BC Staging Confusion

Nessaness

I am confused because I assumed I would need to know the precise stage of my triple negative IDC in order for the best treatment plan to be put into effect. (Not to mention knowing it for myself so I can Google it over and over again so I can stare at the prognosis!)



With the decision that chemo needs to be started immediately (on this egg-sized and EXTREMELY painful tumor) and surgery put off until chemo is done, I am left without absolute knowledge of my node status. Is my oncologist just going to make an educated guess as to my BC stage by the estimated size of my tumor and what my CT scan shows? Is this what everyone else, that has neoadjuvant therapy, deals with?



I would prefer that we know the full extent of this cancer instead of guessing it by not being able to see possible node involvement on the CT scan. Then, after chemo, being told that if it had been there, it had been killed by the chemo.



Am I nuts to want to know for sure, right now, the full and complete scope of the cancer in my body?

bluepearl

No your are not nuts. You have every right to want to know these things! An egg-sized tumor is pretty big and needs to be shrunk by chemo. That being said, I would suspect positive node(s) with a triple negative that size, but stranger things have happened. The chemo would address any infiltration into your nodes as well since it is systemic treatment. Scans are all well and good but they don't always tell the truth. Surgery/biopsy  will. If you are node negative then, then you will be node negative. Sometimes, even small tumors that are node negative can have passed into the blood stream first. Sometimes they run right through the sentinel nodes without leaving a trace. Breast cancer always is an unsure thing for us all; even those with have the BEST prognosis have no guarantee that we won't face the monster again. I did. AND, you are also not a statistic, your are a person. Numbers are all fine, but shouldn't be taken as written in stone either, especially since it is now known that every woman's cancer has its own genetic signature. I guess the biggest lesson I learned in my journey is to live the day like we did when we were children.....live the day!