My name is Sharon Berlan. I was misdiagnosed in 2003 and correctly in 2004 with chordoma, a rare cancer of the neck and spine. Since then I have had 9 surgeries and countless procedures along with 8 weeks of Proton Beam Radiation Boston and one high dose session of IGRT for a new tumor location. The battle has been long and extremely difficult. I have major permanent side effects and am still dealing with serious issues which will require further surgery. I had to go on disability and my entire life has been changed by this disease.
I have learned there are very few experts that can get good results and that travel is often necessary. Multiple opinions are hugely important. Even then the options are frightening. There are no treatments currently other than surgery and radiation. Even with that the survival rates are disheartening.
Since the Chordoma Foundation was formed I have hope that treatments and a cure will be found quickly. Many of my friends have lost their fight. We are rare, and can feel ignored. But this is such a tenacious and serious disease that we need attention to be paid.