just dx and horrified

I've just been diagnosed and like you, everyone kept telling me to expect the mass to be benign. When I saw the oncologist on June 4th, he didn't have the final path report and was optimistic. I had brought a copy with me that indicated a rare invasive spindle cell carcinoma that is triple negative. Lumpectomy with sentinel node biopsy is Wednesday. I have been told to expect chemo and radiation but not sure when it will start.

I'm anxious about what the treatment will be like, but I'm down right scared of the poor prognosis. Everything has just happened so fast! I ran across this forum and I'm grateful to have a connection with others who are going through the same emotions and physical upheavals. Trying to stay positive, but inside I am terrified.

I responded on the other thread, but wanted to add my voice here as well. I was diagnosed with Triple Negative completely out of the blue at age 34 in 2011. I had no known family history of breast or ovarian cancers, but it turns out I am positive for a BRCA1 mutation and my daughter is as well. There is actually a sizable minority of BRCA mutation carriers with no recent family history of BRCA-related cancers. The cancers are usually there further up the family tree where diagnosis didn't exist and/or cause of death was wrongly assumed. I recently discovered that one of my paternal great-grandmothers died of breast cancer; however, that in and of itself would not have raised my risk in the absence of my BRCA mutation. I inherited my mutation from my father (who died of a very aggressive cancer) and he came from a small family with few females. As I stated in the other thread, please ask to be referred to a genetic counselor. Your age combined with the Triple Negative status are red flags. If you have a BRCA mutation, it means a sharp increase in risk of ovarian cancer as well as other cancers. If you do have a BRCA mutation, a mastectomy is strongly recommended as the risk of future breast cancers (primary, not recurrence of this one) is quite high. If I had known when I was diagnosed that I have a BRCA mutation, I would've had a bilateral mastectomy with reconstruction during treatment. I am now planning my surgeries (both BMX and bilateral salpingo-oophorectomy for this year). It's good info to have should your children wish to be tested when they are adults. Your test results (if positive) would make their tests much more straight-forward. Also, if you are positive, there is growing research to indicate that the platinum-based chemos such as carboplatin and cisplatin work better for BRCA cancers. Not all MOs follow this, but it is something to keep in mind.

Yes, the chemo regimens given to us Triple Negatives cause hair loss. There are cold caps that allow patients to keep most or all of their hair. There are threads here to help you look into it. Some MOs are not supportive of the idea, but if your hair is something you feel strongly about, you may want to do some research there.

If I can answer any questions for anyone, please let me know.