- Adenoid Cystic Carcinoma
How did all start?
I started having pains in my ear in 1986. My ENT from childhood said I had air between my ears and to stop sniffing.
Do you already have a diagnosis? How long did it take you to get it?
I was diagnosed in December 1999 after 13 yesrs of misdiagnosis. TMJ, chronic ear infections and being a hypochondriac were the common disagnoses.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I've had 50+ hours of surgery, IMRT Radiation and Cyberknife. Intense surgery followed by radiation have worked the best for me.
What has been the most useful thing for you so far?
Having knowledgeable ACC doctors, being my own health advocate, and surrounding myself with support.
What have been your biggest difficulties?
Having a rare incurable cancer makes it hard for other people to understand that it might be dormant, and you might be NED but you always have the thoughts.
How has your social and family environment reacted? Have your social or family relationships changed?
My family relationships are stronger mostly, and certain friendships have deteriorated mainly because they didn't know how to handle it. And I understand.
What things have you stopped doing?
I cannot swim in the lake, sky dive...things that are unsafe for someone with veritgo or in the case of the lake...I have an earholio that's still healing.
What do you think about the future?
I think we all do.
So far, which years have been the best years in your life? What have you done during them?
The best years of my life have been the 20 years with my husband. We keep living life.
What would you like to do if you didn’t have your condition?
Skydive...haha because I can't.
If you had to describe your life in a sentence, what would it be?
Finally, what advice would you give to a person in a similar situation?
Live your life never let cancer live it for you. Educate yourself and be your own health advocate.