What I’ve Learned After Nine Operations and 66 Rounds of Radiation for Head and Neck Cancer
This May, Bob Cancalosi, 58, shared his story at the 18th annual Founders’ Day luncheon, an annual event to celebrate Mass. Eye and Ear’s mission of providing excellent care of disorders that affect the eye, ear, nose, throat, head and neck.
I’ve had a lifetime of head and neck tumors for more than 40 years and nine separate operations to eradicate them.
When I was only 17 years old, I developed a tumor the size of a Ping-Pong ball under my right ear. At the time, my doctor in New Jersey wasn’t sure what to do. He ended up removing the tumor, which led to eight tumor-free years. Then, when I was 25 years old, four more marble-sized tumors appeared and paralyzed my face. Those were removed in New York City and things improved; l thought the idea going forward was that when these tumors came in, they would get cut out, and life would be good.
I then had 30 great years with no issues. In that time, I married the love of my life, Barbara, and brought three wonderful children into the world. I also had an enjoyable career as an executive and leadership director at General Electric.
But, at the age of 56, the right side of my face suddenly became paralyzed once again.
My Journey to Boston
We were living in Wisconsin at the time and the doctors at our hospital thought they could radiate the tumor that was causing the paralysis. I underwent 33 rounds of radiation, which shrank the tumor and brought my face back, but for only three months.
This time, the doctors told me I was in a very complex situation and needed to go to a hospital with more expertise in these tumors. They suggested I go see Tessa A. Hadlock, MD, at Massachusetts Eye and Ear in Boston.
My Time at Mass. Eye and Ear
Barbara and I flew to Boston on November 29, 2016, to meet with Dr. Hadlock, who is the director of the Facial Nerve Center at Mass. Eye and Ear. She immediately ordered a special imaging test called a 3 Tesla MRI. The next day, we met with Dr. Hadlock and her colleague, head and neck surgeon Mark A. Varvares, MD, FACS.
Dr. Hadlock said, “I have only seen this once before, and young man, we need to move quickly, you’re in trouble.”
I thought that meant surgery in a month or two. She said no, I’d need it next week.
On December 11, 2016, I underwent a 12-hour surgery with Drs. Hadlock and Varvares to remove the cancer in the parotid gland and reconnect my facial nerves. Another surgeon, Felipe Santos, MD, performed a procedure called a mastoidectomy to get the facial nerve reattached to the bony area of my face to enable Dr. Hadlock and the team to restore my facial function.
Four additional operations were required due to complications, and when all was said and done, I was in the IMCU (intermediate care unit) at Mass. Eye and Ear for 21 days, including Christmas. It was really tough to have my whole family in Wisconsin and Barbara and I to be here.
As I recovered throughout the new year, the doctors saw the margins were clear, but wanted to be sure they got any microscopic cancer particles. So, we rented a home in Cambridge, MA. for two months, and I walked the Longfellow Bridge to Mass. Eye and Ear every single day, where I underwent 33 more rounds of radiation in addition to chemotherapy.
Getting Through the Tough Times
How does one take this all in, the ongoing tumors, radiations, surgeries and the rare salivary duct carcinoma that was found and removed?
I have a passion for journaling, and every day write for about 2 hours, recording things that resonate with me and lessons I’ve learned. . This was especially helpful during my time at Mass. Eye and Ear, and during the 21 days in the IMCU. I wrote down every single thing I saw and heard: Every conversation with a clinician, everyone who came into the room, and medications I was on, and most importantly, what I needed to do when I got out to sustain my healing.
This May on Founder’s Day, when Mass. Eye and Ear asked me to share my story, I reviewed these notes and wanted to reflect on some things I was grateful for in my experience.
Technology involved in my care, including the 3-Tesla MRI scan that detected my rare cancer that other machines could not, and the proton radiation therapy that enabled a personalized radiation treatment to kill microscopic cancer residuals.
Clinicians who didn’t just rely on technology, but anything holistically that could help me improve as a patient. I was a skeptic of acupuncture, but once it was recommended during my stay, I became to rely on it to give me peace. I even had 62 leeches placed on me at one point to help relieve congestion of the reconstructive tissue used to rebuild my face — only the great hospitals can marry the newest technology with the old stuff that really helps.
Nurses who I got to watch in action, often overhearing things like “I got your back,” “I’ll cover this for you,” and “tell me how I can help you.” In my career, I’ve studied high-powered teams and organizations, and that was what I was witnessing every day with my nurses.
Co-location and collaboration of Drs. Hadlock, Varvares and Santos. Having them all under one roof allowed them to work together on my unique case. I’m grateful they thought all of them would be smarter together than one of them alone, and worked together to help treat me of this rare cancer.
Mass. Eye and Ear and everyone involved in my care helped make a tough situation better. Every small tumor and little piece of cancer had a massive impact in my life, but because of the skills and ability of the staff, I am now cancer-free and look forward to helping as many people as I can.