Aretha Franklin – another Neuroendocrine Cancer Ambassador we NEVER had

 

ARETHA RESPECT

On 16th Aug 2018, Publicist Gwendolyn Quinn tells 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.

There are huge differences between Pancreatic Cancer and Neuroendocrine Cancer with a pancreatic primary – click here to read more. 

pancreatic vs neuroendocrine

tmz aretha

Clearly he meant Neuroendocrine Cancer with a pancreatic primary. However, in the fast moving social media world, this is what has gone out with the lazier writers and editors abbreviating it to just Pancreatic Cancer, perhaps because they didn’t see the relevance of the word Neuroendocrine or they didn’t want to confuse the issue.   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.

However, a celebrity news outlet called TMZ has 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 – eric.page@kcrg.com

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.

Interestingly the press have 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.


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 would 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.

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.

THE HUMAN ANATOMY PROBLEM WITH NEUROENDOCRINE CANCER STRIKES AGAIN.  Read about other errors with celebrities by clicking here

Neuroendocrine Cancer is not a type of another cancer PERIOD

A Neuroendocrine Tumour is NOT

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 8 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 flimsy and misleading statement coming from the family quoting Aretha’s physician’s words “Pancreatic Cancer of the neuroendocrine type”, 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 – US NET patient advocate organisations must do more and must do it publicly.

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.

Some patients are suggesting she has “Carcinoid” but not only is that way off beam, it’s using a term which has been abandoned and is not really good PR for us. In some ways, the ‘C word’ is causing these issues as many physicians make a demarcation line between ‘carcinoid’ and other types of NET associated with one part of the anatomy.

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 Pancreatic 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.

Good news in 2019 though, a benefit convert to remember the 1st anniversary of her death will results in some of the proceeds being donated to NET Research Foundation, an indication of the acknowledgement of the correct diagnosis.  Read more about this here.

RIP Aretha, Queen of Soul R.E.S.P.E.C.T.

ARETHA RESPECT

 

Thanks for reading

Ronny

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Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had

steve jobs 2010
The last few years have reminded me that life is fragile

Steve Jobs died 5 Oct 2011.  RIP Steve, you certainly made a difference to the world of technology and that is still being felt today.  I have a number of google alerts setup and every day the emails arrive in my inbox. The longest email is always the Steve Jobs one, i.e. Steve Jobs is written about more than Neuroendocrine Cancer and other connected subjects. That’s interesting because Neuroendocrine Cancer is the type Steve had, not Pancreatic as is frequently reported.

There are huge differences between Pancreatic Cancer and Neuroendocrine Cancer with a pancreatic primary – click here to read more. 

pancreatic vs neuroendocrine

I’ve mentioned Steve Jobs a few times previously, mainly in my blog The Human Anatomy of Neuroendocrine Cancer. I wrote that blog when I was frustrated about the constant misreporting of Neuroendocrine Cancer as other types of cancer. Others included Nick Robinson (see blog The Devil is in the Detail) and Wilko Johnson (The Ecstasy of Wilko Johnson).  I’ve also suggested in my blog ‘Every Day is NET Cancer Day’ that we need high-profile patient Ambassadors and despite his death, Steve Jobs would have been quite a catch, had he been willing. Curiously, the same thing is happening with Dag Kittlaus (Siri creator) who was diagnosed with a pNET last year.  To add insult to injury, the 2018 death of Aretha Franklin is gong the same way.

A lot has been written about Steve’s cancer experience and much of it is full of ‘what ifs’. However, I’d like to focus on the facts that are known and we can be almost certain about. That said, the precise detail that we (as NET patients) might want, is probably only to be found in Steve Jobs’s medical documents. Many people say that Steve Jobs had a right to personal privacy and I agree, nothing I put here isn’t already in the public domain.

Diagnosis

How was it found?  In 2003, Steve was having a CT scan to examine his kidneys and ureter, as he had developed recurrent kidney stones beginning in the late 1990s. A suspicious lesion was spotted on his pancreas. To cut a long story short, he eventually had more specialist scans and then a biopsy which diagnosed a type of Neuroendocrine Tumour.  There are many mentions of Insulinoma, a pNET which is reported to have a 10% malignancy rate (ISI Book – Woltering et al). It isn’t clear whether Steve had any presentational symptoms of an Insulinoma at this point (i.e. hypoglycemia).  There is also some chatter online about his tumour being a Glucagonoma (another type of pNET).

