Michael’s Story – Tongue Cancer
Tongue Cancer Patient Story
Testimonial: Tongue Cancer Surgery
“This testimonial is in regards to treatment I received for my tongue cancer by Dr. St John and her team at UCLA’s Jonsson Comprehensive Cancer Center.” —Dr. Michael Smith
In 2016, I was diagnosed first with Stage 3B carcinoid tumor of the terminal ileum (colon), and then a month later with Stage 4A tongue cancer. I first had surgery by Dr. Anton Bilchik at Providence Saint John Hospital in Santa Monica for the carcinoid followed 3 weeks later with surgery by Dr. Maie St John at UCLA for the tongue cancer. Afterwards I had 2 months of chemo and radiation of the oral cavity as both the tongue cancer and carcinoid tumor had spread to nearby lymph nodes. A doctor at UCLA said afterwards that my 5 year survival rate was only 0-5% if I had no treatment.
I mention all this to demonstrate that I was a complex case. Of the two cancers, the tongue cancer was the most serious and life threatening. Hence my long-term survival greatly depended on my choice of surgeon and treatment plan. Also, what many cancer patients do not realize, even if they survive cancer, their quality of life may be greatly impacted by their choice of surgeon and treatment. For example, for some tongue cancers, an inexperienced surgeon may remove more of the tongue then necessary, leaving the patient with a partial or complete loss of the ability to speak and swallow, sometimes for life.
As a scientist, and after researching what I could on the Internet and talking to various doctors and other researchers, I realized that my best chance of surviving my 2 cancers was choosing the right otolaryngologist/surgeon, medical oncologist for chemotherapy, radiation oncologist, and other medical specialists. I needed to find the right team which had all these specialists and more. All these specialists had to be among the top in their field for me to have the best chance of surviving my 2 cancers. If one specialist delivered subpar performance, e.g., reading a PET scan wrong, not surgically removing as much of the cancers as necessary, not targeting the cancer areas properly during radiation, not carefully monitoring the chemotherapy treatments in order to avoid a dangerous collapse of your immune system, etc., my chances of survival could be greatly reduced. While cancer kills, so can the treatment, especially for aggressive treatments for serious cancers.
Hence I started visiting top cancer centers in my area. I interviewed potential doctors and surgeons at these centers as I was not only looking for the best cancer center for me, but also at who was going to be my surgeon, and how did they proposed to treat my cancers. I wanted my individual treatment based on my particular cancers, their stages, and my body’s specific medical condition, not “This is how we usually treat this type of cancer” that I heard a lot of. Or “ We always give our oral/tongue cancer patients a feeding tube during their chemo and radiation treatment”, which I felt was not the best for me given that I had colon cancer surgery 3 weeks before my tongue cancer surgery (after which chemo and radiation then followed).
I visited the City of Hope, UCI Medical Center, Cedar-Sinai Cancer Center, USC Norris Comprehensive Cancer Center, UCLA’s Jonsson Comprehensive Cancer Center, and a few others in the Los Angeles area. I also called and talked to doctors at the MD Anderson Cancer Center and at the Mayo Clinic.
I decided that, given the excellent cancers centers in the Los Angeles area where I live, it would be best for me and my family to be treated near my home due to the long recovery times. I also noticed that some centers advertised that they had great follow-up care on their local campuses. I was advised to go where the best doctors are, not necessary where the best follow-up care is. If you pick a great surgeon, then you should have fewer side-effects from any surgery, needing less follow-up care.
All the cancer centers I visited were great, and the doctors I interviewed were excellent. I decided that I wanted my surgeons to not only have MDs, but also PhDs. Due to the type of cancers that I had, I felt that surgeons who were not only great surgeons, but who were also top researchers about my cancers, would give me a better chance of survival. In dealing with cancer, you try to do everything possible to increase your chances of survival, e.g., pick the right surgeon, the right medical team, pick the right treatments, take your prescriptions as ordered, eat properly, avoid depression, exercise as you can, maintain a positive attitude, etc. You want to look for anything that gives you a better edge in surviving your cancer.
