Aretha Franklin and Why Speaking Up About NET Cancer Matters

Recently, Aretha Franklin, an artist and icon who created music that transcended generations, passed away of pancreatic neuroendocrine tumor. Widely (and mistakenly) reported as pancreatic cancer, a small chorus of voices emerged to clarify Franklin’s cause of death.

aretha-franklin-cover

Image from here. This is the June 28, 1968 cover of Time. I chose this image because it represents how her music and popularity spanned generations — my mom listened to her in the 60s and I remember her from the 80s. I mean, who doesn’t know the song, RESPECT?

 

Some may say this need to correct and clarify — during a time of grieving — is in poor taste. Others will argue that, because pancreatic neuroendocrine tumor is a completely different disease than pancreatic cancer, it is critical to correct the error.

For the last few days, I’ve felt torn about the issue. Neuroendocrine tumor (NET cancer) is a lesser known and often misdiagnosed disease, which makes any media visibility, education and advocacy even more critical for raising awareness among the general public. As a caregiver, I get it. But for me, it somehow felt inappropriate to focus on someone’s cause of death amidst so much shock, grief and sadness.

Since then, I came across a story where one patient advocate’s proactive efforts led to a positive and lasting difference. In this blog post by Dr. J. Leonard Lichtenfeld, Deputy Chief Medical Officer of the American Cancer Society (ACS), he states that because the error — pancreatic cancer vs. pancreatic NET cancer — was brought to his attention, the ACS will be separating their information about the two cancer types on their cancer.org site. He also said that he received a number of media interview requests about Franklin’s cancer and, while he was unable to find time for them, without the advocate’s correction, he may have continued to perpetuate the error to the media. Close call!

Lesson learned and an important reminder — there’s never a wrong time to speak out. In fact, in this age of social media news, it is becoming even more critical, as misinformation has a way of quickly spreading out of control.

For more information, here is a note from the NET Research Foundation (NETRF) and here is a fantastic article from one of NET cancer’s most tireless advocates.

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