Initial Treatment

Steve initially tried alternative medicine before having surgery 9 months after diagnosis. There are reports of his medical team urging surgery earlier and his biographer stated that Steve had later regretted this delay. One of his Doctors is reported to have said “Steve was a very thoughtful person. In deciding whether or not to have major surgery, and when, he spent a few months consulting with a number of physicians and scientists worldwide as well as his team of superb physicians. It was his decision to do this”.  He is reported to have gone on to have a ‘Whipple’ type operation in 2004.  It was only then, that his condition was made public.  During that operation, 3 lesions were reported on his liver.

Ongoing Treatment and Surveillance

Most NET patients enter this phase after their initial treatment, it’s also the period where you learn about the cancer and how best to live with it.  There’s not much written about Jobs’ illness between his surgery and his liver transplant but my research uncovered a useful timeline from Bloomberg and other sources:

June 12, 2005: Jobs talks about his fight with cancer during a commencement speech at Stanford University. He says he was diagnosed about a year earlier and that doctors told him he wouldn’t live longer than six months. The cancer turned out to be a form that was treatable with surgery, “and I’m fine now,” he says. Source Bloomberg.  {Author’s note:  an indication he had been told, or his doctors knew, it was a Neuroendocrine Tumor}

January 24, 2006:  Walt Disney chief executive Bob Iger knew early on that Steve Jobs’s cancer had returned and kept it a secret before it became public knowledge, a new biography of Apple’s late chief executive reveals. The day the deal was officially announced, Mr Iger said he was at Pixar’s headquarters for the ceremony when Jobs asked to go for a private walk. On a secluded part of the Californian campus Jobs put his arm around Mr Iger’s shoulder and revealed his cancer was back. “Frankly, they tell me I’ve got a 50-50 chance of living five years,” the Disney CEO quoted Jobs as saying.

2007:  Not much out there except that he was busy launching what might be regarded as Apple’s most successful and iconic product ever – the iPhone.

June 9, 2008: Jobs, while introducing the iPhone 3G at Apple’s developers’ conference, appears thinner and frail. The company blames a “common bug.”

July 21, 2008: Responding to concerns about Jobs’s appearance, Apple says he has no plans to leave the company and that his health is a private matter. Investors aren’t reassured, and the shares fall 10 percent.

July 23, 2008: The New York Times reports that Jobs has been telling associates and Apple’s board he is cancer-free. Jobs had a surgical procedure earlier in the year to address a problem that contributed to his weight loss, the newspaper reports, citing unnamed people close to the executive. The shares climb 2.6 percent.

July 26, 2008: New York Times columnist Joe Nocera writes that he spoke two days earlier on the phone with Jobs, who said his health problems weren’t life-threatening. Jobs declines to go on the record about the nature of his ailment.

Sept. 9, 2008: Jobs, introducing new iPod media players at an event in San Francisco, still looks thin. “Reports of my death are greatly exaggerated,” Jobs jokes. Munster says that while the CEO’s appearance is unchanged since June, “Just the fact that Steve Jobs was up there was a positive.”

Oct. 3, 2008: A posting on CNN’s citizen journalist Web site, called iReport.com, says Jobs has been rushed to the hospital after a “major heart attack.” The shares fall 5.4pc. The stock rebounds after Apple says the report is false.

Dec. 16, 2008: Apple says that Jobs won’t be giving his usual speech at the Macworld conference, renewing concerns about his health. Jobs had used the forum to introduce new products for 11 straight years.

Jan. 5, 2009: Jobs says he is suffering from a hormone imbalance, causing him to lose weight. Jobs vows to remain CEO during treatment. “The remedy for this nutritional problem is relatively simple and straightforward,” Jobs says in an open letter.

Jan. 14, 2009: Jobs gives up day-to-day operations to Cook until June, saying his health problems are more complex than originally thought. Jobs says he will remain involved in major strategic decisions. “I look forward to seeing all of you this summer,” he says in a letter to employees.

By this stage, his cancer is already starting to take its toll on how he looks.