I chose Dr. Anton Bilchik at Providence Saint John Hospital in Santa Monica for the carcinoid/colon surgery. He is considered to be one of the country's leading specialists and researcher in carcinoid tumor surgical oncology, and did a wonderful job on my surgery.
As my Stage 4A tongue cancer, which had spread to my lymph nodes, was far more dangerous, I took particular care in choosing the right doctor for me as my survival depended greatly on whom I chose.
As I mentioned, all the head and neck cancer centers that I looked at were great. However, when I met and interviewed Dr. Maie St John, who is Co-Director of the UCLA Head and Neck Cancer Program, Chair of the Department of Head and Neck Surgery at UCLA, and a leading researcher in head and neck cancers, I realized that Dr St John was clearly a class above the rest. She looked at my medical records, set up a team of a medical oncologist (Dr. Deborah Wong), radiation oncologist (Dr. Robert Chin), and others who carefully described initially what treatment they would recommend specifically for me, as well as subsequent changes to my plan of care as my cancer treatment progressed.
Dr. St John is a true doctor in the traditional sense. She listened carefully to whatever I said, is very compassionate, and spent whatever time necessary with me, instead of the unfortunately practice of many doctors where they see you quickly like you were part of an assembly line. Her concerns for the feelings and emotions of the family were extraordinary. The time she took to carefully discuss my treatment plans with me, analyzing meticulously the specific facts and the many test results about my cancer in the context of my own medical condition, in my opinion, significantly increased the odds that I would receive the best and appropriate care for my specific cancers, and hence increase not only my survival rate but also my future quality of life afterwards.
Dr. St John is not only a brilliant researcher, but also displayed incredible surgical skills. For example, she was very careful when she removed my tongue cancer, to leave as much of the tongue remaining as possible, she did not just take a chunk out. The same day, after I woke up from the surgery, I called my sister who is a speech-language pathologist and a former president of the California Speech and Hearing Association. She was stunned how well I was still able to speak as so many tongue cancer patients she has seen in her practice have significant speech problems after surgery for the rest of their lives. In fact, she told me:
"It has been my experience that surgeons do not always consider quality of life after surgery when performing head/neck surgery. They are, of course, focused on saving life, not preserving function. A significant portion of surgeons fall into this category as seen by the high percentage of patients who often lose speech and swallow function. However, I have seen that patients, whose surgeons considered both aspects and tried to balance them, particularly with tongue surgery, achieved a significant increase in quality of life after surgery, especially when the surgeon attempts to preserve speech and swallow function as well as length of life."
This reason alone, for me and for other tongue cancer patients, is sufficient in itself to choose Dr. St John and the Jonsson Cancer Center for our treatment. I cannot emphasize enough how important it is to head and neck cancer patients to be able to have an almost normal life after surgery. A life with no speech or swallow function for the rest of your life is a terrible one to bear indeed. Add in Dr St John’s incredible surgical skills, her compassion, her empathy, and the quality of her cancer team that she has built over the years, all this is a significant reason why UCLA’s Head and Neck Cancer Program is ranked so high in the US.
Finally, I should mention that other prominent cancer surgeons that I have talked to have all told me that she is a world-renown surgeon and researcher, and is highly respected by her peers.
I would certainly highly recommend Dr St John and the Jonsson Cancer Center to any head and neck cancer patient. Also, because I believe that this kind of quality of care for cancer patients should be strongly encouraged and supported, I have donated in the past, and will continue to do so in the future, to Dr. St John and her research. I would like to see future head and neck cancer patients have the same quality of treatment that I have received, and especially, not only be cancer free, but also have the same quality of life that I have enjoyed during the last 4 years after my surgery.
—Dr. Michael Smith