There are many too many varieties of cancer out there (or in us, to be more precise). Seems like there is one for every organ of the body - inside all of our human mechanics (like the Multiple Myeloma lurking in the bone marrow of yours truly). In my new job (11/2020 - I guess it's not so new anymore) I have the responsibility of developing and communicating information about a new option of therapy for women (and some men) who are dealing with late-stage HER2+ metastatic breast cancer (mBC). Over the past two weeks I have been listening in on 9 IDI's (in-depth interviews; aka: personal focus groups) with women who qualify for our drug. This means that they have been diagnosed with breast cancer, had a course of treatment, attained remission, experienced a recurrence and corresponding treatment, and are now confronting yet another spread of their dread - the cancer is metastasizing. What I have is a paper cut compared to the medical struggle that these brave folks are contending with.
With no violation of their HIPAA rights or privacy I can reveal a few insights from these courageous fighters.
- They don't like being thought of as fighters because if/when they succumb to the disease (which the overwhelming majority eventually will), they don't like to think that these "fighters" are now losers because they could be misperceived as having lost the battle - didn't try hard enough.
- They understand the energy and attention behind breast cancer awareness and the welcomed successes, but they see this as "pink-washing" which focuses on the successful treatment and not the remaining patients who must keep going with their mBC existence.
- They resent some of the misrepresenting commercials on TV that feature "a life of puppy dogs and smiling grandchildren." But they do appreciate how there are drugs out there for their mBC (like ours) that can give them more moments providing that it comes in the form of quality-of-life time "not sitting in the hospital, just waiting to die."
- They want the truth about the chances for progression-free survival from their treatments, and the unvarnished reality of the anticipated adverse reactions. Would they trade more time with their family and friends for the inevitable side effects "hell yes!" (one replied unequivocally).
If you happen to know anyone who fits this criteria, this may help you understand and support them that much better. I know that this has given me and our team a heightened sense of respect and sensitivity toward their plight, and potential hope that we can offer when communicating how our option could be of benefit to them.
