Jan 31, 2013 - 9:09 am
Hi my name is Sarah and i recently saw a post for someone looking for help about information on survivors of Esthesioneuroblastoma. I have all the info you need ;)! According to Dr. Lin at mass eye and ear in Boston I am the longest living survivor where I received the Proton beam radiation to head and brain. I was diagnosed at 21 and am now almost 29! I was a grade 3-4 and the cancer stemmed from the dura in the brain to the bottom of my neck and worse surrounded and penetrated my left eye and orbit! I have a lot of health issues and plenty mental health issues that accompany my survival. I am not aware of any long term effects from the cranial facial resection, proton beam and photon beam radiation or even many if the effects from chemo. I suffer from PTSD, body dysmorphia and anxiety all occurring after my diagnoses. I keep telling the docs, all of them that something is wrong because I wake up everyday I'll, nauseous, tired, anxious, weak etc, and their reply is well there's no cancer! No crap, but there are plenty of other things wrong! Recently it was discovered that the proton beam radiation is thought to cause retinal bleeds in the eyes. Please watch out for this because blindness Will follow w/o treatment. My symptoms were dizziness, nausea and vommiting - but these are not usually cause for the doc to check the eyes!! I would like to talk to others w this rare cancer as I've only met one person in my life who was I'll w this. The journey still continues after diagnoses, although most docs fail to see the pain, mental and physical after treatment!! I would like to give my number to other survivors!!