THE BLOG
07/18/2014 04:32 pm ET Updated Sep 17, 2014

Raising Awareness of Appendix Cancer

Christina Applegate. Melissa Etheridge. Robin Roberts. The list goes on and on for celebrities who have successfully and publicly battled breast cancer. But not every cancer has a celebrity face to it or a specific ribbon worn on a designated month out of the year. There are cancers that don't get the level of funding that larger cancers receive, and sadly, kill thousands of people each year.

I'm talking about the cancer that I have been battling for three years: appendix cancer. Up until this year, the only celebrity associated with this disease was Audrey Hepburn, who bravely lost her fight in 1993. Recently, another famed person shared his appendix cancer story publicly, ESPN anchor Stuart Scott. Scott has been fighting this awful disease for the past seven years. He made headlines with his brave and heartfelt acceptance speech of the Jimmy V Perseverance award this week's ESPY awards. He spoke about not giving up, and beating cancer by how you lived. He was raw and honest and gave a speech that will be more memorable than any of the sports highlights he covered.

Yet it was a missed opportunity for appendix cancer, in my opinion.

Here was a captive audience of millions (not to mention the millions who have seen the speech posted across the Web) who could have learned about the disease that affects one in a million. I am in a Facebook support group, which has all of 1,500 patients and caregivers -- 1,500 from around the world! Appendix cancer is extremely rare, and there isn't the awareness or funding needing to find a cure. There are only a handful of appendix cancer specialists across the country that perform the "standard of care" treatment for this disease, which consists of cytoreduction surgery followed by a heated chemo bath in your abdomen. This surgery is called HIPEC, or more appropriately named MOAS (mother of all surgeries). I had mine in January of 2012.

I'm not saying that Stuart Scott should have shared the details of his treatment or prognosis (although he did mention four surgeries in the past week), but it would have been powerful for him to mention appendix cancer. There needs to be more awareness. Too often I am asked if I am fine because all they had to do was remove my appendix, right? But my disease is far more deadly than that. More commonly, appendix cancer isn't diagnosed until it has spread throughout the abdomen, resulting in a Stage 4 diagnoses. Sure there are many who have the HIPEC surgery and go on to lead healthy, rich lives. But there are also many who face recurrences, like I did last year. This cancer is a sneaky little bugger that likes to come back again and again.

There also isn't a foundation for appendix cancer. One exists for a specific type of appendix cancer, PMP, but there is no official community for the general disease. It would be great if Scott used his fame to help start one. It's amazing what Cycle for Survival has done for rare cancers, but there needs to be more support for appendix cancer specifically.

So for now I hope that this blog helps shed a little light on the disease too often misdiagnosed as colon or ovarian cancer. Appendix cancer might be rare, but to me it's my life. Which is going to be a long one, by the way.

For more information about appendix cancer, please visit http://www.pmpcure.org/.

Subscribe to the Lifestyle email.
Life hacks and juicy stories to get you through the week.