I met my new oncologist today, and had a great appointment. We were encouraged (Vic was with me). He spent over 30 minutes with us, came in well prepared, had clear recommendations, listened to our concerns, and patiently answered all of our questions honestly with a positive and affirming attitude.
He is my new oncologist because I fired the old one.
My previous oncologist was super smart and highly capable… no doubt about that. But he talked all the time, rarely listened to us, and I left appointments feeling like a science project. I could have put up with all of that. But he would not communicate with me about test results. He had my pathology report (the one that said I had melanoma instead of lung cancer), for almost a month without letting me know. When I talked to him about that, he defended his decision to not call me by saying that he doesn’t like to talk on the phone, and won’t do email. He preferred to share with me in person, but didn’t want to move our appointment up. He went on to say that he would prefer that I not look up information about my cancer on line, and ideally, that I would not discuss my cancer and treatment with my friends who are physicians. From my perspective, that constituted a policy of non-communication. He will tell me what I need to know when he thinks I need to know it. And I should get over it.
I did. He’s fired.
If you are a physician reading this, I hope you learn two things from my experience: 1) “If you listen to your patient they will tell you what they need to know”; and 2) “No one – NO ONE – wants to be a patient. We are people who need your help, not an interesting case. We HATE being treated like projects!”
If you are a patient reading this, we have some lessons to learn, too. First, I cannot recommend more highly that you develop a relationship with a primary care provider who knows you as a person, understands your life and priorities, and can help you navigate through all this. Mine is awesome. He doesn’t know as much about cancer and its treatment at my oncologist, but he understands me. He is honest about what he knows and what he doesn’t know. He knows doctors, and he helps me understand how to relate to them in a positive and partnering way. I knew about the pathology report and about the brain tumors from my MRI before I met with the first oncologist because my primary care doctor has privileges in that system. He looked them up and shared them with me at my request. I was far better prepared for my meeting with my oncologist because my PCP prepped me. (He called me this morning 20 minutes before my appointment with a few helpful thoughts and a whole lot of encouragement.) My PCP loves me. If yours densn’t love you, (assuming you are lovable), go find one that does.
The second lesson for patients is that we need to think critically about our on-line research. I understand the frustration that my previous oncologist feels about patients going on-line to learn about their disease. I don’t have a medical degree. A lot of the info on line is old or incomplete. Cancer is unpredictable. People are unique, and respond differently, both physically and emotionally. Technology is moving at a crazy fast pace. It must be frustrating for docs to have to get their patients to unlearn bad info they got on-line to keep them from making poor decisions about their treatment.
On the other hand, because I knew I had melanoma and not lung cancer, I was aware of things like stereotactic radiation surgery (SRS). I had heard of drugs like Opdivo and Yervoy. I was aware of side effects that some people had through survivor stories that I read. I was better informed, and was able to make sense of some of the information that my oncologist was giving me.
I think the lesson to learn as patients is that Google is just Google. It is not Doctor Google. It is probably better at helping us define the questions we need to ask than it is answering those questions. My friend, Dr. JD Williamson, often says, “You get the answers to the questions you ask.” I want docs to guide my research, and I want them to know that I understand that they are the authority when it comes to answers, not some biased, outdated or commercialized website.
But I am still going to Google my treatment options. So New Doc, please keep me informed and guide that process. And thank you for being part of God’s healing plan in my life.