Skeletal Metastasis Unknown Primary

Hi, I was in this boat a few months back. Has your mother had a bone marrow biopsy? That’s what helped the Drs discover I had breast cancer (even though nothing showed up on mammogram - my only symptoms were extensive bone mets and severe anemia). I was due to start treatment for presumed breast cancer when they finally confirmed it was lobular breast cancer after finding one very slightly enlarged lymph node through an ultrasound which they only biopsied as they were stumped. I really hope you get some answers soon, it’s so awful not knowing what’s going on. In this situation breast cancer is probably one of the better options- I’ve been on treatment now for 7 months and I’m doing pretty well; the treatments have side effects of course but they can give a few good quality years before disease progression in many cases. I hope you get some answers soon xx

Thank you su much for you reply and sorry you're in this position. I'm glad you're doing well and you gave me some hope. I'm so grateful.

Yes, she had a bone marrow biopsy, and we're waiting for results.

But none of her lymph nodes are swollen and nothing came up on a PET-CT scan - did you also have an inconclusive PET scan?

It's so terrifying that one can be doing all the preventative scans like mammograms and still end up in this position 

I only had a ct as the bone marrow biopsy was done after that and suggested breast cancer- I don’t know how xx

Thank you so much for sharing, I really appreciate it

Hi 

sorry to hear about your mum . My sister was diagnosed with CUP 18 months ago . We had never heard of CUP , and we were never had the information to really fully understand because it’s rare , she had all the tests said tumour was in stomach , the oncologist said CUP cancer can only be treated not cured because all CUPS are cancers that have spread . My sister had the PET scan they couldn’t pick up the cancer so we never knew were the original was . She had a long distressing 18 months chemotherapy etc, but sadly she passed away . CUP is an awful cancer with poor prognosis. Their needs to be more education out their about it and I hope you can spend quality time with your mum that’s the most important thing time