My sister was diagnosed with triple negative breast cancer over a year ago. She went thru chemotherapy, a double mastectomy, radiation after (as an insurance policy) and within a few months after, found a rash that was biopsied as breast cancer.
She has gone thru more chemo with immunotherapy that seemed to be working then stopped. The rash is spread around her torso and basically following the line of where her radiation ended.
We’re looking for others with similar medical diagnosis or a doctor that has had patients with the same.
Any recommendations on medical specialists who have knowledge with this??
looking for some guidance. Thanks
Hi
I’m so sorry about your sister’s experience - it can all happen so quickly can’t it. I have metastatic TNBC, with one tumour behind the bridge of my nose and multiple skin mets. They don’t form a rash but are subcutaneous lumps around the back of my neck and my chin (a few scattered elsewhere) so I’m not in the same position as your sister. I’ve been treated with capecitabine (oral chemo) for 2 years now and, although there are new breakouts occasionally, Cape seems to keep it under control. I’ve been fortunate so far.
I have come across people with this condition (rash). I’m not sure if this is appropriate to the forum but I’ll risk it. There is a Facebook group specifically for Stage 4 TNBC. One is global, the other is UK and Ireland. You might find more responses to this query somewhere like that. There are other stage 4 groups, not specifically TN, as the rash may be more about the metastasis than about TN. I don’t know.
If you are in the UK, the nurses’ helpline here (number top right) is excellent. Not just a sympathetic ear, someone to listen, but well informed and probably able to take you through options. Are you not in a position to discuss options with your sister’s oncologist? It may be that, within the team, they have someone with specialist knowledge of the latest research, someone who can offer a second opinion?
I hope this helps. My best wishes to you both
Jan x