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The Importance of Being an Engaged Patient with a Rare Cancer

ROS1+ cancer is not a common cancer. It occurs in approximately 2% of non-small cell lung cancers, and occurs with similar frequency in cancers that start in many other organs. When you have a rare cancer it is critical that you become an active and engaged patient.

Not all cancers are the same

A cancer diagnosis is often accompanied by feelings of anxiety or fear. A good way to deal with these understandable emotions is to realize that not all cancers are the same–your outcomes cannot be predicted by the media and statistics about cancer as a whole, or even just lung cancer. Different types of cancer have different treatment options, and your ROS1+-driven cancer is unique to you. To fight the negative emotions, build your knowledge of your cancer. Collect accurate and specific information from credible sources.

What does being an engaged patient mean?

Being an engaged patient is about taking control of your cancer. Many people automatically believe their doctor knows everything there is to know about cancer and can help with any type of cancer you may have. This is simply not true. There are so many types of cancer, it is impossible for all doctors to be well-equipped to treat every type of cancer.

Your cancer team includes you

You need to be in the driver's seat for your cancer treatment and surround yourself with the best cancer team you can access.

Treating cancer is like a team sport. It is important to have a cancer team that you trust and value, and that includes people familiar with ROS1+ cancer and its treatment. Cancer centers have different specialities and capabilities when it comes to treating cancer. Many primary care physicians, general oncologists, and even lung cancer specialists have never met a ROS1+ cancer patient. Don’t assume your doctor is familiar with ROS1+ cancer; ask as many questions as you can to learn about your doctor’s experience with it.

If you feel your doctor is not listening to your concerns, or is not knowledgeable about ROS1+ cancer, consider seeking a second opinion or asking your doctor to consult with an experienced ROS1 expert clinician. At the end of the day, you are the one making the decisions because you are the one who has the most to lose.

Doctors care very deeply for their patients, but no one has more stake in your cancer care than you do. It is critical that you understand all of the options and make the decision based on the information coming from your trusted medical team.

Getting peer support

With a rare cancer like ROS1+ cancer, your care team should include other patients and caregivers who are dealing with your specific type of cancer.

Online groups of patients and caregivers share their first-hand knowledge and lived experiences with cancer symptoms, treatments, side effects, and clinicians. These groups also know the importance of access to information from experts in specific cancers. That’s why The ROS1ders’ website seeks to translate the most current information from these experts into helpful information for you and your clinicians.

What should you do to become an engaged ROS1+ cancer patient?

To take control of your cancer treatment, you can do several things:

  1. Ask your oncologist the right questions. We compiled a list of questions you should ask your medical team. Read through these and bring them to your next appointment.

  2. Find the right cancer center for your specific cancer. There are many ROS1+ cancer experts around the world. Ask your doctor to contact one of them to learn more about your cancer.

  3. Find the survivors of your type of cancer and connect with them. The ROS1ders was founded in 2015 by a small group of ROS1+ lung cancer patients. We are now the largest collection of ROS1+ patients and caregivers in the world, with hundreds of members from dozens of countries. Connect with our community today.

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