Helping People Understand NET’s Awareness Day

11.10.2010

NET’s Awareness Day (Neuroendocrine/ Carcinoid Cancer) is coming up November 10th.  I thought would do a post on symptoms of Carcinoid syndrome (caused by NET cancer/Carcinoid tumors). Along with that how it is so often miss-diagnosed as IBS or Crohn’s disease.

Most of the early symptoms are really non-specific and can be easily misdiagnosed which is why they fail to catch it early. However as time goes on and traditional cures for IBS & Crohn’s fail to work. The patient gets even more ill and the doctor has a choice. He/she can continue to search for the real cause or as in most cases they just continue to treat as IBS and or Crhon’s.

Many people go for 5 years or more (in my case it was 6 years) before being properly diagnosed. Most are stage 4 by the time they are diagnosed, and by that time it has spread to distant regions. There is no cure for Neuroendocrine/Carcinoid Cancer by the time it has spread. The reason most are stage 4 and it is caught so late is because doctors don’t look outside the box. They don’t want to think maybe it could be something else more rare.

The reason most doctors do not bother to look into more rare causes for symptoms is one thing they hear over and over in med school.

“If you hear hoof beats, think horses, not zebras.” They are taught it is generally more productive to look for common rather than exotic causes for disease.

Most of the time people are finally diagnosed when they have Carcinoid Syndrome (after it has spread). The syndrome symptoms can actually be very alarming and scary.

Carcinoid Syndrome Symptoms:

  • Flushing
  • Diarrhea
  • Heart valve lesions
  • Cramping
  • Telangiectasia
  • Peripheral edema
  • Wheezing
  • Cyanosis
  • Arthritis
  • Pellagra

I was going to explain all the symptoms, but there are sites out there that would do a much better job at it. There are so many websites out there now dedicated to helping people with Carcinoid cancer (just wish there were more doctors). When I was first diagnosed there was very little information out there.

The website I am using for this is CarcinoidLink. It is set up specifically to help people understand Carcinoid syndrome and how to manage it. Also it has downloadable pages for people to track symptoms so they can take them in to show their doctor. Helps them know how the therapies are working or not working.

The biggest reason I wanted to use it for this post is because it is easy to find information and easy to understand. Here is the link.

Carcinoid Link:

http://www.carcinoid.com/patient/understanding/carcinoid-syndrome-symptoms.jsp

Please…..

Check it out and feel free to ask questions. Email me if you like. The more understanding and awareness we get out there about this the more doctors will educate themselves. They will have to take it more seriously. With education they will be able to recognize it and maybe treat it in people before it becomes stage 4.

Neuroendocrine/Carcinoid Cancer is a horrible disease to live with. Right now here in the US we only have a handful of specialists and very few therapies to help us. If this were Europe we would have so many more options. They have therapies and procedures to prolong life that have been used for 10 years or more, that here in the US are just now in clinical trials.

I know so many who have paid to go over seas for treatment because of the limited options here. Most would not be alive today if they did not go. The therapy I am referring to is called PRRT (Peptide receptor radionuclide therapand) requires 3 trips to Europe. Each trip costs 10,000 US dollars. Most that I know have done fundraisers to go (some have used their own money if they had it). However this is not an option for most.

Over the past 2 years I have seen so many (10 or so) die from this. Some I knew some I just knew of. Being this is a rare disease you kind of seek out others who have it. It is like our own community and when one of us Zebras (as we call ourselves) dies it really affects the rest of us.

We do our best and live life to the fullest. Our ribbon is zebra striped (as you can see above) for the zebra. Last year I made this graphic and it is true. Our stripes do make us unique. We are a proud few and we are survivors.

I made this graphic last year and it is true. Our stripes do make us unique.

21906stripesmakeusunique

  • Sharon Larsen

    Good post Danica! Thank you for helping to spread the word on our disease!