Hi everyone. I’ve just had some blood test and 24 urine Bence Jones protein test and just got my results on NHS app which have said adnormal Bence Jones theres nothing else on the report no numbers or anything. Obviously finding this in urine doesn’t look good and I have done the thing you told not to do and googled what this could mean and majority of the time seems like this is multiple myeloma or other serious blood cancers. The rest of my results are not too bad kidney slightly below normal range, blood cells white and red are ok, white being a tiny bit high and no M proteins found in blood but not tested in urine. I also have good bone profile with right levels of calcium.
I’m just terrified now because of that finding and for some reason have to wait 3 weeks just for telephone appointment which has me really anxious and worried but at the same time if they considered this serious would they not at least tell over the phone sooner?
I’m still a bit unsure if Bence Jones protein can be found without being serious problem sometimes seems this can be found with infection or inflammation then other times it seems only.appears if something serious is wrong but again I’m not really sure?
As for my general health I actually feel fine apart from excessive sweating (not night sweats) which I’ve actually had for many years and the reason I have had alot of blood tests and urine tests was because I was following up on this symptom. From something that has gone from quite minor to something that seems very serious has me terrified.
Dear @Ssimsim,
Welcome to our forum, I am really sorry for the worry that has led you here. I can understand your anxiety.
I am unable to really give you much information about Bence Jones, I do not think it is diagnostic tool that is used that commonly. Blood tests are more commonly used to detect myeloma which of course was not the reason for you to have the tests done in the first place. The GP may wish to do further blood tests to build a bigger picture.
I would encourage you to call back through to the GP to ask for an earlier consultation, please do explain the anxiety you have around this. You can also call your GP’s secretary, they may be able to ask your GP for an opinion on the results which they can feedback to you.
It is reassuring to know you are well in yourself. Take one step at a time and try to avoid google if you can, this isn’t always our friend.
We do have a support line so if you would like to talk please do call us - 0808 2080 888.
Best Wishes,
Heidi J (Support Services Nurse)
Oh @Ssimsim I am glad that you have found us, but I am sorry that you have this anxiety and needed to find us. @Heidi-J-BloodCancerUK has given you a great response.
I was actually diagnosed at this time of the year, 20 yrs ago, and left in limbo till the New Year. I felt as if I were in a bubble with the world celebrating around me.
However it does give you the opportunity to write down all your fears, questions and practicalities for your next appointment.
Your are now part of our forum family and we will be about on here over the holiday season.
I am sure many of us might share similar feelings and thoughts to you.
Be ever so kind to yourself and please do keep posting.
Hi thanks for the welcome I think the Bence Jones protien is fairly new in early detection because receptionist and nurse never even saw the test I done before. My appointment is now next week which is a bit sooner. I doubt further test will be done now until after new year.
Good Morning @Ssimsim,
I am glad you have managed to get an earlier appointment. You GP may well suggest some further blood tests initially which hopefully will be done quite swiftly but you are right, everything does slow down over the holidays. Hopefully at the appointment they will offer you some further information about what they think is going on.
Do keep us updated and we are here for you, whatever you need.
Best Wishes,
Heidi (Support Services Nurse)
So today I had telephone appointment with doctors to go over my results and Bence Jones protein that says adnormal on NHS app is actually negative and wasn’t found. The reason it says adnormal on my test results is actually indicating that there was adnormal findings on some other tests and they were grouped. I asked 3 times on phone to make sure he was reading it correct I find it so strange they would label a test result as adnormal for that invidual test but not actually mean it for that test specifically. Turns out looks like I’m ok but still didn’t really like how this doctor didn’t seem to care about any of my results and said I’m fine. Yet I look at my results online and it says 7 or 8 things are elevated. It is a relief but really he didn’t seem to care unlike my original doctor who seemed lovely and wanted to really help me getting to cause of some symptoms.
Hi @Ssimsim thanks for the update.
What do you think would give you peace of mind?
You might have peace of mind
Would you want to get another opinion?
Would you want to go through the NHS PALS scheme (Patient Advice and Liaison Service)?
Please do let us know what you decide.
The Blood Cancer UK support line is there for you on 0808 2080 888
Look after yourself