by Dr. C.H. Weaver M.D. updated 10/2020
1 Choose Your Doctor Carefully
Surgeons, medical oncologists and radiation oncologists are the primary doctors involved with esophageal cancer and often work in collaboration. Pick your primary oncologist carefully, rely on people you trust including nurses and other health care professionals who make help with recommendations. Make sure your doctor is someone you feel comfortable interacting with and shares your goals. It’s also important he/she has a specific interest in esophageal cancer and has access to clinical trials.
2 Be Your Own Advocate
Inform yourself about esophageal cancer and it treatment before you see your doctor. Make sure you understand your stage of cancer, the range of treatment options, and the role of precision cancer medicines. All treatments are based on the stage and NGS-biomarker testing for precision medicines. Managing your cancer may be a long-term process so stay current with treatment advances and receive the CancerConnect Esophageal Cancer Newsletter.
An on line community can be a great resource to help find a doctor as well as to share information and learn about treatment choices with other individuals in your situation. CancerConnect will link you to esophageal cancer patients being treated at leading cancer centers.
4 Be organized
It’s not unusual for patients to be treated by multiple doctors. To stay on top of the treatment routine, it’s critical to record notes from doctor appointments, questions/answers for your physician, dates of appointments, test results blood cell counts, medications and dosing schedules, prescription refills and other information.
5 Bring written questions to your visit
A doctor’s visit is stressful, it is much easier to bring a list of written questions to ensure they all get answered and none are forgotten. Bring someone with you to take notes or consider using a recorder so you can listen and engage your doctor carefully. Being able to “replay the conversation is very helpful.
6 Make sure you understand the treatment outcomes
Your doctor should be able to tell you what you chance of survival/cure is if you elect to receive no treatment then explain how each proposed treatment improves upon that outcome. If you don’t know the expected outcome of no treatment vs the proposed treatment how can you possibly decide what to do?
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7 Strongly consider a second opinion
The more you can learn about your diagnosis and your treatment options, the better chance you have of receiving the best treatment. Getting a second opinion will help you understand ALL available treatment options, and provide reassurance to you and your family that you are receiving the most appropriate therapy. Evaluation at a cancer center that has an experienced esophageal cancer treatment team is especially important.
8 Ask about the role of precision medicines and Immunotherapy
Unlike traditional chemotherapy, which attacks any cell in the body that is rapidly dividing, precision cancer medicine aims to target specific genetic alterations that allow cancer cells to grow. Esophageal cancer often results from abnormal genes or gene regulation. The strategy behind precision cancer medicine is to define cancer driving mutations in the DNA and develop medicines that target mutation. By identifying the genomic changes and knowing which genes are altered in a patient, cancer drugs that specifically attack that gene (or the later consequences of that gene) can be used to precisely target the cancer and avoid affecting healthy cells.
9 Ask about clinical trials
Ongoing research is being conducted to find new treatments for esophageal cancer. When new treatments are discovered, they must be developed in humans. By learning about clinical trials you can identify opportunities that advance the treatment of esophageal cancer and possibly benefit your personal prognosis. Learn more about clinical trials.
10 Make sure you have an overall care coordinator
Everyone needs a single point of contact is responsible for your overall care. This can be your oncologist, your primary care doctor, or a specialized nurse navigator. Without a “quarterback” the potential for miscommunication, and frustration is considerable. Make sure you have one primary contact that is your advocate!