On 16th Aug 2018, Publicist Gwendolyn Quinn told The Associated Press through a family statement that Franklin passed at her home in Detroit. The statement said “Franklin’s official cause of death was due to advanced pancreatic cancer of the neuroendocrine type, which was confirmed by Franklin’s oncologist, Dr. Philip Phillips of Karmanos Cancer Institute” in Detroit.
Clearly he meant Neuroendocrine Cancer with a pancreatic primary. However, in the fast moving social media world, this is what went out with the lazier writers and editors abbreviating it to just Pancreatic Cancer. All of these incorrect posts will now be embedded in the bowels of the internet and used for years to come by those writing about the Queen of Soul. We in the Neuroendocrine community now have a much harder task because the press releases and her doctor did not articulate the type of disease correctly. The same thing happened in 2011 with Steve Jobs. It is considerably frustrating for the Neuroendocrine Cancer community.
But this story does gets better, see the latest update at the end of the article.
Also, see this article with a Q&A session with Aretha’s doctor – setting the record straight. Click here.
“These are two distinct diseases. They are not the same disease”.
Why it is important to distinguish between Pancreatic Cancer and a Neuroendocrine Tumour with a primary in the pancreas? Quite simply, there are huge differences between Pancreatic Cancer and Neuroendocrine Cancer with a pancreatic primary – click here to read more.
A celebrity news outlet called TMZ managed to obtain and publish a copy of her death certificate – you can read their article and see the death certificate by clicking here. It clearly states “Pancreatic Neuroendocrine Cancer”. This is a contextually significant statement compared to the version of the original cause of death given by her physician and which went viral on the internet inferring that it was Pancreatic Cancer. Annoyingly, even though they managed to obtain a copy of the certificate, their headline still said Pancreatic Cancer (read the TMZ article here) – please feel free to comment on their site or email the TMZ contact here – firstname.lastname@example.org
I commented as follows: Wrong headline. The certificate clearly states pancreatic “Neuroendocrine Cancer” – a totally different type of cancer, different symptoms, different prognostics, different treatment, different problems. Huge error. Will you be updating it? They did not update it and comments have been turned off.
Interestingly the press had been saying Pancreatic Cancer since 2010 despite Aretha keeping her condition private, However, she came out in 2011 by releasing a statement saying she didn’t understand where ‘Pancreatic Cancer’ came from. See below.
I suspect she knew then it was Neuroendocrine Cancer, obviously from the fact that her doctor told her the surgery would give her another 15-20 years of life – that is certainly not a prognosis you are likely to get with Pancreatic Cancer.
A summary of her cancer experience since 2010 can be found here – not too detailed but useful background. She had major surgery on December 2nd 2010 (sounds like Whipples?). She wasn’t in good health at diagnosis, with media reports of years of chain smoking, alcoholism, obesity and crash-dieting. She was also diabetic for some year prior to cancer diagnosis. However, there is an update in 2019 hinting what Aretha was like as a cancer patient which is definitely worth a read – click here.
In one of the better articles from Forbes, they actually stated some words which resonate with the Neuroendocrine Cancer community (see graphic below) – however, the remainder of the article then goes onto to talk about Pancreatic Cancer and not Neuroendocrine Cancer so we lost a massive awareness activity due to the fixation and assumptions with anatomy.
Why do these mistakes happen?
The Human Anatomy vs cancer type even confuses so called respectable and authoritative cancer organisations. Big hitter organisations such as the American Cancer Society and the US National Cancer Institute fail to list an A to Z list of cancer with Neuroendocrine Tumors / Neoplasms / Cancer / Carcinoma under the letter ‘N’. Instead you can find Gastrointestinal Carcinoid (a term now at least 9 years out of date) and pancreatic and lung NETs under Pancreatic Cancer and Lung Cancer respectively, I’m sure there are other issues. I have contacted these organisations in the past and hinted there should be a standalone and grouped entry under ‘N’ but this has been totally ignored to date. While many news outlets have reacted to the rather misleading statement, medical writers will also take to the internet to research and will find the two ‘big hitter’ websites above and bingo. To a certain extent I see these issues more in USA than in any other country.
But in the meantime, please note that at least one big cancer organisation looking for changes to the way they display information on NETs as a result of Aretha (read it here) and some credit is due to Chris Nashville Lozina who many of you may know. However, action speaks louder than words and I will be monitoring their website to see if they actually make the changes they used to jump on the Aretha bandwagon. It should not be left to patients to do the running here. Fortunately it appears the NET Research Foundation has made some progress, read on.
The physician who quoted the cause of death which then went viral on the internet didn’t really do Neuroendocrine Cancer any favours – although we should credit him for leaving the word Neuroendocrine in there. That said, many lazy article writers and media have omitted the word not realising the significance of its meaning, not realising they were then quoting a totally different cancer. Interestingly her death certificated stated Pancreatic Neuroendocrine Cancer – that would have been a much better press release. Credit to Aretha’s physician who likes he is setting the record straight in 2019 – click here.
Shortly after the announcement of her death, some patients suggested she had “Carcinoid” but not only is that way off beam, it’s using a term which has been abandoned and isn’t good PR for the community. In some ways, the ‘C word’ is causing some of these issues as many physicians make a demarcation line between ‘carcinoid’ and other NET associated with one part of the anatomy, leading to bizarre terms such as “Carcinoid and Neuroendocrine tumours”.
We must stop saying that Neuroendocrine Cancer with a pancreatic primary is a type of Pancreatic Cancer. I think everyone agrees they are different but the KEY POINT is saying or not saying they are a type of Pancreatic Cancer. Saying they are a type of Pancreatic Cancer is not only playing into the hands of other Cancer organisations who want to claim the famous icons and their potential fundraising opportunities, but potentially a betrayal of Neuroendocrine Cancer awareness. Only my view though of course. The issue of the WHO ‘Blue Book’ on Neuroendocrine Tumours (compiled from the Neuroendocrine sections of each anatomical area ‘Blue Book’) should help when its published, hopefully this year.
Good news. Thanks to the work of the NET Research Foundation, some of this lost awareness from 16 Aug 2018 has been clawed back via a benefit concert to remember the 1st anniversary of her death. Some of the proceeds are being donated to NET Research Foundation, an indication of the acknowledgement of the correct diagnosis. Read more about this here. Plus good news about a new fund called “The Aretha Franklin Fund for Neuroendocrine Cancer Research – read more about this here.
In tribute to Franklin, Neuroendocrine Tumor Research Foundation CEO Elyse Gellerman has created the Aretha Franklin Fund for Neuroendocrine Cancer Research, with the blessing of the family. It was announced this week. “We wanted to create this fund so that those who wanted to honor Aretha’s memory have a way to support the research,” Gellerman said.
Finally – a must read – newly released details about Aretha as a patient – read more here.
RIP Aretha, Queen of Soul R.E.S.P.E.C.T.
Thanks for reading