Are You a Newly Diagnosed ACC Patient?

Below are some of the resources available that have been suggested by other ACC patients who were faced with many of the same issues we all have faced. See this as a "tool kit" for you to select those items that may be helpful for you, and just take what you like and leave the rest. We want to offer our collective knowledge and report our experiences one to another, but first and foremost we want to encourage each survivor to learn all they can and then work very close with their medical support team to do what is best given their specific diagnosis.


What is ACC?

We offer several ways for you to learn more about this rare disease and find answers to the many questions that come up when diagnosed with cancer. 


We have a Frequently Asked Questions page where you can browse the questions and then locate the answers that would be most helpful for you at this point. Our FAQ page will provide you with a good overview of medical information, treatment choices, ACC specific medical reports and much more. 


To answer the question "What is ACC?" we also have a more in-depth, multi-page document that is also available in PDF format you can easily download,  print, read, and share with others. This document is an in-depth review of the key issues pertaining to ACC.


Patient Support Services

We offer an ever expanding list of services for ACC patients who are looking for answers to critical questions, knowing there is a large  variety of needs for newly diagnosed cancer patients during one of the most difficult times in their lives. This page includes information about insurance, legal concerns, a physicians list, and contacting other ACC survivors.


Insurance and Financial Concerns

A new diagnosis with cancer can bring some major finacial concerns into a person life, and we have provided some very helpuf information in addition to some great resources in dealing with managing your insurance coverage. We also provide resources if you do not have adequate private insurance coverage.

Join our ACCOI Online Support Group

You can join our ACCOI Online Support Group, which is an email based group of around 1000 ACC survivors and supporters who ask  questions, post answers and share their discovery using email as a connection point. This group is moderated which means the messages sent out to the members are first reviewed by a moderator and only passed along to the members if they are in keeping with the guidelines of support and helpful information for the group.


Practical Ideas, Suggestions, Questions and Strategies

Below is some input from other ACC patients with suggestions for dealing with your initial diagnosis with ACC and suggestions for doctor visits, research, building a personal support team, managing relationships and coping with the many emotional issues you may face. All of these documents are in pdf format in order to make it easy for you to open, read, download and print so you can have them available for doctor visits or easily provide copies to others as well.


Questions to Ask Your Doctors
10 Practical Strategies for Dealing With a Diagnosis of ACC 
10 Common Misunderstandings About Cancer and ACC
10 Things Cancer Cannot Do
Getting a 2nd Opinion Without Leaving Home
Cancer Survivorship Care Planning
Financial Help Resources


Information on this website is provided for informational purposes only. Medical advice and services are not being offered. All information found on this website should be reviewed with a health care professional. Adenoid Cystic Carcinoma Organization International is not responsible for errors or any consequences arising from the use of this information.


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