Post-Mastectomy Collarbone Pain & Cancer Journey: A Patient's Story

Question
I was dx with Stage III ducal situ breast cancer on April 08.  It started with a hot draining feeling from my collar bone area down into my left breast.  The next day I woke up to find a lump the size of a tangerine in the UOQ.  I've had mammogram annually since I turned 40 (14 years ago).  I immediately went to my doctor who sent me for a mamo.  The next day I was sent to a breast surgeon for a core biopsy.  I started chemo of taxotere,carpoplatin and herceptin and did 5 sessions.  I complained of the pain in my collar bone multiple times resulting in bone scans,Petscans,MRI, Catscans, & xrays.  All negative for any mets. The last bone scan was 2 weeks ago.I had a lumpectomy followed by a mastectomy (Oct08)and currently going through 35 sessions of radiation.  The pain in my collar bone has increased and since my tests have been negative my oncologist and radiologist just prescribe stronger pains meds.  Started with codeine, vicodin and percocet none that take the pain away.  What tests do I need to discuss with my doctors as this pain is not going away?  Thanks,  Julie

Answer
This is a hard question! If I read your question correctly your pain problems there started even before surgery. Right? Since all these radiological tests have been negative I doubt very much that your pain is the result of any metastatic cancer growth in your collar bone. So this phenomenon is therefore most probably outside the expertise areas of your surgeon, your oncologist and your radiation therapist - and also outside mine. The only experts that can evaluate this are probably pain specialists and neurologists. I therefore strongly suggest that you should be referred to such specialists.