[boston99Participant]

Hi
I’m female, 52 and fairly fit and active. I recently had some blood tests done as i have been experiencing constant stiffness/dull aching in my lower back (since last October). This is the only symptom I can think of. I rang the GP and requested the CAT125 test in particular as I was concerned about my ovaries. I must add that I do suffer with health anxiety so I was looking for reassurance regarding this symptom. I should also add that I’ve had the following tests in the last couple of years as I initially had a dull ache below my ribs on the left side but this has since cleared up;

Ultrasound of abdomen; no abnormalities
CT scan of abdomen; clear
Colonoscopy: small polyp removed
MRI of abdomen; clear
X-ray of lumbar spine (only finding was hemi-lumbarisation in sacrum);

The GP arranged for the CA125 test plus a few others and I got a letter about a week later requesting that I get one of the tests repeated in 2 months.
When I rang the surgery the Receptionist went through the tests I had done;
Full Blood Count: Normal
Liver FT: Normal
2 x ‘Inflammation tests’: Both normal
ICF?: Normal
Bone Profile: Normal
CA125: Satisfactory
Immuno-Electrophoresis Serum: She just told me this is the one to be repeated!

The receptionist didn’t know what it was for so I did my own googling and of course got worked up straight away! Myeloma seemed to be the only reason for doing this test and I couldn’t find any info that would explain why the test needs repeating, other than assuming there is some abnormality.

Therefore I have spent the last few days worrying that I have this blood cancer and feeling in limbo for the next 6 weeks until I get the test repeated.
Does anyone have any experience of this happening – eg. can the levels in the test fluctuate? can there be any other innocent explanation for the levels being abnormal? Should I ask the surgery to repeat the test sooner?

Perhaps I should ring the surgery and ask this – I’m just not sure what to ask, how to put it, and it’s difficult to see the doctor face to face at the moment.
We have just found out that we are to be grandparents for the first time and I’m so angry at myself for allowing this situation to over-shadow this beautiful moment.

Thanks

[boston99Participant]

I should have included that I was also diagnosed with Osteporosis a couple of years ago so I have had 2 DEXA scans in the last 4 years too.

[susantrParticipant]

Hello Boston99

The SEP will show if you have an elevated m-spike, paraprotein or monoclonal protein. A normal m-spike is zero. Anything over zero is abnormal, however this doesn’t necessarily mean that you have Myeloma. Some people have a very small paraprotein, which is totally benign and this is termed MGUS – monoclonal gammopathy of undetermined significance. People can have this for many many years without any problem and it may never progress. However, this can also progress to smouldering Myeloma, which can then progress to Myeloma. It may be that you have a very small paraprotein which needs monitoring 1-2 times a year. No treatment is required for MGUS. Hope this helps. Try not to worry.

[boston99Participant]

Thanks for replying Susan.

So does the fact that I am getting this test repeated indicate that the result must be abnormal and there’s no possibility that a second test would have a completely normal “zero” result?

[mulberryParticipant]

Hi Boston99
It’s not known what percentage of the population have a low level of monoclonal proteins (MGUS), a study is being done in Iceland to try to find the answer. I am not a doctor, but suspect if your electrophoresis test had suggested a significant monoclonal spike, you would have immediately been referred to a haematologist under the 2 week wait cancer screening protocol. This is what happened to me when mine was found after a series of tests to find out why I was anaemic. By no means all people who have monoclonal proteins, even though they are ‘abnormal’, need treatment,for people of your age only 1% a year progress to having full blown myeloma. I hope you are worrying unnecessarily!

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