get in touch on our helpline on 0808 2080 888.
Take care and warm wishes,
Emma (support services nurse)
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I was sent to haematologist by GP he said my numbers were low so GP would monitor me, I got letter to say my surgery is not funded for elecrophoresis test, even though they tested me originally. I have recently contacted PALS and they have said someone will contact me. Not heard anything yet.So over a year since diagnosis and no tests.
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Hi Sue
I was diagnosed with Monoclonal gammopathy of unknown significance (MGUS) in 2014 when I was 53. My paraproteins were at 11 and my GP referred me to Haematology immediately. I had the full range of blood tests, skeletal x-rays and a bone marrow biopsy. I was told that I was Monoclonal gammopathy of unknown significance (MGUS)/borderline myeloma as my bmb came back at 8% and it needs to be over 10% to be classed as Myeloma. I continued to be monitored by Haematologist with blood tests every 3 months to check the paraproteins and my light chains. In 2017 I had another bone marrow biopsy which confirmed that I now had Smouldering Myeloma. I am still at this stage. It is important that you are monitored as things can change. You should at least be having 6 monthly blood tests I would have thought. I was also appointed a Clinical nurse specialist who I could phone / email if I ever had any queries. I hope you get some help and some answers.
Yvonne xx
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Dear @Sussanah
I am sorry to hear you have not received any follow up since you were diagnosed with Monoclonal gammopathy of unknown significance (MGUS) 15 months ago. Like my colleague Emma has already said, there should be systems in place to ensure that your bloods are checked. Did your haematologist say how often he would recommended your bloods are monitored? Have you been able to get back in touch with the haematology team to let them know that the GP is refusing to monitor them?
As well as contacting PALS, I would also suggest complaining directly to your integrated health board NHS England » Contact your local integrated care board (ICB)
I would also like to highlight your experience to our policy team. I am going to send you a private message to get a little bit more information if that’s ok?
Kind regards
Fiona (support services nurse)
Thanks for your info. My levels were only ‘3 ‘ in June 2024 at my diagnosis. I have not been tested since.
What has suddenly made me concerned is my brother has been diagnosed with prostate cancer. I read it could be connected to Monoclonal gammopathy of unknown significance (MGUS). He is not aware if he has Monoclonal gammopathy of unknown significance (MGUS), he will enquire at his next appointment. My mum was also told in 2019 that she had had a problem with a protein in her blood since 2011 she didn’t know. She passed away in 2020 from lung cancer so I can’t check anything. I think Monoclonal gammopathy of unknown significance (MGUS) is hereditary. As I said my levels were low and I was told not too worry about it. On my mind now till I can get another test and hopefully nothing has changed.
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