The disease takes its toll over the years

Liver Transplant 2009

It is common knowledge that Jobs had a liver transplant in 2009 in Tennessee (he was on the list in California and Tennessee).  In between his Whipple and then, he appears to have lived (and worked) with his disease and it’s consequences. His issues appear to have been exacerbated by his excessive vegan diet/fads and the effects of the Whipple surgery (many of you will be aware of these effects). For example, he would spend weeks eating the same thing and then suddenly change his mind and stop eating it. He’d also go on fasts. His condition immediately prior to the liver transplant was said to be ‘poor’ and losing more weight (he had been noticeably thinner for some time).

Did Steve Jobs get ‘experimental’ PRRT?

Jobs took a second medical absence for roughly six months in 2009. It wasn’t until June 20th, two months after the fact, that the Wall Street Journal uncovered the fact that Jobs had undergone a secret liver transplant at Methodist University Hospital in Memphis, Tennessee. However, during that absence, Fortune reported Jobs also took an unpublicized flight to Switzerland to undergo an ‘unusual radiological treatment’ (PRRT) at the University of Basel for neuroendocrine cancer, according to Jerry York, the Apple director who died in March 2010.

Post-Liver Transplant

In 2010, Jobs started to feel sick again. He would lose his appetite and begin to feel pains throughout his body. His doctors would do tests, detect nothing, and reassure him that he still seemed clear.  In early November 2010, he was in pain, stopped eating and had to be fed intravenously by a nurse who came to his house. The doctors found no sign of more tumours, and they assumed that this was just another of his periodic cycles of fighting infections and digestive maladies.

Heres’ a great bunch of TV interviews (something Jobs didn’t do very often).  “The last few years have reminded me that life is fragile”.  Click here (worth watching the whole 10 minutes). His final TV appearance was in June 2011 to the Cupertino City Council about the acquisition of land for their new campus.  Worth watching some of it: Click here.

The End

In early 2011, doctors detected the recurrence that was causing these symptoms. Ultimately, he developed liver, bone, and other metastases.  He had a further extended leave of absence from his job before stepping down as Apple CEO in Aug,  Steve Jobs eventually died 5 Oct 2011.

steve jobs 2010
The last few years have reminded me that life is fragile

References

Notwithstanding the Pancreatic Cancer vs Neuroendocrine Cancer issue, I carried out my research mainly using two articles of the many you can find out there:

  1.  “And one more thing” about Steve Jobs’ battle with cancer
    This is a long article and totally fascinating.  Some of the evidence is presented using extracts from Walter Isaacson’s book ‘Steve Jobs’
  2. A Tumor Is No Clearer in Hindsight.  This article comes to similar conclusions than the one above but it’s shorter and easier to read. It’s from the New York times and was written after the dust settled on Jobs’ death (i.e. when more facts were available). There is also input to this article from NET specialists Dr Wolin and Dr Libutti.

  3. Apple chief Steve Jobs: Health timeline since 2003.  This article is from a UK National Newspaper (The Telegraph) but via US Business Publication Bloomberg.

Personal Summary

“A tumor is no clearer in hindsight” is a good summary on the basis that I would have liked much more detail!  During my research, I found many mentions of Insulin as stated above but only one or two mentioning Glucagon, a hormone associated with another pNET type – Glucagonoma. However, looking at this tumor type in the ISI Book (Woltering et al) and the Jobs diagnostic and treatment story, I have some doubts whether this was the precise tumor type. I have some other searches in progress hoping to find something concrete.

Thinking Differently There is no doubt that Steve Jobs was an amazing and very interesting character.  You just can’t see Apple being the Apple it is today without his intervention.  He was famous for being ‘unconventional’ and ‘thinking different’ and I get that element of his character.  I just can’t help thinking that perhaps he should have been more ‘conventional’ with this thinking and approach to treating his cancer. However, we just don’t know what advice he was receiving and what advice he accepted or rejected.  As for the ‘Pancreatic Cancer’ thing – I’ve said this before, I believe patients only say or interpret what their doctors say to them in regards cancer type.

“The most famous patient ambassador we never had”.  I don’t mean any disrespect by that, I’m just emphasising that we need so much more awareness of our cancer and a high-profile patient could do so much to help in this area. If he was so inclined, Steve would have been a fantastic advocate for Neuroendocrine Cancer and there’s an area where perhaps thinking different might be the way ahead. However, I have a suspicion that very famous people don’t really want to talk about their illness and Steve Jobs might even perceive that as a weakness.

And one more thing …….  you may also find this article useful.  It’s titled “And one more thing”