Recent urine and blood tests resulting in urgent haematology referral

I have recently had urine tests which showed Monoclonal protein immunotyped as Free Kappa and Bence Jones protein which were followed up with bloods which were found to be abnormal as listed below so I’ve been referred on a cancer pathway to haematology and they rang me today 1 hr after receiving the referral which is brilliant but also worrying and I’m seeing haematology next Wednesday. My bloods were as follows

SERUM FREE LIGHT CHAINS
Serum kappa light chain level 90.15 mg/L [11.3 - 27.6]; Above high reference limit
Serum lambda light chain level 9.47 mg/L [10.3 - 24.4]; Below low reference limit
Serum kappa:lambda light chain ratio 9.52 ratio [0.99 - 1.8]; Above high reference limit

Monoclonal protein immunotyped as IgG Kappa

Serum protein electrophoresis
Immunoglobulin G level 9.14 g/L [6.0 - 16.0]
Immunoglobulin A level 0.97 g/L [0.8 - 4.0]
Immunoglobulin M level 0.56 g/L [0.5 - 2.0]
Serum protein electrophoresis Monoclonal band/s in Gamma detected

SERUM PARAPROTEIN QUANTITATION
PARAPROTEIN LEVEL 1
Unable to quantify paraprotein due to high
background polyclonality

Can anyone shed any light on what this might mean and what tests come next with the hospital?

Thanks

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Hi @Katiep, welcome to the Forum, though I’m sorry about the worries that bring you here.

The gap between getting test results and seeing a specialist is often difficult, and it’s understandable that it feels unsettling even as you recognise the speed is a positive thing in some ways.

I’m going to tag our Blood Cancer UK nurses - @BloodCancerUK_Nurses - because the questions you’re asking about what these markers might indicate, and what investigations are likely to follow, really need someone with clinical knowledge to answer properly. They’re much better placed than I am to give you any useful context, though of course they won’t be able to speak to your specific case in as much detail as your own healthcare specialists will.

What I can say is that your Wednesday appointment is the most important next step right now, and your haematology team will be able to explain your results and what they’re looking for in detail. It might be worth writing your questions down before you go, including the ones you’ve raised here, so nothing gets lost in the moment.

Our Support Line (which is staffed by the wonderful nurses) is there if you need someone to talk to before then: 0808 2080 888 (option 1) or support@bloodcancer.org.uk.

Do let us know how you get on, and take care,

Ceri - Blood Cancer UK Support Services

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Hello @Katiep

Welcome to our forum and thank you for your post.

We are sorry to hear that you are going through an understandably worrying time and please know that if you would like to talk through any of this with one of our support services nurses you can get in touch on 0808 2080 888.

We are unable to give individualised medical advice, but would recommend speaking to your GP or if you have a contact for the haematology team to see if they can give you further information about what they are looking at as a potential diagnosis. Have they said to you what this could be?

It sounds reassuring that the team are completing the relevant diagnostic tests. At upcoming appointments it is likely that the team will carry out further blood tests to compare with these ones that you have had taken and may want to organise a scan to have a look at your bones, this may involve an x-ray, PET or CT scan. You can find out more information about diagnostic tests on our page Blood cancer tests | Blood Cancer UK.

Paraprotein being present in blood samples does need investigating further, as it shouldn’t be there. There are a couple of possibilities for abnormal paraprotein readings; myeloma is one cause; there is also another blood cancer called Waldenstrom’s Globulinaemia (Waldenström macroglobulinaemia ('WM')) or a precancerous condition called Monoclonal gammopathy of unknown significance ('MGUS') (Monoclonal Gammopathy of Undetermined Significance). A haematologist would be the best person to look at all your blood results, investigate further and let you know what they think is causing the rise in paraprotein levels.

We don’t want to worry you further as your haematologist is best place to discuss a potential diagnosis but you may find our page Myeloma tests | Blood Cancer UK and MGUS – Myeloma Infosheet helpful to read over as they include useful information about diagnostic tests, further information about paraproteins and serum free light chains and may help when thinking of questions you’d like to ask the team.

You may also want to update them on any symptoms that you are having, but do let them know in the meantime if you feel that any of these are getting worse.

Do let us know how your appointment goes.

Take care & warm wishes,

Emma (support services nurse)

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Thank you for your response :folded_hands:

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I had my appointment with the haematologist this morning and they said I have Monoclonal gammopathy of unknown significance ('MGUS') but they want me to have a full body MRI and further blood tests to see if it has progressed to Myeloma as I have some other symptoms indicative of it possibly having progressed and if they come back ok I will be on 6 monthly blood tests and keeping an eye on my symptoms. I’m not really sure how to feel but have had to stop thinking about it for now.

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Hello there @Katiep, a slightly belated welcome to forum from me. I’m really sorry to read of your diagnosis with Monoclonal gammopathy of unknown significance ('MGUS') yesterday, and of the symptoms that took you to be tested.

I see you’ve been asking on other threads about whether the itching and sweats are related to the Monoclonal gammopathy of unknown significance ('MGUS') which is so great, and I’d second what @Jules noted about keeping a diary of symptoms. Dear @Ceri_BloodCancerUK and Nurse @Emma_BloodCancerUK have also shared some great ways to seek further information.

Just in case you continue to feel like these symptoms are not being addressed by your specialists, I thought I’d share information about Jess’ Rule for future reference; “Jess’s Rule is a primary care initiative to encourage GPs teams to rethink a diagnosis if a patient presents three times with the same symptoms or concerns, particularly if symptoms unexpectedly persist, escalate, or remain unexplained.” Here’s the link: NHS England » Jess’s Rule: Three strikes and we rethink

Do consider giving the lovely Blood Cancer UK nurses a call free on 0808 2080 888 at this early stage after diagnosis and do keep note of symptoms new or old.

I’m sure you’ll note that you’re not alone with that diagnosis around the forum—perhaps you could keep reaching out to others as there’s such a wealth of support here.

Thinking of you @Katiep, do please keep us posted about how you get on.

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Thank you for your reply :folded_hands:

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Hi @Katiep, I’m posting this response with regards to a few of your recent posts on the forum, rather than replying to them individually - I hope that’s okay :slight_smile:

One thing worth knowing when you’re newly diagnosed is that while Monoclonal gammopathy of unknown significance ('MGUS') is monitored because it can, in some cases, develop into blood cancer, the risk for most people is quite low.

Blood Cancer UK’s information on this puts it at around 1 in 100 people with Monoclonal gammopathy of unknown significance ('MGUS') per year going on to develop blood cancer - so for the majority, monitoring is not a sign that progression is inevitable, but just of responsible healthcare. You can read more about what affects individual risk here.

I know you’ve mentioned some symptoms that are being investigated, and it’s good that this is being done and you’re staying on top of it. I also know it’s easy for me to point at statistics, but that the reality of living with that worry is very different - but I’m hoping it eases it a little.

Take care,

Ceri - Blood Cancer UK Support Services

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