Looking back in 2018, I am so glad that we sought out the other opinions. Nerve wracking as it was, the process opened up other options we would not have known about.
Before getting a second opinion about cancer treatment, patients should prepare themselves to get a third. This is what happened to me in February 2014, and I am thankful it did. In hindsight, the experience points up some lessons about seeking other opinions — but first, some background on the case.
My cancer diagnosis came unexpectedly after many months of symptoms that mimicked a fairly common type of inflammation among seniors like me: temporo-mandibular joint pain, or TMJ for short. I was expected to respond to conventional TMJ remedies like dietary changes, physical therapy, anti-inflammatory pills and a dental orthotic device. All of that changed some time later when I reported a new problem — losing much of the hearing in the ear attached to my aching jaw.
MRI images of the head and neck revealed a large tumor on the right side, a mass that even I could plainly see as my new surgeon pointed to it on the screen of his cell phone and compared it to my left side. The surgeon and nurse we had been referred to nearby in New England were wonderful. My wife and I met them shortly after the biopsy had been taken by another doctor and sent to the pathology lab. The surgeon and nurse were experienced, calm, personable and conscientious. Above all, they took the time to answer every question we raised, even the hypothetical ones. They told us about our new team of doctors, nurses and staff. They scheduled more tests and appointments, and we waited for the biopsy results to come back.
As expected, the analysis of the biopsy tissue took five days, but unexpectedly it revealed an advanced, malignant tumor that had already grown from the salivary glands to the ear canal and beyond. It had wrapped itself three-quarters of the way around the major blood vessel to that side of my brain. It had invaded multiple bone and muscle sites on the same side of the head and neck. The surgeon told us that the cancer was deeply embedded and that there would be virtually no chance that surgery alone could remove it all. Radiation treatment and chemotherapy would be needed following surgery. Our medical team promptly expanded to include oncologists and radiation oncologists. There were more tests and procedures to be done, and we scheduled a date for surgery. Things were moving very fast.
By now, feelings of doubt began to settle in. My wife was the first to voice them, and I, too, felt conflicted and uncomfortable. Should we proceed directly down this express lane without more confirmation? The stakes were high. Could we be missing something? We asked the primary surgeon about this during our next appointment and were relieved when he said it was perfectly understandable. He recommended two other renowned cancer hospitals in the Northeast to consider.
We decided to contact the one in New York, and we made an appointment with a surgeon there for the following week. It did not dawn on me to arrange visits to both. In the meantime, a friend of ours who is a doctor in Pennsylvania had forwarded my records to a surgeon there. When we called that office, we learned that appointments for new patients were held one day a week, and this conflicted with the appointment we had just made for the second opinion in New York. We decided not to change that appointment but to add another one a week later in Pennsylvania. I recall feeling that time was critically short by then and that maybe we were getting a little carried away with all these opinions. Little did I know how important the third opinion would turn out to be.
The surgeon and nurse we met in New York a few days later were also wonderful. They were kind, caring, professional and incredibly knowledgeable. They spent hours with us summarizing the views of their expanded team of cancer specialists and going over our questions and concerns in detail. They gave high marks to the team and the cancer hospital we had come from in New England. They agreed with the overall plan for surgery first, followed by chemotherapy and radiation but with two major exceptions. First, they recommended a different approach to the jaw reconstruction which would not involve a bone graft from my leg. Second, they strongly recommended proton radiation, a new form of radiation that concentrated its rays more precisely on the cancer target and reduced collateral damage, especially in the head and neck.
We were practically numb by now. It sounded like this information was correct, but how were we to know? We talked it over with the doctor and nurse and agreed to have the New York surgeon consult with our first surgeon, whom he knew very well. Maybe the two groups could work something out without changing my surgery date in New England. Either way, we were free to choose the hospital we preferred for surgery. The team in New York was ready to help no matter what.
As we headed toward the exit, the building was dark, quiet and littered compared to the same scene several hours before. The cleaning staff was conducting an operation of its own. Removing wintry grit, papers and trash, they were getting ready for the next day’s surge of cancer-stricken families. Feeling adrift as we left, I also sensed a new dose of confidence. The second opinion had raised more complexity but also more promise.
