It is really hard to be diagnosed with cancer or love someone who is. This emotional journey will be life-changing. There is no right or wrong way to feel and every patient or loved one may react differently. Some patients will want to know everything with a take-charge attitude while others are simply overwhelmed by the diagnosis. Similarly, loved ones or caregivers may exert extra energy to research and find cures or treatments. Regardless, you are not alone and we are here for you
If you or someone you love has ACC, knowing what to expect can help you cope. Whether you’re trying to come to terms with this cancer diagnosis, going through treatment or grappling with fears of recurrence or death, there’s no right or wrong way to feel.
After your diagnosis, patients have a make a number of decisions about medical treatment. These decisions can be complicated by anxiety, unfamiliar words and a sense of urgency.
Here are a few tips from patients and caregivers:
Tips for the newly diagnosed & Caregivers
- Bring a notebook or recording device. If allowable, you can ask the physician to record the diagnosis and/or treatment plan. If not allowed, you can write notes in a notebook that you bring to every appointment.
- Write down questions before the appointment. In the moment, emotions can be distracting or create brain fog. By having the questions written down, you have a template to follow to make sure you get the correct information. ACCOI also provides a list of questions that you may want to use. (click to view list of questions)
- It’s ok to get a second or opinion. This is your life or the life of someone you love, you need to trust in the care team and their treatment plan. If you are curious what others might do, reach out to another facility or doctor. When setting up second or opinions, you will need to share your health record with those doctors. You can request a CD of your scans, as well as medical reports from your original facility. In the US, these reports must be provided to patients by law. They may also be available online via MyChart or on a patient portal.
- Moving forward, begin a journal and a personal file/folder with all your reports (and CD’s) for every appointment. Because you may choose to visit a number of different doctors, you’ll want your records in order.
- Trust your care team. Not only do you want to trust your care team but you want to believe they will provide quality care. That trust is built in appointments and in their follow up and follow through. Did they do what they said they would? Do they take time to explain things to you and your family? You can also look at their education and training; their publications or their reputation online.
Tips For Managing A Recurrence
- Give yourself 24 hours to cry, be sad, angry or numb. Once you reach 24 hours, dry your tears and get to work at finding a solution.
- Its ok to seek out a second or opinion again, or even change the hospital. This caused me a lot of anxiety but since my original diagnosis, things changed and I wanted to get the best care possible.
- Research and look for new treatment options.
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It’s important to remember that you don’t have to deal with this diagnosis on your own. Many patients are living very full lives with this rare cancer. Talking with people close to you or joining peer support groups or patient events can be a great comfort during your journey, and your treatment outcome is more likely to be positive as well.
