Tonight I participated in #BCSM (Breast Cancer Social Media) chat. It’s always a treat to tweet with such inspirational women (and some men!). It reminds me how many important insights to transform health care come from patients first — because patients have a perspective on being sick no one else can have.
The topic tonight was the words we use around metastatic breast cancer. A lot of confusion surrounds the terminology of advanced breast cancer, but to recap Dr Deanna Attai:
If it’s in the breast or underarm – considered local recurrence. Other sites – mets even if same genetic profile as original #bcsm
Also as many others in the community have written about, it’s recurrence and metastases that keep breast cancer survivors up at night. Metastatic disease is what kills breast cancer patients. Even if you were diagnosed with early stage disease, there are no guarantees you may not develop later stage disease.
So, in the words of the #bcsm community, it is time for the words “cure” of breast cancer or even “prevention” of recurrence to go away. The terms don’t make sense when cancer can come back. They create a false sense of security for early-stage patients and an unfair sense of judgment if their cancer returns or metastasizes. That’s why this month, when the world is covered in pink, some breast cancer advocates are seeing red.
Despite the long term nature of these worries, many people on the chat resisted the term “chronic” for metastatic disease. The survival rate with metastatic cancer is still so grim (2 years or less!), it would be a odd use of the word “chronic” for such an active disease.
Yet, people living with metastatic disease need support. Their stories still need to be told. Metastatic cancer may be terminal, but people with metastatic disease also have a life to live. We need to hear more stories like Amy Berman, who went jetskiing to the Statue of Liberty after she decided not to receive treatment for her metastatic breast cancer. We need more conversations (and research dollars!) dedicated to metastatic breast cancer.
As Jody Schoger asked (and as we need to be asking more frequently):
How do you accept your fear and live well simultaneously? #bcsm
Breast cancer may not be a chronic disease, but it’s one requiring lifelong vigilance and support, nevertheless.
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