[kashmir74Participant]

Hi there.
Last June I underwent blood tests due to abnormal bruising and bleeding. A couple of results came back abnormal (light chains and one other?) and I had to have a urine test for Bence-Jones proteins which came back positive. I was told no action was required other than to have the tests repeated in six months, and I’m now awaiting results of these. I’m so nervous. I haven’t been well in recent months – I ache all over my body like I’m coming down with flu, and I’ve recently lost control of my bladder twice, which has been extremely distressing. I’m a 46 year old woman in otherwise good health. I’ve been reading about myeloma symptoms recently and have scared myself a little. Am I over-reacting?

Many thanks for listening,
Kash x

[mulberryParticipant]

Hi Kash
It is perfectly reasonable for you to feel highly anxious waiting for your results. I think everyone on ‘watch and wait’ who has MGUS (the precursor pre cancerous state of myeloma) or smoldering myeloma (low level disease that doesn’t benefit from immediate treatment) would be very nervous. It seems to be part and parcel of myeloma, with everyone, whether with active disease or not, needing regular testing, always heightening patient anxiety.

If you were diagnosed with MGUS (monoclonal gammopathy of unknown significance) your risk of it developing into myeloma is only 1% a year (5% for older people), so for most people it just remains as an anomaly that doesn’t do them any harm. Fingers crossed for you.

Your symptoms don’t immediately jump out as those commonly reported by myeloma patients, although bladder incontinence is reported in the literature, but it is an odd disease which can affect many organs and body processes and I would tell your haematology team about your bladder issues (& aches). As you said it’s odd for someone of your age. Myeloma tends to be quite a slow disease, a marathon for patients rather than a sprint, so 3-6 monthly testing should pick the disease up before much damage is done.

I’ve found that over time it does get easier to manage the anxiety that goes with regular testing.
Hope this is helpful

[kashmir74Participant]

Mulberry, thank you so much for your reply – it is very helpful. I haven’t been diagnosed with anything yet – my Haematologist thinks that the abnormalities which showed up 6 months previously are probably due to inflammation and should be back to normal in this round of tests. Does this sound reasonable?

[mulberryParticipant]

My understanding is that Bence Jones urine test is one of the bench mark tests for myeloma or possibly other blood cancers, so it’s presence is very suspicious.
Personally I would ask my GP for a referral to the regional hospital with a haemo-oncologist who sees myeloma patients routinely, as a second opinion. On hospital websites you can see details of the drs and consultants which give their special interests. I have found with myeloma that you have to act as your own advocate and that it really helps to find a consultant who you can trust.
Having said that, people can have low levels of myeloma cells (as I mentioned above) which their own immune systems appear to deal with (MGUS and Smouldering Myeloma). However as you have some worrying symptoms I would push for retesting, including a bone marrow biopsy, which is the definitive test. It’s painful but will give answer.
I hope you get some answers soon.

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