Living With ACC

There is no single journey of an ACC patient. This rare and peculiar cancer impacts people in very different ways. Although it usually starts in the head and neck, it can start in many other places in the body. Some patients have surgery and never get a recurrence; many develop metastases that grow slowly over years; and yet others rapidly develop aggressive metastases. Fortunately, the scientific and patient communities have learned a great deal over the past two decades and they are here to support you in your life with ACC.

Although ACC patients live such varied lives, there are some common ways to organize their experiences and to help orient them:

An ACC diagnosis is scary and patients need to take it seriously. However, they also should recognize that some patients never get recurrences and many patients live very full lives with recurrences. It is possible and fairly common for patients to die with ACC but not from ACC. ACCRF’s mission is to permit all patients to rid their bodies of ACC or at least make it into a manageable, chronic disease. The amazing efforts of the patient and research communities are providing reasonable hope that we will get there.