Written by Lisa Yen, NP, NBC-HWC - August 17, 2018
By now, you’ve probably heard the tragic news that soul legend Aretha Franklin passed away at 9:50am on Thursday, August 16th from "advanced pancreatic cancer of the neuroendocrine type," which was confirmed by Franklin’s oncologist, Dr. Philip Phillips of Karmanos Cancer Institute in Detroit.
Though this 18-time Grammy Award-Winning singer and songwriter known for hits such as “Respect,” “Natural Woman,” and “Say a Little Prayer” battled health issues for years, she chose to guard her privacy rather than reveal any details. People knew that she underwent surgery in December 2010, after which she claimed “the problem has been resolved”. Arethra Franklin’s death comes only three days after reports that she was “seriously ill.” This loss is felt by all.
Until now, perhaps the most famous celebrity to die of neuroendocrine cancer (aka neuroendocrine tumor or NET) was Steve Jobs. In March of this year, Bollywood actor Irrfan Khan, known widely for his roles in Slumdog Millionaire and Life of Pi, revealed that he had been diagnosed with neuroendocrine tumor (NET). While there has been a rise in the attention given to NET following the death of Steve Jobs, there continues to be much public misunderstanding. Today’s news was a good example of this.
News reports of Aretha Franklin’s death are making the common mistake of confusing pancreatic adenocarcinoma with pancreatic neuroendocrine tumor. To help clear up some of this confusion, here are some FAQs:
Is Neuroendocrine Tumor of the pancreas a “rare form of pancreatic cancer?”
NO! It is in fact not a “pancreatic cancer”. It is a distinct cancer that behaves differently and originates in different cells within the pancreas. Its prognosis and treatment are completely different.
Neuroendocrine tumors are a perfect example of why it is important to move away from the the traditional way of identifying cancers by the organ where they originate. Instead, it is more accurate to identify the cancer by the type of cells. Correct classification leads not only to proper treatment as well as realistic expectations by patients and their loved ones.
While Neuroendocrine cancers may originate in cells within the pancreas, they also can arise in other hormone-producing cells elsewhere in the body. They are found most commonly in the lung or gastrointestinal system but can originate in other hormone-producing cells. Neuroendocrine cancers are sometime also called carcinoid, GEP-NET (gastroenteropancreatic NET), and pancreatic NET (islet cell tumor, gastrinoma, glucagonoma, and insulinoma).
What is the difference between neuroendocrine cancer and “pancreatic cancer”?
Aretha Franklin did not have pancreatic cancer. She died of advanced neuroendocrine cancer that originated in the pancreas.
What is Pancreatic Cancer?
Pancreatic adenocarcinoma is a cancer of the exocrine pancreas and is often referred to as “pancreatic cancer” or “pancreatic adenocarcinoma.” These comprise approximately 95% of all cancers that originate in the pancreas.
What is Pancreatic Neuroendocrine Cancer?
Pancreatic neuroendocrine tumors (PNET) is a cancer that originates in the endocrine cells of the pancreas. Tumors that originate in the endocrine cells are referred to as “pancreatic neuroendocrine tumors” or “pancreatic islet cell tumors.”
PNET make up approximately 3-5% of cancers that originate within the pancreas.
As stated above, neuroendocrine cancers affect cells throughout the body that secrete hormones most commonly in the gastrointestinal system (stomach, small intestine, large intestine, rectum), the lung, pancreas, or other parts of the body. It commonly spreads to the liver, lymph nodes, and the bones.
Is NET curable?
Unfortunately, no. While early detection and intervention improve overall survival, there is no cure. Therefore, proper surveillance with appropriate labs and imaging as well as follow-up with a NET specialist is important.
Why does this distinction between Pancreatic Neuroendocrine Tumor and Pancreatic Cancer matter?
It makes a big difference for research funding! While organizations such as PANCAN are devoted to pancreatic cancer research, NET Research Foundation invests specifically in NET research. NET Research Foundation is dedicated to finding treatments and cures on behalf of the approximately 170,000 people in the US with neuroendocrine tumors.
It makes a difference for those affected by NET because it creates better understanding of the disease. News articles stating incorrect information about pancreatic cancer stir up more fear and anxiety for those battling NET. Accurate information fosters hope.
How can we show R-E-S-P-E-C-T? (What can I do?)
The mission of LACNETS is to expand awareness and educate people about neuroendocrine cancer.
If you read or hear incorrect information about NET, contact the news agency, publication, journalist, reporter, or editor to give constructive and respectful feedback. Some news services provide the ability to comment on news stories. Or respond via email or Twitter. (There are some useful links below that you can send.)
Share accurate information about NET with your friends, family, and communities.
Share your own story. Personal stories are powerful.
Say a little prayer for the family of Aretha Franklin…and also those fighting this disease.
Here are credible sources with accurate information about neuroendocrine cancer:
What is the difference between neuroendocrine cancer and “pancreatic cancer?"
NET survivor Mitchell Berger has written an excellent NPR editorial explaining the difference between pancreatic neuroendocrine tumors and pancreatic cancer and calling for greater education and understanding about neuroendocrine tumors. Click here to read the article.
General information about Neuroendocrine Tumor:
Lisa Yen, NP, NBC-HWC is the Program Director of LACNETS.