Not so rare after all!

November 10 was worldwide NET Cancer Day. In addition to writing my Let’s talk about NETS post, I read several other articles about neuroendocrine cancer that day and what I learned was quite astonishing.

When I was diagnosed with neuroendocrine cancer (NETS), I was told that it was rare and much of the literature about it seems to agree, but is it really? Is it actually rare, or is it just not very well-known?

You’ve heard of cystic fibrosis, right? And what about ALS (Amyotrophic lateral sclerosis), often called Lou Gehrig’s disease after a hall-of-fame baseball player for the New York Yankees who was diagnosed with ALS in the 1930s? If you hadn’t already heard of that one, I suspect that the famous Ice Bucket Challenge of July and August 2014 brought it to your attention. Unless you’re a fellow patient, however, I’m guessing that you’d never heard of NETS before you read about it here on my blog, but is that because it’s rare?

Let’s take a look at some statistics. I’m using numbers for the United States simply because they were the easiest ones to track down, but I’m assuming that the ratio would be similar elsewhere. In the US, there are

  • approximately 1000 new cases of cystic fibrosis each year
  • a little over 6000 new cases of ALS each year
  • an estimated 15 500 new cases of NETS each year

Do the math! That’s more than 15 times as many cases of neuroendocrine cancer as cystic fibrosis and more than twice as many cases as ALS! It’s also an average of more than 42 new cases a day or more than one every two hours!

So why is NETS not nearly as well-known as the other two diseases and why does that matter? It matters because doctors don’t detect what they don’t suspect and they don’t suspect NETS if they don’t know anything about it. Secondly, more research dollars go to higher profile diseases. According to the US Department of Health and Human Services, $49 million was spent on ALS research in the US in 2015 and $80 million on cystic fibrosis, but NETS wasn’t even on the report!

nets

I know you’d probably rather read about my travels or my Fashion Friday posts and they’re definitely more fun to write, but unfortunately, it falls upon patients like me to publicize and educate whenever and however we can. It might be easier if we had a Lou Gehrig, someone well-known to put a face to our disease, but that hasn’t happened yet. Our best hope so far was Steve Jobs, co-founder and former CEO of Apple Inc, but Jobs initially chose to reject his doctors’ recommendations and try alternative treatments, a decision that may have hastened his death in 2011. He was also very private about his condition which was, of course, his right, but he could have done so much good had he chosen to be a vocal spokesperson. The fact that the media, left in the dark by his silence, commonly reported that he died of pancreatic cancer rather than neuroendocrine cancer that originated in his pancreas, didn’t help our cause either.

Increasing awareness is a slow process, but I believe we’re making headway. In spite of the fact that it’s still not well-known, NETS is actually the fastest growing class of cancer worldwide! I believe that that’s because it’s being diagnosed more often and because improved treatments are allowing many of us to live longer. Our goal continues to be to raise awareness in both the medical field and the general public, so that research funds are made available that will lead to even earlier diagnosis and better treatment. It’s time for NETS to come out of the dark!

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10 Comments (+add yours?)

  1. Cindy Huddlestone
    Nov 19, 2016 @ 20:51:31

    Interesting, I too thought Jobs had died of pancreatic cancer. Knowledge helps us all be more aware.

    Reply

  2. dealingwithacc
    Nov 19, 2016 @ 22:16:38

    ALS definitely got notice with the ice bucket challenge going viral. I hope NETS gets a viral spark one day too.

    Reply

  3. Ronny Allan
    Nov 20, 2016 @ 01:02:21

    Check the math, 42 is more than 1 every 2 hours 😎. I also think we need to move away from the use of the zebra which is masking the real and more serious issue. I believe it’s one of the reasons it’s not as well known as the others, I. E. It’s not a particularly good ‘advert’ and not something people take seriously. Just my opinion.

    Reply

    • edebock
      Nov 20, 2016 @ 09:02:29

      You’re right! Math is obviously not my strong suit! I’ve made the correction.

      I know that you object to the use of the zebra, but I’ve actually found that it can be a good conversation starter. Perhaps that’s because animal prints are so common in ladies fashion. For example, I was at a clothing party just yesterday where a zebra print belt was on sale. One of my friends, who is familiar with the zebra as a symbol of my cancer, mentioned it and provided an opening for me to share a bit about neuroendocrine cancer with the others in attendance. It’s a little thing, but every little thing helps.

      Reply

      • Ronny Allan
        Nov 20, 2016 @ 09:30:33

        I understand all that but I believe need to target a different and much wider audience, particularly in the health communities. 100s of illnesses have vague symptoms, NETS are not actually unique in this respect. It’s such a narrow angled message. Additionally, most patients are using this symbol in what North Americans call a “cute” way the message has become misquoted and meaningless and in some ways confusing. For example, it is the disease which is the zebra not the person. It is the disease that kills, it is the zebra that kills. So the “cute messages” through dress, jewellery, tattoos, nail varnish, etc are making light of a serious disease message. I know I’m not alone on this view.

        Reply

  4. Ronny Allan
    Nov 20, 2016 @ 01:09:26

    Good work on the US stats Elaine, I’ve now tied this in with our convo on NCD Facebook post!

    Reply

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