Contributed by Jerome M.
When I was diagnosed with testicular cancer, I was scared. I didn’t know anything about it except that Lance Armstrong had it. He lived but would I? I was terrified to have the test, go to my appointments and get treatments. Luckily, I was able to talk to someone else about it. He talked me through it and I decided to become empowered instead of scared.
Educate yourself. I did my research. I talked with people online, in support groups and over the phone—people who had testicular cancer. I read all I could about the disease. This helped put things in perspective for me. I was able to get facts instead of being in my head full of worry and fear.
Take a notebook with you. When I went to my appointment, I took notes on what my doctor said. In between appointments, I wrote down any questions I had. However sometimes I was still overwhelmed. So I…
Worked with a patient advocate. Some hospitals have a division of people who help patients by attending appointments with the doctor. It helps to have a second set of ears as sometimes you feel emotional and cannot concentrate on what the doctor is saying, especially at the very first visit. If you cannot find a Patient Advocate, ask a friend or family member to come with you.
Don’t take no for an answer. What I mean by this is do not let the doctor rush you out of the office or gloss over any of the answers to your questions. You deserve to have your questions answered. They are not unimportant or stupid. If your doctor is too bothered to answer your questions, get another doctor. My doctor was great and took the time to answer my questions; but I have spoke with people who had doctors neglect to answer their questions, so be strong.
Get a second opinion. Always do this. Doctors are not gods. They don’t know everything.
Share your whole health history. Sometimes people keep secrets from their doctors—they have heard it all and dealt with so you don’t have to feel embarrassed. Admit any drug use you have, vitamins you take and surgeries you had as well as your family history. The more your doctor knows about you, the more he can support you with the best options.
Have a goal. A weird idea: a goal for my health? Yes. What is the goal? It might be: to eradicate the disease? Treat it? Have the symptoms under control? Your specific goal will allows you to better assess the treatment options as well as the frequency of the treatments that are best for you.
Know your insurance. Insurance is complicated. Some Patient Advocates do not go with you to your doctor’s appointment but instead help you navigate health insurance. Call up your insurance company and ask what gets covered and how much. Do you have to pay out of pocket and then get reimbursed later? Do you have a deductible? If you do not have insurance, negotiate your bill with your doctor. There are Medicare rates that you can ask for even if you are not on Medicare. Most doctors will work with clients who have to foot the bill themselves. Hospitals offer financial assistance. There are also federal grants and private grants available for certain illnesses.
Standing up for your health will empower you during your illness and help you to cope.
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