I’ve been diagnosed with triple negative Metaplastic breast cancer (apparently very rare) on the 1st Nov, been in and had a wide excision with sentinel node biopsy on the 18th and I’m due back on Friday for my results and treatment plan. I’m getting really nervous about results, finding it difficult to get much info on this type of cancer and what I do find seems really scary! Lots of talk about rapid recurrence and spread - I’ve stopped looking to be honest! but would love to hear from anyone else who is being treated for the same type or who been through it and came out the other side.
I can’t quite believe this is actually happening…despite checking my blue boob and wounds everyday it still seems like it isn’t happening to me! Contemplating how my kids might need to grow up without me was not on my to do list for the run up to Christmas but I’m trying really hard to be positive.xxxx
Hi, hope your appointment went well today? I also had metaplastic TNBC. Yes, it’s very rare & there isn’t very much information about it. The information there is available is very scary. It won’t let me message you. Maybe if you send me a message I can tell you about my experience. Xx
I have got a path report from my biopsy “high grade malignancy with spindle cell morphology”, “markedly atypical with numerous bizarre forms” (could be describing my entire life actually).
Concluding statement that it is “most likely metaplastic carcinoma but the differential diagnosis includes spindle cell carcinoma and a malignant phyllodes tumour. A pure sarcoma can also not be entirely excluded”. The breast consultant has recommended lumpectomy and sentinel node removal, followed by chemotherapy. My initial and repeat lymph biopsies were all clear, but CT scan showed spots in lungs, abdomen and bones, the PET CT only picked up lungs, which are regarded as suspicious of mets because of the primary diagnosis. So far it is ER and PR negative, waiting for HER2 results. I guess that surgery first will allow a full diagnosis to enable better chemo selection? How long after surgery does Chemo take place? My surgery is booked for 19 August, which is physically is soon as they can do it due to the COVID self isolation restrictions.
I would love to know how you all got on with the surgery before chemo experiences. Thank you
I have also just been diagnosed with TNMP, how did you get on ? I am just at pre surgery stage. It is so rare that it’s hard to find any information at all !,hoping that I can link up with other metaplastic cases .