Navigating the World of Cancer Treatment: First Steps

Until you or a loved-one are diagnosed with cancer, you probably don’t think much about cancer treatment options. I know I didn’t. But when it happens, and once the shock of the diagnosis subsides, researching treatment options becomes your top priority.   In this post, I will explain how we got started on the path toward my eventual treatment regime, and share some of the lessons we learned along the way.

Let’s begin with what we knew at the time. The only fact we had was that the biopsy of the polyp removed from my vocal chord was malignant. That’s all we knew for sure. We had no idea how much cancer was in my body. We did not know exactly where the cancer was located, or whether it was limited or had already spread. And we would not know the answer to these questions until after a PET scan.  My ENT doctor arranged for me to have a PET scan at our local hospital,  It was scheduled for the day after I returned from my trip.

Now, let’s remember what was happening at the time (February 2017). I was on an adventure cruise with my daughter Krista, approaching the Antarctic Peninsula after crossing the often-treacherous Drake Passage. Debra was at home recovering from her Ground Hog Day experience as she came to grips with my diagnosis. Because we live in an age of incredible technology, Debra and I were able to stay in touch through text, email and FaceTime calls. We agreed that Debra would take the lead in researching potential treatment centers and specific Oncologists. Debra wanted me to be as free as possible to enjoy the adventure, which I greatly appreciated.

Debra started her efforts by first talking with a small group of good friends and asking for their input and advice. Some were in the medical profession, some had been through cancer themselves, and all were friends whose opinions and judgment we both trusted. Debra did not try to do this alone; she knew it would take a team. Our team was enormously helpful. To a person, they were ready, willing and prepared to help. Rather than just relying on their individual experience and knowledge, they leveraged their own networks to gather even more insights. It wasn’t long before a picture began to emerge regarding the options.

We recognized that we needed to make the following decisions:

  1. Should we continue with the plan to have the PET scan at our local medical center?
  2. Which Cancer Center should we select for treatment?
  3. Which Oncologists should we select to be on the team?

The consensus among our informal advisors was that there was no reason to not have the PET scan locally. Regardless of where we might go for further evaluation and ultimately treatment, the results of the scan would be readily available to the medical professionals.   So we confirmed that decision fairly quickly.

The decisions regarding which Cancer Center and which specific Oncologists were less straightforward. We quickly saw the interconnectedness of these two decisions.   We also learned how getting appointments with specific doctors would take perseverance as well as good networking.

Because we live close to a major metropolitan area, we have a number of reputable Cancer Centers within driving distance. We decided early on that we would limit our search to facilities with 50 miles or so. We would not need to consider options that would require long distance travel, overnight stays or relocation. We were lucky in this regard, because not everyone has this good fortune when faced with the need for cancer treatment.

There is a lot of information available about Cancer Centers. In fact, it is a bit overwhelming.  It takes time to search the web, find the relevant data and review it.  Debra found the personal experiences of friends to be important during this process.  The specific nature of your cancer should be considered when choosing your center and doctors. For me, that meant we wanted a team with extensive experience and a proven track record of successfully treating cancers of the head and neck. This consideration along with significant input from our network led us to focus our research on the Abramson Cancer Center at Penn Medicine (University of Pennsylvania) in Philadelphia.

We knew from my ENT doctor that treatment might include daily radiation treatments over a 5-8 week period. This factor caused us to continue to consider our local medical center as a viable option. But we knew that easier travel would not be a sufficient criterion; the local option would also have to offer comparable quality of care in order to be selected.

While I was viewing whales, seals and penguins, and making multiple landings on the Antarctic Peninsula, Debra was making numerous phone calls on my behalf. Based on her hard work and information gathering, we decided that we would seek appointments with Oncologists at both our local hospital and at Penn Medicine.   We agreed that we would seek appointments at other facilities ONLY if we were uncomfortable with both of these options.

We had received a recommendation for a local Radiation Oncologist. Debra was able to secure an appointment with him on the same day as my PET scan.  Arranging the appointments at Penn Medicine took a bit more effort. We learned that this large treatment center has a standard process for bringing on new patients. When you make the initial call as a new cancer patient, you are assigned a Nurse Navigator, who turned out to be a very important and helpful person. Navigating the complexities of such a large health care provider requires someone who knows their way around and how to get things arranged.

We had received a recommendation regarding specific Oncologists at Penn we to seek out. The recommendation came from a highly qualified and well-informed individual in the health care world; a good friend of a good friend.  We wanted to secure appointments with these highly recommended doctors. “Well, that’s not how it normally works,” Debra was told by the Nurse Navigator. Hmmm. “We’ll have your husband evaluated and then we’ll determine the appropriate team of doctors.” No, that’s not how we wanted it to be. Persistence mattered. And so did leveraging our network. A well-placed phone call from the source of the recommendation, and suddenly it was possible to secure appointments with the Medical and Radiation Oncologists we wanted to meet. Leveraging our network was very important in our experience.

So that’s how we began the medical part of the journey.  The initial appointments were set.  I had what I needed to get started. No decisions had been made with regard to the nature or location of the treatment, or even who would be on my medical team. We would take it one step at a time. Thank you Debra.

I was able to enjoy my adventure in Antarctica, which I’ll share more about in future posts, knowing that everything was arranged for when I returned home. But it would be a long road with much more research, information gathering and deliberation before final decisions were made and any treatment would begin. We’ll pick up on this thread in the next post.