• Just Diagnosed?

    Patients who are struggling with an ACC diagnosis, or news of a recurrence or metastasis, have many questions to answer and decisions to make. Here are three steps worth considering based on what has been helpful to others.

    1. Find a physician and gather your support system

    Find a physician that you trust as your primary touch point for treating your cancer. This may be an oncologist, but it might be a family physician or other medical professional. Ideally, your particular treatment plan will be developed by you and your primary doctor, with input from a team that might include surgeons, radiation oncologists, medical oncologists and, in some cases, interventional radiologists or other specialists. The ACC Physicians List may help you find a doctor with experience treating ACC close to home.

    Friends, family, fellow patients and support groups can go a long way in providing you with love and emotional help and serve as another vital part of your support system. And you may wish to consider joining a peer-to-peer group such as the Yahoo Group that is moderated by our close collaborators at ACCOI. The information from peer-to-peer groups should not substitute for the advice of an experienced physician, but it may provide worthwhile perspectives.

    2. Create a personal treatment plan

    This website will help you learn about current treatment options, clinical trials and ongoing research. To help you navigate through that information, it may be helpful to think about gathering information, making treatment decisions and planning post-treatment monitoring using these steps. Note the content of this section may be useful to print in portions or in its entirety to bring to appointments.

    Step One - Assess Your Status Step Two - Consider Your Treatment Goals Step Three - Make Treatment Decisions Step Four - Develop a Monitoring Approach Step Five - Take Notes and Keep Records
    Personal Treatment Plan Steps
    Step One - Assess Your Status Step Two - Consider Your Treatment Goals Step Three - Make Treatment Decisions Step Four - Develop a Monitoring Approach Step Five - Take Notes and Keep Records
    Personal Treatment Plan Steps

    3. Accelerating a cure

    ACCRF is a patient-led effort to find and develop treatments for ACC, and there are many ways you can help!

    • Donate part of your tumor for research if you have an upcoming surgery. It is free, won’t interfere with your treatment, maintains your privacy and may bring us all closer to a cure. The tissue is most valuable if cooled or frozen immediately after surgery, so please ask your surgeon about tumor donation and complete the appropriate forms prior to surgery. Thank you for your consideration!
    • Consider volunteering or participating in a special event
    • For additional inspiration read some of the stories of our featured champions