Treatment of Inflammatory Breast Cancer (IBC)

I would like to offer my thoughts on treatment of inflammatory breast cancer based on my experience and education of the disease. I see many women having chemotherapy followed by a mastectomy with same-day reconstruction, which delays radiation and could allow time for the cancer to grow. Remember, there is a reason for that radiation;  it is a very important part of the IBC care protocol. Women often tell me there was no discussion with their cancer team that it might be best to wait for reconstruction, or even if having reconstruction is a healthy option for them.

I am not laying this message out here to get anyone all up in arms that their caregiver is not a good one. I am happy for those sisters who have reconstruction, as long as it is later and not at the risk of their care. In a world of “we are not defined by our cancer” or “my cancer was just a bump in the road” banter, the message for a cancer patient to delay or Heaven forbid, not have reconstruction at all is a hard one to get out. The message is an important one because IBC is a different type of breast cancer and has a different standard of treatment that is based upon how IBC grows and spreads in the body. If your treatment for IBC was not in the order listed or if you had reconstruction while still in treatment, again, that does not mean you are doomed. IBC is a very sneaky disease, and to be best able to beat our cancer we have to understand our cancer.

The standard of treatment for this disease is:

  • Chemotherapy
  • Surgery, which is a mastectomy, a radical one, which is not skin sparing.  (Some doctors are suggested not removing the breast, very case by case issue.)
  • Pathology, if it comes back clear, you move to radiation.  If pathology is not clear, possible to have more chemotherapy but more likely to be moved into radiation.
  • Six weeks of daily radiation, sometimes twice a day depending on the needs of that patient.
  • Then if possible, reconstruction after a waiting period of maybe as much has two years for many reasons….hopefully not one with metal implants that will limit future testing. Shocking to hear, but I have met women who had to have their post cancer implants removed to allow for testing!

So from me to you, just laying this out here, IBC sister to IBC sister… just because you didn’t get treatment this way, it does not mean you are doomed.  Proper care for IBC is different that general breast cancer and more coming forward every day asking, “what is the standard of care for IBC?” Here we hope to educate you and also walk you through treatment.

Hope always,

Terry Arnold

Founder, The IBC Network Foundation