With A Spotlight On Jobs, Time To Talk About Cancer

Within each of us is a hidden store of courage, courage to give us the strength to face any challenge. Within each of us is a hidden store of determination. Determination to keep us in the race when all seems lost.

My incredibly brave sister-in-law, Bonnie, has been battling carcinoid, a rare neuro-endocrine cancer for five years. It has been a “no holds barred” journey of strength, courage and determination as she continues to beat the odds and thrive with this rare and bewildering disease. Learning about Steve Jobs cancer diagnosis and his subsequent death was deeply disturbing and frightening for Bonnie and for everyone who loves and supports her. I received the following email from Bonnie just a couple of days following Steve Jobs death. She asked that I share her email and the attached letter with as many people as possible. When you have a few quite minutes please read this beautiful article; Surviving and Thriving With Cancer, written by Bonnie for Askinyourface.com following her first surgery in August 2009. Bonnie is the most courageous woman I have ever known. I’m not a religious woman, but, I pray for Bonnie and a cure for this cancer everyday. – With love for Bonnie and so many others – Allison

Hi friends and family,

Many of you know that hearing of Steve Jobs death was quite hard for me. Contrary to what we hear in the media about his pancreatic cancer, he did in fact have neuroendocrine cancer. I thought this commentary helped explain it well, as well as help urge people to get the word out about neuroendocrine cancer (so people don’t continue to get misdiagnosed for years).
Sorry to be depressing, but thought it important to pass on.
Getting ready to head back to Germany in about 12 days…..
Love to you all, Bonnie

After seeing a friend in the hospital yesterday, I heard that Steve Jobs had resigned as Apple’s CEO. Both my friend and I have had the same kind of cancer Jobs has – but neither of us has pancreatic cancer, and despite what you’ve heard or read, nor does Jobs.

What he has is a rare cancer called neuroendocrine tumor, or NET, located in the islet cells of his pancreas. Jobs made this distinction when he first announced his illness and surgery in 2004. He said, “I had a very rare form of pancreatic cancer called an islet cell neuroendocrine tumor, which represents about 1 percent of the total cases of pancreatic cancer diagnosed each year, and can be cured by surgical removal if diagnosed in time (mine was).”

The media have shorthanded his condition and mislabeled it as pancreatic cancer. And they did and continue to do this even though Jobs was careful to point out that “when one hears ‘pancreatic cancer’ (or Googles it), one immediately encounters [the] far more common and deadly form, which, thank God, is not what I had.”

Is an NET “a rare form of pancreatic cancer?” In short, no. It’s a different disease, with a different course and prognosis. Any reporter with five minutes to spare, an Internet connection and a shred of curiosity could have learned the true nature of his illness.

I have an NET too (although not in the islet cells of my pancreas) and it spread to my liver, as doctors familiar with NETs believe happened to Jobs. Why, you might ask, is this journalistic lapse important? As the Journal of the National Cancer Institute wrote in 2008: “[M]any physicians lack experience with or education about neuroendocrine tumors as a result of inadequate attention to the subject both at medical schools and in training programs. As a consequence, the diagnosis is often not considered until the disease is advanced.”

The most galling aspect of all this is that an international convocation of NET specialists held near Washington in 2007 found that while NETs of all types occur more often than many relatively rare cancers including pancreatic cancer, historically, NET research has received 150 times less federal funding than pancreatic cancer.

Mislabeling Jobs’ NET as pancreatic cancer converts a teachable moment about his and my rare disease into another layer of fog, obscuring the need to learn more and do more about NETs. Right now, the U.S. is so woefully behind in the diagnosis and treatment of NETs that every year scores of Americans are sent by their doctors to Europe (as apparently was Jobs, who went to Basel, Switzerland) for long-established treatments that are still unavailable here.

As to Steve Jobs, I wish him well. Many in the Carcinoid/NET community are incensed that he has not done more to clarify his condition. I am not one of them. I don’t live to fight my cancer; I fight my cancer so that I can live, and I believe Jobs should have the same privilege.

It’s up to the media to get this story right. Every time someone reports that Jobs has pancreatic cancer rather than an NET, he is hammering another nail in Jobs’ coffin and mine, as public curiosity and concern are directed away from a disease we so demonstrably misunderstand.

Mitchell Berger with his wife, Peg Girshman. Berger has been fighting his NET for 12 years.

Courtesy of NPR.

Bonnie Witkin-Stuart bwitstu@gmail.com

You may also like:

Cancer In Your Face – Allison’s Journey

iThank You, Steve Jobs

Cancer Myth Busters

What Really Matters Most?

© Copyright 2011  Allison Stuart Kaplan  www.Askinyourface.com LLC

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Comments

  1. …..passing this on…..Good Luck Bonnie.

  2. Bonnie is indeed brave, Allison, and I pray for her too.

    Like it or not, it seems like here in the US many diseases are overlooked until there is a public face attached. Given this information I hope Laurene (I think that is Steve Jobs wife’s name) will either attach Steve’s face or go anonymously to jumpstart the financing sorely needed for NET. Have the authors of this letter/article considered sending it to any newspapers and/magazines? How about even People Magazine? It reaches tons of people.
    Is Bonnie and Mitchell and their spouses and families open to this?

    Love to you all.

    • Bonnie Witkin Stuart says:

      HI Debbie, Thanks for your support. I am definitely open to people magazine and/or any other high publicity publications getting the word out about neuroendocrine cancer. There are more and more cases each year (it’s no longer as rare as we’ve been previously told) and the symptoms go undiagnosed in most cases for YEARS! (and often after it has metastasized, usually to the liver, as it did in my case).
      Any ideas about how to go about this…I’m open!
      Thank you so much!
      Blessings and peace,
      Bonnie

  3. Dear ones a job well done. Keep it in the limelight hope health and happiness for all of you love jps

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