When first diagnosed, it’s normal to want to learn as much as possible about melanoma, your diagnosis, treatment options, and ongoing research. Learning more about your condition can empower you to ask the right questions, make the most of your interactions with your care team, and can help guide your decision making. But where do you start and what sources of information can you trust?
The melanoma treatment landscape is changing rapidly due to advances in research, because of this it is important to seek out a doctor who treats many melanoma patients. This is especially true for patients with rarer melanoma subtypes.
Your friends and family play a critical role as part of your team. They can support you in many ways, such as providing emotional support, going with you to appointments, and more.
Understanding what your insurance will cover and what you’ll be responsible for as out-of-pocket expenses can be substantial. Your insurance network may also influence or direct what facilities you go to and what doctors you see.
Compiling test results, pathology reports, treatment summaries, and other notes into a binder or folder can help you stay organized, better understand your diagnosis and treatment plan, and manage your finances. Keeping your own copy of these records is also helpful should you seek a second opinion or see a new doctor.
Many people diagnosed with a serious or rare illness – such as melanoma – want to get a second opinion on their diagnosis and/or their treatment options. In melanoma, because of the fast-moving pace of research, second opinions can be a critical step – giving you a different perspective needed to make the best, most informed decision for you. This is especially true if you are not being seen by a doctor who regularly sees patients with your type of melanoma.
Before you start to make treatment decisions, you should get up to speed on all of your options – including clinical trials – that might be a good fit. This is particularly important for patients with advanced stages of melanoma. Not all doctors will bring up clinical trials, so it is important that you ask about your options.
Sometimes, you may want to talk to someone who ‘just gets it,’ and no one can understand what you’re going through unless they’ve gone through it themselves. From online support communities like MRA’s Melanoma Exchange, to in-person events in your community, and peer programs – there are many ways to tap into this vibrant community.
Throughout your journey with melanoma, few relationships are more important than the bond between you and your doctor. You are a team, and teams work best when the communication flows freely in both directions. As a patient, you want care that is not only tailored to the unique feature of your disease but also to your personal needs. For example, do you want your doctor to explain the science – or reasoning - behind each procedure? How active do you want to be in making care decisions?
From the moment you learn that you, or someone you love, has melanoma, you will face a variety of challenging decisions and at times, overwhelming circumstances. Learning to live and manage this new normal will take time. Throughout your journey with melanoma, it’s important to listen to your body, give yourself some slack, and to remember that you are more than any diagnosis.