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NETs Becomes Newsworthy

Posted by @hopeful33250, Mar 17, 2018

For many years, when a celebrity is diagnosed with a disease that disease gets some newsworthy status as with Michael J. Fox and Parkinson's. However, NETs or Carcinoids, being rather rare, do not generally acquire such status and therefore does not seem to become newsworthy. However in today's paper there was a story about a celebrity, Irrfan Khan, being recently diagnosed with a NET. Here is a link to the article, https://www.clickondetroit.com/entertainment/life-of-pi-star-irrfan-khan-reveals-he-has-a-rare-tumor

Star Irrfan Khan tweeted Friday that he has been diagnosed with a neuroendocrine tumor. As you may know, he starred in Life of Pi and Slumdog Millionaire.

There is mention of Mayo Clinic and their explanation of NETs. While Irrfan Khan does not reveal the location of his NET or anything about his treatment, I thought you would all be interested in this news. I am sure that we wish Irrfan Khan well in his treatments and his adjustment to this unusual diagnosis and it is my hope that his fans do respect his privacy in this matter.

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REPLY

I noticed this as its on many of the NETs boards and groups. It would be nice to have a celebrity spokesperson shine a light on NETs.

@tomewilson Yes, I so agree. A rare disease like this one could use a spokesperson who can bring attention and perhaps research and money to the table to help all of us!

Teresa

Hello to all in our NET community:

As NET, a rare form of cancer, has once again become newsworthy with the passing of Aretha Franklin this week. I wanted to share with you this post from Dr. Len's Blog. Dr. Len is the Deputy Chief Medical Officer for the national office of the American Cancer Society and he is writing about the death of Aretha Franklin who passed away this week from NETs in the pancreas. It is a great article which once again tries to educate the cancer community about the difference between NET and regular cancer. Here is the article and here is the link where you can find the article, http://blogs.cancer.org/drlen/2018/08/17/aretha-franklin-died-from-pancreatic-neuroendocrine-tumor-not-pancreatic-cancer-there-is-a-difference/

Aretha Franklin Died From Pancreatic Neuroendocrine Tumor, Not Pancreatic Cancer. There Is A Difference
August 17, 2018
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When is pancreatic cancer not pancreatic cancer? The answer: when it Is a neuroendocrine tumor. And that’s a source of concern for me, especially in light of Aretha Franklin’s death.

A woman who enjoyed a very special place in the hearts of many in this country and throughout the world, her death was bound to be covered extensively in the media. For those of us who are concerned about these things, much of the coverage was frankly wrong in my opinion when it came to describing the disease Ms. Franklin suffered with for seven years.

You see, she did not have pancreatic cancer. Her tumor may have been located in the pancreas, but the cancer Ms. Franklin had was different: it was what we call a neuroendocrine tumor (NET). It is not the same as the typical pancreatic cancer.

The typical pancreatic cancer is almost always fatal, and unfortunately life is too frequently short following a diagnosis. NETs can be cured, or if extending beyond the pancreas can still be associated with a survival much longer than typical pancreatic cancer. The treatment is different, the outcome is different, the cure rate is different.

What has driven me to share these thoughts with you was an email I received today from an NET advocate, someone who has been in touch with me about this topic in the past. Her point was well taken:

“Mrs. Franklin in her own words in 2011 interview stated ‘I do not have pancreatic cancer’ which was an accurate statement then and now. If ever a case is to be made to define neuroendocrine cancer by its own terms and not under any other cancer’s subgroup…surely today makes that argument even stronger.”

Let me make this even more relevant to me personally:

I received a couple of interview requests yesterday to discuss pancreatic cancer research and treatment. That’s not unusual, especially when someone well known is diagnosed or dies from cancer. Like many of you, I thought Ms. Franklin had pancreatic cancer and that’s what the reporters wanted to talk about. Other time commitments prevented me from taking the requests. After the fact, I am glad I didn’t do those interviews. If I did do the interviews based on the information I had at the time, I would have provided wildly inaccurate information about Ms. Franklin and her illness, just like so many others did.

And what about people with pancreatic NET who are trying to get accurate information about their illness?

If you were someone who had a pancreatic NET and were told to look at information for “pancreatic cancer,” you would come away with a much different sense of diagnosis, treatment, and prognosis than you would have, had you looked at the right information. In my eyes, that is not appropriate.

I am happy to report that our medical editors at the American Cancer Society have given this some thought and agree that our web information needs to address pancreatic NET separately from pancreatic cancer. So, a rewrite of our information on cancer.org about this tumor was already in the planning before the current news cycle.

Maybe it is time for all of us who communicate about cancer to increase awareness of what neuroendocrine tumors are all about. And maybe it’s time to be more accurate in the advice we offer and when we report on the cancer diagnoses and outcomes for people known to many of us.

As my friend said in her email:

“If ever an opportunity existed to dispel ignorance and medical confusion with regard to neuroendocrine cancer…would be the perfect opportunity and time to do it.”

For me, she makes an excellent point. There are a lot of memorials to Ms. Franklin. Maybe helping the public better understand the illness that she had could be one of them.

Our friends "Down Under" (Melbourne) are discussing NETs with great detail! Here is a news program where Aretha Franklin and NETs are discussed:

Seeking a cure for Neuroendocrine Tumors

In memory of Aretha Franklin, who just lost her life to neuroendocrine cancer of the pancreas, our CEO Simone Leyden speaks to 9 News Melbourne about NETs #LetsTalkAboutNets

Posted by The Unicorn Foundation on Thursday, August 16, 2018

Teresa

@hopeful33250

Our friends "Down Under" (Melbourne) are discussing NETs with great detail! Here is a news program where Aretha Franklin and NETs are discussed:

Seeking a cure for Neuroendocrine Tumors

In memory of Aretha Franklin, who just lost her life to neuroendocrine cancer of the pancreas, our CEO Simone Leyden speaks to 9 News Melbourne about NETs #LetsTalkAboutNets

Posted by The Unicorn Foundation on Thursday, August 16, 2018

Teresa

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When I was diagnosed 10 years ago, there was little information to be found on NET. My GI doctor who ordered the liver biopsy told me to research it on the internet. What I found and stuck in my head for a few years is that I would most likely live only another 4-5 years. Not only was that frightening but inaccurate information. Today, so much has been done to advance treatment of this disease. New meds, procedures, tests, support groups, blogs, NET communities and more. I was the first NET patient for both my primary care doctor and cardiologist and through me they are now aware of NETs. I look forward to increased awareness and accurate information published about this disease.

@hopeful33250

Our friends "Down Under" (Melbourne) are discussing NETs with great detail! Here is a news program where Aretha Franklin and NETs are discussed:

Seeking a cure for Neuroendocrine Tumors

In memory of Aretha Franklin, who just lost her life to neuroendocrine cancer of the pancreas, our CEO Simone Leyden speaks to 9 News Melbourne about NETs #LetsTalkAboutNets

Posted by The Unicorn Foundation on Thursday, August 16, 2018

Teresa

Jump to this post

@tresjur Thank you for sharing your story!

You have been an educator and a trailblazer for your medical team. I am sure that your doctors are more informed and aware professionals because of your input!

Teresa

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