Carcinoid Cancer Foundation Thanks Steve Jobs for Bringing about Greater Awareness of Neuroendocrine Cancers

Since the announcement was made earlier this month that Apple’s CEO Steve Jobs would be taking a medical leave of absence there has been significant media coverage about pancreatic neuroendocrine tumors, NET cancer, and carcinoid.  Although he has not talked publicly about the reason for his leave, it is because of Steve Jobs that the press has focused far greater attention on these rare cancers.  Critical needs in the carcinoid and NET cancer community are awareness and early diagnosis.  Over 90% of carcinoid/NET cancer patients are incorrectly diagnosed and treated for the wrong disease.  From the initial onset of symptoms the average time until proper diagnosis  is 5 to 7 years.  It is during this time that the cancer can spread.

Richard R.P. Warner, MD, Professor of Medicine at Mount Sinai School of Medicine in New York and Medical Director of the Carcinoid Cancer Foundation, told Ellen Greenlaw in an interview for WebMD, “The biggest obstacle in diagnosing carcinoid tumors is not thinking of them.” And the prognosis for NET cancer patients is better the earlier treatment is started.  According to Dr. Warner, “we now know that surgery and other treatments work much better when done early. Early, aggressive treatment of carcinoid tumors leads to a much better outcome for patients.”

Richard R.P. Warner, MD, carcinoid specialist

Dr. Richard R.P. Warner

Among the sources of recent news coverage that have included information about carcinoid and NET cancers are:

  • A series of three feature articles by Ellen Greenlaw for WebMD.com:

Understanding Carcinoid Tumor

What Is Carcinoid Syndrome?

Treating Carcinoid Tumors:  When Surgery Isn’t an Option

  • Reuters

Jobs’ Illness — Again More Questions than Answers by Maggie Fox

  • Bloomberg Business Week

Jobs’s Cancer Combined With Transplant Carries Complications by John Lauerman

  • The Huffington Post

Will Steve Jobs Return from His Leave of Absence? by Bianca Bosker

  • Los Angeles Times

Steve Jobs Medical Leave:  Experts Speculate but Apple Quiet

  • The Wall Street Journal

Apple Chief to Take Leave by Yukari Iwatani Kane and Joann S. Lublin

  • Los Angeles Times

Reason behind Steve Jobs’ Medical Leave Unclear by Thomas H.  Maugh II (with quote from carcinoid/NET specialist Anthony Heaney, MD of UCLA’s Ronald Reagan Medical Center)

Dr. Anthony Heaney

Dr. Anthony Heaney

  • CBS News.com

Steve Jobs’ Future:  Tumor Complications Not Uncommon, posted by David W. Freeman

  • CNNMoney.com, Fortune Tech

Steve Jobs Went to Switzerland in Search of Cancer Treatment by Doron Levin

  • Forbes

What Malady Has Sidelined Steve Jobs? by Marc Siegel

  • CTV in Canada

News coverage by health reporter Pauline Chan in which she interviews Maureen Coleman, President of CNETS Canada, and Dr. Simron Singh of Sunnybrook Hospital in Toronto, a medical oncologist who specializes in NETs

Pauline Chan, health reporter, CTV

CTV's Pauline Chan

To learn more about pancreatic neuroendocrine tumors, you can download a PowerPoint presentation by Michael J. Demeure, MD, MBA, Senior Investigator at TGen (The Translational Genomics Research Institute) and Director of the Rare Tumors Center at Scottsdale Healthcare in Arizona on the Carcinoid Cancer Foundation website.

We all wish Steve Jobs well.  And appreciate that, while not necessarily planned, he has helped to bring about greater awareness of carcinoid, pancreatic neuroendocrine tumors, and NET cancer.  This awareness is invaluable for current patients and those will be diagnosed with these rare diseases.

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6 Responses to Carcinoid Cancer Foundation Thanks Steve Jobs for Bringing about Greater Awareness of Neuroendocrine Cancers

  1. Nedda Walkup says:

    My neuroendocrine tumor is similiar to the kind Steve Jobs has. I cannot afford to go to Europe for treatment and the drug prescribed for treatment has not been approved by FDA; 177 Lutetium has been used in Europe for over 10 years.

    Going to Europe is not the answer. We need better doctors. We are 25 years behind Europe. Cut bureaucratic red tape (we do not need to reinvent the wheel just to keep someone at FDA in a job. Put more money in research.

