[Sunnykat]

Elevated Bence Jones - always a concern?

by Sunnykat on Sat Feb 06, 2016 5:26 pm

Hi,

Really not sure what to ask as I'm quite confused. From results from a blood and urine test which showed low iron (38), my doctor 'muttered' the words 'elevated' and what I later worked out were the words 'Bence Jones'. Then she stressed twice not to worry, as it could be my normal individual and she would retest in 6 months.

Hence my confusion. Does "elevated Bence Jones" always and only indicate I should have a concern?

I have tried to research my query to no avail so far. Nor do I want to overreact, but naturally I am nervous.

Thoughts, feedback genuinely appreciated.

Thank you, Michele

[Multibilly]

Re: Elevated Bence Jones - always a concern?

by Multibilly on Sat Feb 06, 2016 6:02 pm

Hi Michelle,

Welcome to the forum.

Was this a 24 hour urine collection test that you did, or a quick spot urine sample test in the doctor's office? Spot sample urine tests are not very good tests for screening for conditions such as MGUS.

Also,which blood tests did the doctor run? Do you have those test results?

You also said you have a low iron level. Do you now what your hemoglobin level is?

You should really check with a hematologist, but I wouldn't read a lot into just an elevated Bence Jones reading on a urine test (which simply means that some protein molelcules known as free light chains have spilled over into your urine). One really needs to have the results of several other tests such as a serum immunofixation, serum protein electrophoresis, serum free light chain assay, etc to figure out if something like MGUS may be suspected.

Getting re-tested in a few months sounds prudent, but the tests should really include the tests I mention above and you might consider having them preformed by a hematologist that specializes in multiple myeloma just to be thorough. If you let us know what city you are in, folks on this forum can makes some recommendations on where to find those specialists.

[Sunnykat]

Re: Elevated Bence Jones - always a concern?

by Sunnykat on Sat Feb 06, 2016 8:22 pm

Hi Multibilly. Thank you for your welcome and reply.

I don't really like entering a discussion board such as this, as I kinda feel I'm here falsely, at least at this stage, as I understand the importance of this forum.

I don't have the answers to those great questions you posed and will make another appointment with my doctor this week to hopefully allay my concerns and also obtain details of results so I can advise.

(Having been on iron tablets and B12 spray for over 6 weeks. Hasn't helped symptoms I have had, which have reoccurred every so often for a few weeks at a time for a few years.)

I will be in touch on this forum shortly as I owe you the courtesy of a response owing to your detailed one. Thank you. Oh I am in Brisbane, Australia.

[Multibilly]

Re: Elevated Bence Jones - always a concern?

by Multibilly on Sat Feb 06, 2016 10:48 pm

Hi Sunnykat,

We have quite a few folks on the forum from down under and some of those folks will likely make some recommendations on where to find some top specialists in your area. In the meantime, Dr. James Morton is a name I've come across before on this forum and who is based in Brisbane. http://www.iconcancercare.com.au/our-doctors/dr-james-morton/

By the way, I'm not totally sure about how medical records are dealt with in Australia, but you can likely just ask your doctor's office to email you copies of your records.

[Sunnykat]

Re: Elevated Bence Jones - always a concern?

by Sunnykat on Sun Feb 07, 2016 3:23 am

Thank you again for further information. Not much else to report just yet, so will keep your information handy.

Check in with my doctor up next.