Being an Empowered Patient
Last updated: June 2023
Lung cancer patients should be empowered to have a voice in selecting the oncologist or surgeon to lead their healthcare team. I spoke with an old friend today that just went through a series of treatments for his cancer. He mentioned that he never "clicked" with his oncologist. And he was not fully comfortable with the treatment decisions his oncologist made. He said it was partly personality and partly the inability of his oncologist to explain what to expect. I told him I felt bad that his year-long treatment regimen was made more challenging. He mentioned that the doctor told him he had a 35% chance of recurrence. He would have preferred to hear he had a 65% chance the cancer would not return.
Communicating your needs
In my case, I wanted to have a voice in choosing the surgeon to perform my lobectomy. My primary care physician spoke with me about the different surgeons in the Division of Thoracic Surgery at Massachusetts General Hospital.1 As a world class hospital, I was confident that all the surgeons were excellent. We considered qualifications, experience with my type of cancer, but we also talked about personalities. My doctor recognized that the personal fit was as important to me as the skill of the surgeon. He knew that I was a patient that would ask questions and want to have a surgeon with patience to be able to speak with me about what to expect. And have compassionate bedside manner. Patients should be empowered to be involved in their care.
Choosing a surgeon should be a joint decision with your doctor. In my case, my doctor (Dr. Douglas Mathisen) and I felt that was the best fit2. Not only was he the Chief of the department and extremely skilled surgeon, he was a super nice guy who spent a lot of time explaining things to me. The personality fit made a huge difference in making this scary experience seem less stressful. Dr. Mathisen would draw pictures on his whiteboard showing what he was going to do, and all the steps of what to expect following the surgery. He really put my mind to rest about the entire process. And when he made rounds every day in the hospital post-op, he was a pleasant sight to see. His bedside manner was calming and caring. I am grateful my doctor helped me make the decision to work with Dr. Mathisen.
Be your own advocate
I may be fortunate that I have a great relationship with my primary care physician and have good insurance, but I feel strongly that every lung cancer patient should have similar experiences in their care. Every patient should be empowered to be a self-advocate in determining their care. While some may just want to let the process play out without input, I recommend talking to your doctor about your choices. Ask a lot of questions. Have a spouse, partner or friends join you in the conversation. Tell your doctor about your preferences. Hopefully find a surgeon who not only makes you comfortable about his/her skills, but also be someone you will be comfortable with before and after the surgery. Hopefully you will be able to find that perfect combination.
Don’t be afraid to ask a million questions about what to expect with your cancer treatment. It’s your life and you need to be your own advocate. This goes for all aspects of your treatment journey. Empowered patients will better understand how to navigate between the many players in the healthcare system including family, physicians, nurses, health insurers, pharmacists and more. Having been through the cancer experience, I can say without hesitation that choosing Dr. Mathisen as my thoracic surgeon was the best decision I made. Make your own decision based on your personal needs.
Happy Lung Cancer Awareness Month! What does self-advocacy mean to you?