Benjamin Maughan
My Fight with Cancer
I was diagnosed with a rare and deadly cancer called Esthesioneuroblastoma. This is my story of learning I had cancer, treating cancer, and now recovering from cancer.
Thank you for your love and support during this fight!
Benjamin Maughan
My Fight with Cancer
I was diagnosed with a rare and deadly cancer called Esthesioneuroblastoma. This is my story of learning I had cancer, treating cancer, and now recovering from cancer.
Thank you for your love and support during this fight!
LEARNING
At the time, I lived in Southern Utah with my wife. We love to cook, play sports, travel, and spend as much time doing things outdoors as possible. I have always been a healthy guy, and a healthy diet, good exercise, and great sleep have always been important to me. Up until 2021, I had never experienced a serious ailment; however, this year has brought on a deadly challenge I thought I would never face. I would like to share with you my story.
During the year 2020, I started having troubles breathing through my nose. As the year continued, the condition progressively became worse. In March of 2021, I woke up one morning and could no longer breathe through my nose. Up until this point I had assumed that this problem I was experiencing would eventually go away. However, my nose continued to become more constricted up to the point that I was solely breathing through my mouth both day and night. This resulted in terrible sleep, as I found myself gasping for air and waking up to an incredibly dry mouth and throat almost every hour of the night. I finally realized this problem was not going away and that it needed to be addressed.
At the time, I lived in Southern Utah with my wife. We love to cook, play sports, travel, and spend as much time doing things outdoors as possible. I have always been a healthy guy, and a healthy diet, good exercise, and great sleep have always been important to me. Up until 2021, I had never experienced a serious ailment; however, this year has brought on a deadly challenge I thought I would never face. I would like to share with you my story.
During the year 2020, I started having troubles breathing through my nose. As the year continued, the condition progressively became worse. In March of 2021, I woke up one morning and could no longer breathe through my nose. Up until this point I had assumed that this problem I was experiencing would eventually go away. However, my nose continued to become more constricted up to the point that I was solely breathing through my mouth both day and night. This resulted in terrible sleep, as I found myself gasping for air and waking up to an incredibly dry mouth and throat almost every hour of the night. I finally realized this problem was not going away and that it needed to be addressed.
I sourced the best ENT doctor in St. George and scheduled a visit. An endoscopy showed that there was extreme inflammation in my sinuses. Suspecting a greater problem, a CT scan was performed, which in turn revealed a large mass stemming from my right superior turbinate. Presumed to be a polyp, an out-patient surgery was scheduled for the following week. The surgery would include addressing the inflammation and removing the mass. All removed tissue would be sent to a pathologist for further investigation.
All was well a few days after surgery and I was breathing better than ever before! I thought I was cured and my worries were over. Excited, I went to my post-surgery follow-up appointment a week later to report to Dr. Vaughan that he had done an amazing job and that I was breathing freely. As I explained this to him his demeanor changed, he sat down, and he told me he was sorry. The next words out of his mouth made no sense. I was paralyzed. A part of me thought it was a joke and that he was going to tell me I was fine. “Benjamin, you have cancer. The pathology report came back and the results are clear. What we assumed to be a polyp was in fact a tumor.” Shocked, all I could say was, “Tell me more.” He further explained that the report showed a very rare and serious cancer. I was diagnosed with Esthesioneuroblastoma. It is a cancer of the olfactory nerves, stemming from the skull base where the olfactory bulbs lay and hourglasses up into the brain and down through the nasal cavity, affecting the surrounding bone and tissue. If I was lucky, this would be the extent of my disease. The following stages include metastasis into the eyes, brain, lymph nodes, liver, and lungs. When this particular cancer metastasizes, the 5-year survival rate drops below 20 percent.
I sourced the best ENT doctor in St. George and scheduled a visit. An endoscopy showed that there was extreme inflammation in my sinuses. Suspecting a greater problem, a CT scan was performed, which in turn revealed a large mass stemming from my right superior turbinate. Presumed to be a polyp, an out-patient surgery was scheduled for the following week. The surgery would include addressing the inflammation and removing the mass. All removed tissue would be sent to a pathologist for further investigation.
All was well a few days after surgery and I was breathing better than ever before! I thought I was cured and my worries were over. Excited, I went to my post-surgery follow-up appointment a week later to report to Dr. Vaughan that he had done an amazing job and that I was breathing freely. As I explained this to him his demeanor changed, he sat down, and he told me he was sorry. The next words out of his mouth made no sense. I was paralyzed. A part of me thought it was a joke and that he was going to tell me I was fine. “Benjamin, you have cancer. The pathology report came back and the results are clear. What we assumed to be a polyp was in fact a tumor.” Shocked, all I could say was, “Tell me more.” He further explained that the report showed a very rare and serious cancer. I was diagnosed with Esthesioneuroblastoma. It is a cancer of the olfactory nerves, stemming from the skull base where the olfactory bulbs lay and hourglasses up into the brain and down through the nasal cavity, affecting the surrounding bone and tissue. If I was lucky, this would be the extent of my disease. The following stages include metastasis into the eyes, brain, lymph nodes, liver, and lungs. When this particular cancer metastasizes, the 5-year survival rate drops below 20 percent.
