Positive Bence Jones Test - can this still be MGUS?

Hi Nenen and a warm welcome to this corner of the Community although I am sorry to see you joining us and hear about your concerns.

I am Mike and I help out around our various Blood Cancer groups. I don’t have Myeloma but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

There are a few active members at the moment so let’s look for them to pick up on your post. Do click on the main ‘Myeloma Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.

You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support or just a listening ear.

We also have our Ask an Expert section but do allow a few working days for a reply.

For good information do check out Myeloma UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 0800 980 3332

You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups, the one I attend does have a few folks with Myeloma in it so worth checking.

Always around to help more or just to chat.

Many thanks for your reply and all the info Mike. This is much appreciated.  
I am beyond scared and angry right now as, despite having dropped a letter into my GP’s surgery last night regarding my positive Bence Jones test result and asking if a doctor could call to let me know whether or not this means I do have myeloma and will be referred to haematology on a 2-week pathway, and then telephoning the surgery at 8:30 this morning to check they got my note and being told I’d been booked in for a doctor to telephone me today, they did not contact me.  I’m now left worrying all weekend with no idea if this positive test result means I definitely have cancer or not. I just want to know one way or the other.  

I am in such pain in the iliac region of my pelvis on sitting and, according to the GP yesterday, the x-ray just showed mild osteoarthritis in my hip joints so no explanation of why it is so painful for me to sit, even with a memory foam cushion with coxyx cutout. I have no idea if it’s possible for myeloma to cause bone pain even if lesions cannot be seen on X-ray. I’m so frustrated, confused and worried. I run my own business whilst caring for my disabled husband and we are just about to move house (STC) and I have no idea whether or how I will/can manage. I’m sorry for the ranting and pity party but just wish the GP could have rung as promised or at the very least one of the people at the GP’s surgery could have let me know what’s going on.

Sorry to hear that your surgery did not call you….. do call them first thing Monday.

Having sat with my great GP over most of my 25 years journey and not only talked about my Lymphoma journey but also about how conditions like Myeloma is diagnosed the role of a Heamatologist is very important as they are the blood cancer experts….. my GP admitted that when it came to blood cancers his experience was very limited….. so let’s look for your Heamatology appointment to come through soon ((hugs))