Our Story

For over 12 years, I had experienced intermittent pain on the right side of my neck. I had seen a "world famous" doctor in 1996 who assured me that I did not have cancer and he couldn´t find any growth. He said to come back only if the pain increased dramatically…it never did.

In June 2004, I could feel a lump at the site where I had pain. An otolaryngologist found a 1 cm tumor in my parotid gland that we hoped was benign. Unfortunately, the biopsy came back positive for adenoid cystic carcinoma (ACC)…the "worst-case" scenario. At the time, I was 38 years old, happily married and the mother of 4 young boys, who were ages 9, 7, 4 and 1. Our world turned upside down and inside out!

We frantically looked for information about ACC on the internet and were lucky to find Adenoid Cystic Carcinoma Organization International. This website provided a great deal of information and a large internet support system.

I had surgery at the Massachusetts Eye and Ear Infirmary in July 2004. I had a full parotidectomy on my right side including removal of the lower branch of my facial nerve. I returned home with a new, quirky-looking smile and the prospect of 33 days of radiation.

I completed 66Gy of radiation at the Massachusetts General Hospital in October 2004. Radiation was definitely worse than I had anticipated…but we made it through with the enormous support of family and friends who dropped off meals, watched after the boys and kept our spirits up.

Now, more than one year after treatment, I still have bi-monthly check-ups and regular MRIs and chest x-rays. There is terror surrounding each new test. We are cognizant that there is no finish line…adenoid cystic carcinoma is a chronic condition.

During my treatment, my husband, Jeff, spent a great deal of time trying to find out what scientific research is being conducted for Adenoid Cystic Carcinoma. Unfortunately, as with most rare diseases, there is frighteningly little research being done. So throughout 2005, Jeff and I spoke with researchers around the world and leaders of other nonprofit research organizations to determine what we could do to help. Through the wisdom, guidance and compassion of others, we realized that we could start a foundation aimed at improving therapies and accelerating a cure for ACC. Thus, the Adenoid Cystic Carcinoma Research Foundation (ACCRF) was established in December 2005.

Through the generosity of ACCRF supporters and the brilliant work of our network of researchers, I intend to watch my delightfully loud, funny and adventurous boys grow up to have families of their own. And through the efforts of ACCRF, we want to ensure that I, like thousands of other ACC survivors, will get to sit on a rocker in my old age and enjoy watching the sun come up.

Marnie Abbott Kaufman
February 2006