Skeletal Metastasis Unknown Primary

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Hi,

My mum has recently been tentatively diagnosed with SMUP as CECT, PET, x-ray, colonoscopy, gastroscopy, mammography, abdominal ultrasound and blood work were all unable to identify a primary. The mets seem to be all over - spine, pelvis, ribs and more, but no other organs, just bone. We're still waiting for biopsy results.

Has anyone been in this situation? Did you ever find the primary? Any helpful treatment? Any success stories? Remissions? Any hope?

There's so little information about cases like these, they seem so rare I don't know what to think

  • 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 Pray