Over the last three years as a breast cancer patient, I have learned many things. I almost feel like I’ve become an overnight expert as I’ve become immersed in the world of breast cancer, but with all the medical knowledge I’ve retained, I’ve learned something much more important. I’ve learned that a breast cancer patient has a great responsibility to be proactive in her care. This epiphany came to me recently as I needed to make an important decision regarding my own health care. Until I was diagnosed with cancer, I’d never been an advocate for my health. I always did as I was told. I trusted my medical team. They had more experience than I did. They’d been through years of medical school and had specialized in the field of oncology. I was just a college graduate, a wife, a mother, and a grandmother. So, who was I to question their expertise? But, when I started to notice a decline in the attentiveness of my oncologist, I knew I needed to do something. I didn’t deserve to be treated poorly. It was imperative I receive the best care available. I wasn’t about to settle for less.
When I made the decision to fire my oncologist, I felt discouraged. I’d trusted him with my health for three years. As I thought back, I should have seen the warning signs. I should have noticed his lack of concern, his uncaring attitude, his failure to greet me as he entered my room, and other small indicators that he wasn’t really seeing or hearing me. I’d begun to feel that I wasn’t quite the cancer patient he preferred. Maybe I wasn’t sick enough, bald enough or weak enough to garner his attention. Perhaps he’d grown tired of me. I wasn’t expecting it. I thought we’d have a long-term relationship. I thought he’d always be in my corner. At first, I thought it might have just been me. Maybe I was having a bad day. Maybe I was grasping at straws. So, I gave him a second and third chance. I was very lenient, but at the same time, I was secretly watching and weighing his care. I felt I had to do it. He’d put me on guard. When things didn’t improve, I knew it was time to move on.
It felt like a bold decision to leave my medical team, and I was hesitant to find a new facility. I was familiar with my little team of doctors, the oncologist, the breast surgeon, and the radiation oncologist. I’d been with them for the past three years. They were my safety net. It was scary leaving them, but I had to make a change. A new cancer treatment center had just gone up in my neighborhood. It was much closer and more convenient, but it was huge! I don’t like change and I was fearful, but I knew this was the right thing to do.
As I entered the new cancer treatment facility, I was instantly greeted by multiple staff. Each of them took time to personally welcome me. When I met with my new oncologist, I was pleasantly surprised. She took time to get to know me before even discussing my health. As we talked, she looked me directly in the eyes. She was evidently not in a hurry because she sat beside me on the sofa in her office and leaned in as we talked. I could tell by her body language that she was really listening. When she would occasionally repeat statements back to me, I knew she really wanted to understand how I was feeling. The difference was amazing. I’d never experienced that before with my original oncologist. He’d always been in a hurry to get in and out of the exam room.
When I mentioned experiencing pain in my spine, the new doctor immediately set up an appointment for a bone scan. When I’d told my previous oncologist, he’d dismissed it saying it was more than likely muscle strain. Without even examining me, how could he know? I know my body. Something wasn’t right. I was glad I felt bold enough to speak up. The new doctor wanted to take a look for a possible recurrence of cancer. I was thankful she was aggressive in her testing.
I’ve given you small examples of the reasons behind my choice to change doctors although there were many more that led to my decision. Taking responsibility for my health care isn’t something I take lightly. Being actively involved in my care is important and hopefully, others feel the same way.
Here are some practical tips on how to be a proactive patient:
1. Know how you feel about your health. It’s important to guard your mind and reject negative health beliefs. Don’t always believe what you hear. Do your research.
2. Do what feels best for you. Don’t make your health decisions based on what others might think. You have the power to choose. It’s your body.
3. Don’t be afraid to speak up. Use your voice. Question your doctor. Get second opinions. Change health care providers if necessary. Don’t settle for substandard care.
4. Control what you can. You are the gatekeeper of your thoughts. Avoid stressful situations and toxic people. Shift your focus toward the positive. Stress wreaks havoc on your body. Find ways to surround yourself with peace.
5. Listen to your gut. That little voice inside you will send up warning signals when something’s not quite right. Learn to listen and address any issues that may be harmful to your health.
6. Do your homework. Spend some time doing research about treatment options. Get the best care possible and fight for it.
7. Keep an accurate and updated medical record for yourself. Get copies of all tests, lab reports, and doctor’s notes. By law, you have the right to have copies of your records. If you don’t have them, ask for them.
8. Be the squeaky wheel. Demand your rights. If you need to talk to the doctor and you aren’t getting timely returned calls, be persistent. If your insurance company isn’t approving your claims, file appeals. That old adage, “the squeaky wheel gets the grease” is true. If you want to be heard, make noise.
9. Jot down notes. If you have questions for your doctor make a list, it will help jog your memory when the times comes for your visit. Discuss items quickly and efficiently. Your doctor will be impressed that you didn’t waste his time or yours.
10. Don’t operate under pressure. If you feel pushed into making medical decisions and you’re not sure what to do, ask for more time. As long as you’re not in the middle of an emergency situation, you have a right to take time to think things through.
11. Be confident in your decisions. You can make the best decisions for your health care. Trust yourself but know you have the right to consult with others when necessary.
These tips can help you make wise, informed decisions. Always remember, you have a voice and you have the right to use it. If you aren’t pleased with your care, you can, and should, make a change.