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DCIS lead to IDC, receptor status question

hey all, I had my bilateral mastectomy on 2/1/24 with expanders placed. End up being invasive, so have to go back in this Tuesday for lymph node removal. They did not get the receptor status on the 1st, so currently waiting for that feedback from provider. My question I have and just don't understand is, if on Tuesday lymph nodes are clear, bilateral mastectomy…if receptors show chemo needed….why? If breasts are removed and lymph nodes clear why would they talk about chemo? Guess I need the "dummy" book version of explaining the receptors lol. We do plan on talking with the provider again if he says he would like to move forward with chemo. He just really needs a very good explanation…not just because "it's protocol" type thing. I am also really thinking about having my expanders removed and just going flat. They are uncomfortable and I just ready to be done with everything, sorry just feeling a bit defeated right now. Also, a few days after I got home from mastectomy surgery I ended up being dx with "Ramsay Hunt Syndrome" (paralysis on right side of face, shingles inside my ear affecting the facial nerves). So another whole new challenge to face. I know I will get through all of it…just hard. I just can't imagine having to do chemo and feel even worse if they say I need to, I know ultimately the decision is my choice, but I also need clarity. Thank you for any feedback, info and your experiences of going flat. I'm ready to be able to lay flat in my bed and sleep. How long did it take you to get to that point?


  • maggiehopley
    maggiehopley Member Posts: 103

    Cancer cells can leave the breast through the bloodstream as well as the lymph nodes. There is no way to know for sure that there are no cancer cells trying to set up shop elsewhere in your body. Chemo is given to kill any cells that have left the breast; once cancer develops outside the breast it is incurable. Some types of breast cancers respond to chemo and others do not. The tests will tell you if chemo offers a benefit to you, and you might also be offered an estrogen blocker (taken as a daily pill) to prevent recurrence as well.

    I had a bilateral mastectomy and chose to stay flat, and I am happy with that decision.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,737
    edited February 16


    maggiehopley provided the key point. Breast cancer cells can travel through the bloodstream in addition to the lymphatic system. You know your cancer is invasive so even if all nodes are negative, there is still a possibility for cancer cells to move via the bloodstream. I only had one positive sentinel node, yet I already had bone metastasis so my mo believes it spread through the bloodstream*. I also wanted to add that bc is much more diverse and complex than I ever imagined and as someone with no medical expertise my initial simple take on it was way off base. It turned out that I knew very little about bc and its treatment until I became a patient.Take care
    *I was stage IV de novo and my situation has been unique but wanted you to understand that nodal involvement is not the only mechanism by which bc spreads.