Our new website is LIVE and we are excited to share it with you:

https://accoi.org/

Sections include: ACC Facts, Treatment Options & Resources

We hope you find the content inspiring, helpful and modern!

To help patients make an informed decision in selecting doctors, ACCOI provides a list of physicians around the world: https://accoi.org/physicians-list/ 

We couldn't do this without your help. If you believe that your doctor should be on this list, email us at info@accoi.org 

Caitlin Deis

Director of Marketing & Communications

"ACCOI is proud to welcome Caitlin Deis to our Board of Directors. Caitlin brings an exceptional level of knowledge and marketing expertise to our organization and has already demonstrated these skills in the creation of a new website. She believes in the importance of creating patient and caregiver 'connections' by building a vibrant ACC community that understands and supports one another's challenges and hopes. With Caitlin's help, we look forward to broadening patient outreach to more of those living with ACC worldwide.  Welcome aboard, Caitlin!" - Pascale Reich, President

Hi y'all!

I am the proud wife of an ACC thriver and we live in Houston, Texas. About 6 six years ago my husband was diagnosed with ACC of the larynx and this began our journey. It really sucks to be apart of this club but through it, we've both met some of the most amazingly, brave and resilient people. For that, I am forever grateful.

The ACCOI community has helped both me and my husband navigate the complexities of this disease and inspired us to advocate for ourselves. I hope to continue passing along messages of hope and inspiration.



When I'm not serving ACCOI or working, I enjoy traveling with my husband. We've visited Alaska and Brazil most recently!

"I made a list of all the things I would eat once I got my taste back."

Meet: Shannon

On Thanksgiving day 2019 (I was 5 months pregnant and 26 years old) I noticed a lump under my jaw on the right side of my face. I chalked it up to a pregnancy symptom and let it be. In December I noticed it was still there so I went to the doctor. They gave me an antibiotic thinking I had an infected lymph node. 2 doctors and 3 antibiotics later it was still there.

November 2020 we sought out an ENT as my lump began to hurt when touched or when I would eat something sour. My ENT ordered a biopsy which was then sent to Mayo Clinic. December 2020 I received the call that I had Adenoid Cystic Carcinoma (ACC) of my right submandibular salivary gland.

My ENT wanted to see me the next day because of how rare ACC is. After that appointment we scheduled my tumor removal for January 2021. I had my tumor removed but pathology showed I had some perineural invasion. With the help of my radiation oncologist, tumor board and ENT I sought out a surgeon who would perform a full neck resection.

After the full neck resection I needed speech therapy due to trismus from multiple surgeries and I also needed PT due to the right side of my body now being weak from all that they took out from the second surgery. I continued to work as a special education teacher through this. I began treatment after my son's 1st birthday (radiation) until the end of May. Radiation was brutal: mouth sores and lacerations, extreme nausea and vomiting, loss of taste/bad taste, dry mouth, loss of half of my head of hair, burns, and I had to get a feeding tube. 

During all of this my husband worked and became my nurse. My mother helped me care for my son and my father helped get me to treatments which were an hour away.

I made a list of all the things I would eat once I got my taste back. My radiation oncologist hooked me up with a woman who was receiving treatments for ACC as well! He couldn't believe he was treating two ACC patients at once. I still talk to this friend to this day. It also tremendously helped me to follow ACC on Facebook and I joined their email thread. I went to the summer meeting of ACC patients in the Chicago land area.

I am part of Head and Neck Foundations Move-A-Thon as a team captain! I have had several clean scans. My goal is to participate in the Brave Like Gabe half marathon/marathon that goes on in Texas (hopefully next year) to honor my journey and health. 

On behalf of ACCOI, we want to thank Shannon for sharing her story! If you would like to be featured on our newsletter or social media, please email caitlin@accoi.org.

If you or a loved one needs support, please reach out to us via email at info@accoi.org or by calling our toll free number at 888-223-7983