Anybody Diagnosed With Occult Breast Cancer

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Hey Everyone, I have been diagnosed with HER2+ in my lymphnode which is the lump I first found. After lots of tests and scans they have been unable to find the primary source in my breast. I’m now going through chemo but my oncologist has mentioned a double mastectomy to be sure. Has anyone gone through this. The oncologist said they may remove both and still find nothing so I’m not sure which to choose. I know I have to wait and see if my lump in my lymph node reduces with chemo but I can’t stop thinking about the decision I’d have to make. I know I am a rare case with only 1 - 3% of women having an occult cancer.

  • Hi I am sorry to hear of your diagnosis and the decisions that you have to make.  I have just been diagnosed with Occult breast cancer ER positive and finding it impossible to find any information online about it.  The only information I have at the moment is the the axillary node is 6cms and the MRI showed 3 more lymph nodes involved and the bone scan showed a hotspot on my spine so had PET CT scan and now awaiting the results of this.  |I am still waiting on the stage and grade and for my treatment plan.  Mine was picked up on a routine mammogram as an outline and couldn't be felt at that stage but the ultrasound found it and the did 3 biopsies and can now be felt easily.

    Take care xxx

  • Hi VOD, thanks for responding, I too can’t find any info anywhere apart from really old threads on forums. Interesting that you had a bone scan as I haven’t been given one. My oncologist did note on a blood test ‘bone’ so wonder if that picked up nothing so no need to have a bone scan but I will ask. Keep me informed, I was rushed to chemo first as my doctor delayed my diagnosis by three months x

  • I can only imagine what this feels like for you.  This was nearly me but mri found grade 3 cancer but is tiny and lymph nodes huge.  Just goes to show size doesn’t matter in these cases.   I see oncologist next week for chemo first xx