We arrived at the St. Mary’s medical complex in Langhorne well ahead of my appointment time. The PET scan would be performed in the Outpatient Imaging center. The waiting area was crowded and the reception desk was busy. But check-in went smoothly and quickly. It all felt so mechanical as the nurses and technicians went about their routine procedures. Everyone was cordial, even friendly, but the formalities and niceties belied the seriousness and extremely personal nature about what was about to unfold.
A PET scan involves the injection of radioactive glucose (sugar) into the blood stream. The way it works is that cancer cells aggressively gobble up the radioactive sugar, much faster than normal healthy cells. Because of the cancer cells’ behavior, they will be become readily identifiable through the scan.
“Positron-emission tomography (PET) is a nuclear imaging technique that creates detailed, computerized pictures of organs and tissues inside the body. A PET scan reveals how the body is functioning and reveals areas of abnormal activity.
… The patient rests on a table and slides into a large tunnel-shaped scanner. The PET scanner is then able to ‘see’ damaged or cancerous cells where the glucose is being taken up (cancer cells often use more glucose than normal cells) and the rate at which the tumor is using the glucose (which can help determine tumor grade). The procedure is painless and varies in length, depending on the part of the body that is being evaluated.” From cancer center.com, Cancer Treatment Centers of America
An IV was started in my arm and the radioactive compound was injected into a healthy vein. Then I waited for about an hour so the compound would have time to circulate throughout my body, be taken up by organs and tissues, and any rapacious cancer cells would take the bait so their presence could be detected.
The actual PET scan took about 30 minutes. My entire body was the subject of the scan, because at that juncture we had no idea how far the cancer had spread. We knew it was around my vocal chords. But where else was it lurking?
After the scan was completed, Debra and I grabbed lunch at the hospital cafeteria. (I must say the variety and quality of the food were both good. Small blessings in stressful times.) I recall that our conversation was less than easy, as we were each somewhat lost in our own thoughts, obviously processing the weightiness of the circumstances. I do remember that we did talk about our son Cameron’s volunteer work at St. Mary’s thrift shop, triggered by a poster in the cafeteria advertising a special luncheon to thank and honor volunteers.
Shortly after lunch, we headed over to the Oncology department. We would soon have our first meeting with an Oncologist and we would begin to learn more about my specific case and treatment options. Mine was the first appointment in the afternoon. When we entered the expansive reception area, we were the only souls there. The receptionist was not yet at her station. I remember looking around, taking in the environment and reading the various materials posted on the walls. This was a different kind of doctor’s office. It was clear that it was set up as place where patients could and would spend considerable time. I remember thinking that it was like a clubhouse, one where membership required a cancer diagnosis.
Soon enough, a nurse showed up, welcomed us to the office and checked us in. Then we were taken to a very comfortable conference room. This was where we would meet with the Oncologist. The doctor showed up within 5-10 minutes. Taking us a bit by surprise, he immediately told us that he had already reviewed the results of the scan. Wow! That was fast. We had not expected the process to be completed so quickly. Here we go.
The doctor started with the good news. The cancer was regionalized. There was no cancer anywhere else in my body except for my throat. That was big news, and a wave of relief passed over both of us. The doctor then explained that there were three tumors. The primary tumor was on the left “pyriform sinus” adjacent to my vocal chords. He continued. The cancer had already spread (metastasized) to both the left and right lymph nodes. (I could actually feel the tumor on the left lymph node.) The doctor’s tone and body language were positive as he then explained the likely treatment regime of radiation and chemotherapy. Significantly and memorably, he said: “we would be going for a complete cure.” These were comforting words to hear. So far so good.
If you have never heard of the pyroform sinus, well, you are not alone. Neither had I. We would soon learn more about this esoteric body part than I ever thought I needed to know. In case you were wondering, here’s what you find on Wikipedia:
“On either side of the laryngeal orifice in humans is a recess, termed the pyriform sinus (also piriform recess, piriform sinus, piriform fossa, or smuggler’s fossa), which is bounded medially by the aryepiglottic fold, laterally by the thyroid cartilage and thyrohyoid membrane. The fossae are involved in speech.”
As we digested what we had just learned, the doctor then told us more about the primary cancer. He explained that the main tumor has already penetrated the thyroid cartilage. This would complicate the treatment and reduce the probability of achieving a complete cure with only radiation and chemo. Ugh. We could be faced with a decision about whether surgery should become part of the plan. “So,” I asked, “what would the surgery entail?” The doctor responded: “The complete removal of the voice box and other affected tissue.” Of course, we were still in the mode of maybes, potentials, options, risks and probabilities. Still, this first mention of dramatic surgery was very unsettling. I did not like that option at all.
After we finished the discussion in the conference room, the doctor took me into an examination room so he could take a look inside my throat. This examination is accomplished by inserting a tiny camera into a nostril and down the throat. (I would become quite used to this intrusive inspection over the days, weeks and months ahead.) As he maneuvered the scope expertly down my airway, the television screen revealed the tumor on the pyriform sinus. There it was in plain site, visibly abnormal as it was silently creating havoc.
On the wall of the exam room, there was a colorful chart that provided detailed descriptions of the designations we so frequently hear associated with cancer diagnoses. The ‘Stages” of cancers were clearly and matter-of-factly defined and described. So I asked the doctor, “What is the stage of my cancer?” He said: “Well, we are required to call it Stage IV because it has metastasized from the primary cancer to other tissues. But I wouldn’t worry too much about the Stage classification, because your cancer is contained in a small region.” Did I take this as a reassuring caveat? Not really.
We left our first visit with an Oncologist with much more information than we had when we started the day. Deb and I were both very pleased by the fact that the cancer was only in my throat and not in any other part of my body. And we were encouraged by the doctor’s upbeat words about going for a complete cure. We were grateful for overall results. But couldn’t help but think about the part of the discussion concerning the potential for surgery. While we both knew that it was too soon to jump to conclusions, and we tried to stay a positive, it did weigh heavily on us because of the likely ramifications.
But no decisions had been made. We had not yet committed to a cancer treatment center or an Oncologist. We had only one consultation under our belts. We knew it was important to keep open minds. What perspectives and options would a second opinion produce? I did not want to move too quickly and end up in a situation where I wished I had made a different choice. The cancer was in my body and affecting my life. I was determined to be in control of my healing and would make decisions according to my values and analyses. I would seek input from “experts” and I would continue to test what I learned against the actual experiences of others who had walked this path. Feeling a sense of control gave me energy and self-confidence.
As part of my 5 Minute Journal routine, on most days I made an entry at the end of the day, reflecting on the day’s events. I focused on one positive-focusing question: “What was great about the day?” Here’s what I wrote in the evening of February 28, 2017.
The special support I had from Deb.
The great news that the cancer is local/regional
Meeting Dr. Flannery
All the support from friends
And so, as the day of the first PET scan and Oncologist consultation came to a close, I had a much better understanding of my condition. In a couple of days, I would have my second appointment and consultation. That would be at the Abramson Cancer Center at Penn Medicine in Philadelphia on March 2, 2018.