Every lung cancer patient needs a minimum of two doctors: a surgeon and an oncologist. The surgeon will analyze your imaging studies and determine whether surgery is possible; if it is, he or she will perform the surgery. The oncologist will determine what other treatments make sense for you, such as oral medications or chemotherapy.
At this point in history, the only true cure for lung cancer is surgical. Unfortunately, not every lung cancer can be treated surgically. Even if your cancer is inoperable, though, the treatments the oncologist prescribes can help you live longer and feel better. Better medical treatments are emerging every year, and a medical cure for lung cancer may be right around the corner.
Both the surgeon and the oncologist should be specialists among specialists. You want a thoracic surgeon, and a thoracic oncologist; in other words, both should be experts on the part of the body that contains the heart and lungs.
When I was first diagnosed, the last thing I wanted was a new doctor. The pulmonologists and oncologist who had treated me in my community hospital seemed like incredibly nice people who knew what they were talking about. Plus, they had perhaps just saved my life. Probably the surgeon they recommended was great, and wasn’t the most important thing to move forward with treatment right away? I was weak and tired after ten days as an inpatient, and at first I just wanted to follow the path of least resistance.
Friends, relatives, and a primary care doctor insisted that I be seen at least one major cancer center. Honestly, it felt like overkill at first, but I went to Memorial Sloan-Kettering in New York because my primary doctor said so, to the Abramson Cancer Center at the University of Pennsylvania because my family and friends insisted, and to The Cancer Institute of New Jersey because there was a satellite center near my home with a highly recommended thoracic oncologist on staff.
The big difference I noticed at first was the doctors’ experience. The physicians I saw at these centers had seen hundreds if not thousands of other patients like me. They could explain the possibilities and their recommendations in simple, clear language.
The most important reason to see doctors at big, specialized cancer centers, though, is something I didn’t fully understand until months into treatment. The big centers have better access to new and experimental treatments. Sometimes standard treatments fail, and you need an educated opinion about what experimental drugs have the best chance of helping you. Moreover, things are changing so fast in the treatment of lung cancer that sometimes the best place to start is actually with a new or experimental treatment.
Don’t be intimidated by the big cancer centers. I got help in setting up appointments, but I also found that it worked just fine to simply pick up the phone and call. Everyone, beginning with the receptionist who answers the phone, should understand that you are dealing with a life-threatening illness and need to be seen as soon as possible.
I will reiterate: you need two doctors. When you call, ask for appointments with both a thoracic surgeon and a thoracic oncologist. You may be able to see both on the same day. I was slow to figure this out, and made extra trips.
Your encounter with the surgeon will likely be brief, intense, and life-changing. In the best case scenario, your lung cancer is operable, and the surgeon should be able to essentially cure it by removing the affected tissue, although you may also have adjuvant chemotherapy before or after surgery. Lung surgery is no small thing, and the recovery time may be four to six weeks, but your follow-up with the surgeon will be limited.
Your relationship with your oncologist, however, is likely to be important for the rest of your life. You will see this person every two to four weeks while you are undergoing intensive treatment. Even if and when you reach the milestone of five years cancer-free and are considered cured, you will continue to follow up with your oncologist one to four times a year. (This is why, in my opinion, a compassionate bedside manner is optional in a surgeon but essential in an oncologist.)
When you meet a possible doctor, don’t go alone. At the beginning, my partner came with me to every appointment, and we often brought an extra friend to help take notes. At the same time, we were choosy about who came along. I deliberately didn’t bring some very close friends and relatives who were knowledgeable and would have been more than happy to accompany me, but whose presence would have heightened my churning emotions.
I loved the oncologist I met at The Cancer Institute of New Jersey. He was smart, kind, and a good communicator. I learned more in my first appointment with him than I had learned during my entire hospitalization. He was also more than willing to consult with any specialists I might see elsewhere, and encouraged me to go ahead with my consultations in New York and Philadelphia.
Shortly after that, I saw a surgeon at Memorial Sloan-Kettering. It was exhausting to travel, to navigate the New York City subway, to wait in the waiting room, to have my vitals taken and recite my medical history over again. When I finally met the surgeon, it was, in fact, a brief and life-changing encounter: she told me she had reviewed my images and in her opinion there was nothing surgery could do for me. At this point I knew “inoperable” meant “incurable” and likely “terminal.” She left the room and I wept. My partner and my note-taking friend wept with me.
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