Outside the cold night air was a quick reminder of February’s tight grip. It also reminded me how sore I was from the diagnostic test performed the day before in New England. A catheter had been inserted into the femoral artery in my groin and threaded up into the carotid artery in my neck to see how well the brain could function when the blood supply to the right side was briefly interrupted and then restored. The test had gone very well. The brain’s back-up mechanism, “the Circle of Willis,” had performed normally by diverting some of the blood flow from the opposite side. With the catheter withdrawn and the insertion point neatly plugged, I had been cleared to go to New York as planned. Slushy sidewalks, potholed streets and bumpy commuter trains were still painful to navigate, though. As the trip home went on, I felt more anxious about all the uncertainty ahead. I was also glad that we had an appointment scheduled for another opinion in Pennsylvania.
Driving there a week later was stressful. The first two teams still disagreed about the type of reconstruction surgery and the radiation treatment, so we hoped for a decisive third vote. Adding to our strain was the pressing time line. The surgery date in New England was only 11 days away. Over the next few days we met with four remarkable surgeons who had worked together as a team on cases like mine for 15 years. The first afternoon included consultation with all four of them, but most of our discussions were with the chief head-and-neck surgeon and the neurosurgeon. We would see the others again a few days later in follow-up appointments. Even so, we realized by the end of that first day that there was much more at stake than a potential tie-breaking opinion. This was, in fact, where we felt safe, secure and most confident. This is where we belonged.
The discussions here were more detailed than the first encounters we had before. For one thing, we knew better what to ask. The medical reasons not to use a bone graft or a metal plate for jaw reconstruction were compelling, and the nation’s largest proton radiation center was right here in the same hospital, one of only a dozen such centers in the U.S. Whether we chose to have the surgery done here or somewhere else, the surgeons would make sure that we could have the radiation done here. There were many subjective factors at work also. Early in my career, I had worked at this medical school for several years. Our extended families lived in this area as well as most of our closest friends. We knew this was home and not just an academic one.
There was still a big question, though. How soon could this busy team accommodate us on their surgery schedule? Late on the first day a scheduling clerk found conflicts for one or more of the core team members everywhere she looked, even several months ahead. She started making some calls. The next morning a message from a department administrator offered us a much better choice — just five days past the surgery date scheduled in New England. We did not hesitate to accept, and the surgeon in New England was incredibly gracious when I called him about the decision.
Looking back in 2018, I am so glad that we sought out the other opinions. Nerve wracking as it was, the process opened up other options we would not have known about. Somehow it all happened in time. The surgery took 20 hours, with a total of 9 surgeons. The chemoradiation started 10 weeks later once my skin graft had healed enough, and the treatments lasted seven weeks. We have follow-up scans performed several times a year — in Pennsylvania. So far, they have been clean.
What have I learned from all this about getting second opinions for cancer care? Here are a few factors for patients and families to keep in mind when they have recurring doubts.
Personal preferences We all have our own individual personality, and this affects our tendency to seek closure early or to “keep our options open.” We also have preferences about how much information we are ready to seek out and take in. Other characteristics can come into play, like risk taking vs. risk avoidance, cultural and religious beliefs, and tolerance for uncertainty. Whether to seek other opinions is a highly personal choice given the uncertainty, emotion and stress involved.
Doctor-patient rapport Much depends on the relationship between doctor and patient. Often a patient and family may sense or presume a lack of openness from their doctor regarding second opinions. We can be overly careful not to offend, and I think it is usually a mistake to presume either way. It was much better in my case to talk about this directly with the surgeons. Not one of our physicians seemed offended. They viewed our requests as collaborative, not competitive.
Family and friends Personal preferences about opinion seeking also vary among friends and loved ones. Different personality types, and different generations, may see this quite differently. In our case, it certainly helped to have strong support from all sides. Staying connected is challenging when faced with fear, inner chaos, and gloom. By staying connected, we found options that were not there before. I owe that to my wife, family and friends.
Logistics Time constraints and financial limitations can make it impractical to seek additional advice or to follow it in many cases. We were surprised to learn, for example, that a non-profit lodge operated by the American Cancer Society could accommodate us during the chemoradiation treatment in Pennsylvania. We heard about this during the initial visit and found it helpful to be part of that community during treatment.
Complexity of treatment options Some conditions are more unusual, and some therapies are more complicated than others. Prostate cancer is an example where potential benefits, risks and side effects can be notoriously difficult to predict and evaluate depending on the patient’s age, tumor type, and risk tolerance. Two friends or ours ended up getting 4 or 5 medical opinions before proceeding with other complex procedures. Both are glad they did.
In our case, seeking other opinions bolstered our knowledge and confidence. It also allowed us to choose among multiple teams of highly accomplished experts. Deciding to consult with other teams in the first place was a big step toward a better recovery.