Worried about Myeloma - Bence Jones Test

Hi everyone. For a few months I have been worrying about a situation. What began as me going to the Dr as a 50 year old Man thinking he should get his prostate PSA level checked as is very prominent these days, has sparked a worrying change of events.

The PSA level was ok but it was noticed that i had blood and protein in my urine, not visible to the naked eye but can been seen under Microscope. 5 or so urine and blood tests later and the results keep coming back the same. I have been referred to the Renal department at the local hospital for more tests and for an Ultrasound and I was thinking along the lines of them suspecting I may have some kidney damage.

I called my GP today but could not get an appointment as I sometimes am getting dizzy post eating and was thinking it might be wise to get checked for Diabetes. I called and the receptionist said it was on the system they wanted to do a specific 'Bence Jones Test' which i can see is a big indicator of Myeloma depending on the results of course. I asked to speak to a Dr but of course there are no appointments and its a case of calling at 8am each day and hoping for an appointment which is not guaranteed.

My worry is do they do a Bence Jones test only when they suspect something or do they do this as a matter of course as a routine to eliminate it as a possibility.  My mind is all over the place and I am partly convinced the very fact they are checking is on the basis of a suspicion they have. I just wondered if anyone else has been through this and could put my mind at ease or make me worry more.

Thank you so much for anyone that is kind enough to answer. I do walk 10 miles a day and my GP initially cited that as a reason for my increased blood and protein levels in urine but he seems to have stopped mentioning this which has worried me more but demand exceeds supply so much in the surgery I simply cannot get an appointment.

  • Hello and thanks for your enquiry,

    Unfortunately, you are going to need to persevere to speak with your GP about this. You have been referred to have your kidneys assessed at the hospital. A GP will consider any other possible explanations for kidney symptoms, and will often request specific tests to rule something in or out. They will often forward on results to a hospital specialist.

    I can appreciate that you are worried, but we can't comment specifically. It sounds like your GP is being thorough, and considering all possibilities, and wanting to find out more clinical information.

    I hope that you manage to speak with your GP soon,

    Best wishes,

    Vanda

  • Hi Ryan

    I understand your concern and also your frustration at not being able to get a GP appointment. The Bence Jones test is probably just to rule out Myeloma rather than because it is suspected. I have metastatic SCC which has spread to my bones and caused lesions and fracures. In order to get this diagnosis I had a Bence Jones test and PSA test to rule out myeloma and prostate cancer as possible causes.

    I have same problem getting appointments with doctor. I go to our surgery before it opens 7.30 and make an appointment at the desk. Beats waiting an hour on the phone only to be told all todays appointments have gone. Please try again tomorrow.

    Ed

  • Hi Ed. Thank you so much for your reply especially as you have your own battle mate. It says a lot about you to take the time to reply. My logical brain tells me its probably to rule it out hopefully.

    All the very best. I truly appreciate your kindness and wish you all the luck in the world. 

  • Unfortunately not all surgeries offer the option for turning up at surgery to make an appointment..

    This system was stopped in many health authorities.. meaning we now have to phone at 8.30 and queue.. very often being informed 'all appts are taken for today '. after a lengthy wait, sometimes 40-6 minutes.. try again tomorrow is the advice given

  • Hi Eastendgirl

    Seems we are fortunate where I live. I did not realise other health authorities had a phone only appointment system. What a poor way to operate. 

    Perhaps using multiple phones as in scramble for event tickets would increase chance of getting through early enough while there are still appointments available. This obviously would be grossly unfair to others in the queue.

    We have a walk in centre nearby 8 miles where you can just turn up and often wait an hour or two but you do get to see a nurse or doctor who is able to examine you and refer you further if needed.

    Ed

  • Hi Ed.. I have used land and mobile phone options more than once, still hasn't avoided the dreaded ' all appts are taken ' message.. no walk-in centre available either.. along with lack of public transport for accessing further afield.. aggravated by complex medical issues which impact severely on the 8.30 am ruling..

    I appreciate I am not alone...

    Kate