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:
- Stages of Disease: Newly diagnosed patients need to orient themselves to their new normal. Patients who have had their primary tumors treated with surgery and radiation must begin a lifelong process of disease monitoring. And those patients who develop advanced disease must deal with additional considerations.
- Treatment Options: Depending upon a patient’s situation, different choices and combinations of choices among surgery, radiation and systemic therapy come into play.
- Reference Resources: Many patients rely upon the ACC Physicians List to find knowledgeable doctors. Peer support and patient events can be important sources of friendship, advice and education. And patients with advanced disease often rely upon our clinical trial listings of Completed Studies and Open Studies.
- Research Interest: Some patients are satisfied with a simple explanation of ACC while others want to delve into the overall research landscape, the molecular targets, the funded research projects and the key journal articles.
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.
To learn more about the biology of ACC, aspects of the patient journey and how it can be treated, please review our list of previously recorded Patient Webinars.