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  2. Nedda Walkup says:

    I notice that Steve Jobs did not go to Dr. Warner at Mt. Sinai Hospital, New York. Or for that matter, any other medical facility in the US. Where does this fit into Health Care Reform?

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  3. Andrea Espinoza says:

    Steve Jobs is no dummy. Follow his example carefully. I have had 3 PRRTs in Europe. It has saved my life to date. PRRT is the standard of care throughout Europe for neuroendocrine cancer and has infinitely better results than anything here in the USA. PRRT stabilizes people’s disease and many often go into remission for years. It is criminal that PRRT is not FDA approved here in the US. Why don’t we have PRRT here in the USA? Because big drug companies are promoting and researching drugs which will make them more money over drugs like PRRT which are proven to work but are cheaper. There just isn’t BIG money in PRRT. It is given a handful of times via a 15 minute IV. Big pharmacy companies want to get people on cancer treatments that require that you take their drugs every day for months or years. The more drugs they can give you, the more money they make. This is sad but true.

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  4. Nedda Walkup says:

    I have a neuroendocrine tumor, carcinoid subtype, origin terminal ileum diagnosed in early 2005. I had major surgery with complications in June 2005 at Geo. Washington Univ. in June 2005. I am in a clinical trial for 177-Lutetium DOTA Octreotate at Excel Diagnostics & Nuclear Medicine in Houston, TX. This drug is considered treatment, and is not experimental. The trial consists of a series of four treatments at 6 – 9 week intervals. This drug has been available in Europe for a decade. Dr. Martyn Caplin at NHS Royal Free Hospital, London, recommended this treatment for my particular condition in June 2009.

    I went to London because I was not getting appropriate care in the US and information was being withheld. Dr. Caplin was my the first specialist I saw since diagnosis. As a result of my visit, I learned the cancer had spread to my bones and liver. My medication of Sandostatin was increased from 20 to 30 mg. and I was given a treatment plan. While in London, I was hospitalized 3 times before I could return home.

    When I returned home in June 2009, I expected to find a specialist to treat me and to find a clinical trial. Nothing exsisted until Dr. Delpassand started the clinical trial for 177LuDota in October 2010. I have completed two therapies and have two more before completion. This treatment is expensive at approximately $58,000.00, however, it was less expensive and traumatic to come here rather than go to Europe. Besides, we should not have to go to Europe.

    FDA needs to expedite approval of this drug so that Medicare and supplemental insurance will cover medication. Medicare does pay for the related tests. I am very optimistic. In 2005, within weeks of my diagnosis, Dr. Caplin spoke at a conference and referred to the drug as a “golden bullet” and a “magic bullet” meaning targeted therapy. This was the latest medication at the time. I feel much better after two treatments and eliminated a lot of the medication I was on previously.

    I have a prior diagnosis of post traumatic stress disorder that interfered with getting a prompt diagnosis. Doctors were loading me up with psychiatrict medications and Nexium, which suppressed the symptoms (or I didn’t care) and delayed a more prompt diagnosis. We need more research, better doctors, and better support from the medical community.

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  5. Mary A says:

    I wish Steve Jobs and his family well and pray for them and all Carcinoid families. I am a lung noid in the world of Carcinoid Cancer. Mine went, as usual, undetected for over 10 years and as usual, was mis diagnosed no less than 5 times.

    I wish he would re consider his position and go public with his Carcinoid Cancer journey. Most people do not know NETS are a Carcinoid family of tumors. The awareness is desperately needed.
    He could make a dramatic difference.

    A simple example of many many is Michael J. Fox and the headway for Parkinsons.

    Mary A Schmidt
    Carcinoid Survivor 09/2008

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  6. Aida says:

    I was found in 2011 with neuroendocrine carcinoma, and it was found in the uterus that was very surprising since normally is not found there. My gynecology-oncology told me that even that it was not usually found there in the last yr or two prior of mine he had another female patient with the same type of cancer in the uterus, a yr after she died. A few months after mine was found another female was found with the same cancer, all three were found at the same MD Anderson Cancer Center in Orlando.
    I had chemio/surgery the first yr and pet scans came negative, but
    even that did not show in the two pet scans, during the second yr I
    got it again in the same area, I just finished 25 exterior radiation treatments and in another month will have four interior radiation treatments, it have been very expensive, streesfull and not able two work with lots of the economical problems, but still fighting, at least to be able to see my son finish his postgraduate studies, so help mr God.
    If someone wants to talk to me about this you can email me at overseasre@cs.com and we can exchange information and symptons.—-Aida

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