This news came as a complete shock. I didn’t know what to think. My world had been flipped upside down. I felt trapped and powerless. These feelings were foreign to me, and I hated it. I have always been in control of my health and have always taken care of it. But now, I had something growing inside me that threatened my existence. I wanted a game plan. I wanted to know how we were going to take care of this and how this would never hold me back from living a long and happy life.
Dr. Vaughan explained to me that there is a collective of cancer doctors in the state of Utah that meet by video call on a weekly basis to discuss rare cancers they come across. He assured me that my case would be presented at their meeting—in fact, that these doctors had already been given a heads up about my ENB case. He assured me that I would be in good hands and that this collective of doctors, over the next several weeks, would discuss, game plan, and select a team to fulfill my treatment.
The next month was a restless one. Apart from internalizing this new knowledge, spending countless hours researching the matter, and having to wait patiently on any word from the doctors, I was constantly sent to various places for multiple types of imaging and to have tests run on my blood, urine, and even stool samples. These doctors wanted to know everything and to collect enough data to make a final decision. From Utah to Florida and even to Mayo Clinic, my tumor was passed around for additional biopsies by some of the country’s finest institutes. Everyone wanted to be sure that this was in fact ENB and what stage it was in.
After a month I received word from Dr. Vaughan that a consensus had been made. The diagnosis was Low-grade Esthesioneuroblastoma Kadish Stage A. This came with a lot of pain but also a ton of relief. At this point it was believed that the cancer had not yet metastasized. A team of doctors had also been assembled to work on my case, including Doctor Alt (an ENT doctor who was a specialist in skull base surgeries) and Doctor Menacho (a renowned neurosurgeon), as well as their staff and other oncologists. I felt as if the dream team had been appointed to my case, and I was looking forward to meeting them to discuss the next steps.
True to their reputations, these doctors were amazing. They explained to me that surgery would be the first step in solving the problem. They wanted to make sure they were as prepared as possible to design the surgery, so they ordered additional imaging to confirm how much spreading there was in acute locations. The results were clear that a tumor was still growing within my nasal cavity, up and into my cribriform plate (the part of your skull at the roof of the nasal cavity that is porous, allowing the olfactory nerves to run from the olfactory bulb down into the nasal cavity), and within the dura mater where it met the cribriform plate. All of this was found to be on the right side. It was not certain whether the left side had been affected. It was also not certain whether the olfactory bulbs or tissue above them were affected on either side.
Feeling prepared, the doctors explained to me the operation that would take place. My entire right nasal cavity would have to be gutted. My turbinates would be removed, and all tissue affected by the nerves would have to be removed back to a certain margin. The cribriform plate would have to be drilled away. The surrounding dura would need to be removed, causing a cerebral spinal fluid leak that would have to be addressed. After all of that, the doctors would have to make a game-time decision based on their experience and how things looked to continue removing tissue if necessary. Finally, structural repairs would be made.
Urgency was of the essence. I was made aware that I was perhaps the luckiest ENB patient that Dr. Alt would treat in his 9 years as a surgeon. He had mentioned that by the time his former patients had noticed they had symptoms, the cancer had already metastasized and spread further than mine had. He made it clear that now was the best time to get treatment, for if the tumor could be removed before any further growth, I would stand the best chance of a successful surgery, easier recovery, less invasive post-surgery treatment, and ultimately a longer, healthier life with minimal to no complications. He made it clear as well that early treatment would also lessen the chance of recurrence in the future.
It was perhaps the hardest and easiest decision to say yes to treatment. There were obvious risks involved, including brain injury, blindness, additional nerve damage, excessive bleeding, cerebral spinal fluid leaks, loss of smell, loss of taste, and, of course, the financial side of all this. But I knew the risks did not compare to the benefits of a successful surgery. I knew I needed to put myself into a position that would allow me to achieve my ultimate goal: to live a long, healthy, and happy life with my wife and loved ones, being able to do all the things I enjoy without anything holding me back. And so, surgery was scheduled for two weeks later.
TREATING
When that day arrived, I felt calm and ready. Many prayers and well wishes had been sent my way. I knew I was heading to the best place with the best doctors for this surgery. We met at the University of Utah Hospital early in the morning on May 20. After speaking with the doctors one final time, I was put under and left everything in their hands. I woke up and remained in the hospital for 3 days with constant care. Lucky for me, my recovery was a speedy one. Of course, I had terrible pain and massive headaches, but I was able to move on my own, walk the hospital halls, eat solid food, and perform well on my vision and cognitive tests.
When I was ready for the news, the doctors visited me to inform me on the surgical details. To their surprise, the tumor was more progressed than they had expected. They gutted my right nasal cavity entirely. A much larger portion of the skull and dura needed removal than previously expected. A large part of my septum needed to be removed as well. Once the dura was removed, they noticed my right olfactory bulb looked abnormal, so the decision was made to remove it entirely. Thankfully they made this call. On the other side, tumor was growing up and around that area of my brain. Luckily the brain looked healthy, and to their best judgement they were able to remove all of the tumor extending upward. Fortunately, the left side also looked clean, and no work was needed to be performed on that side aside from collecting some tissue for grafts to replace missing tissue on the right. The repairs were clean, dissolvable foam packs were placed to hold everything in place, and stents were stitched into my nose to provide structural support during the healing process. Finally, Dr. Alt explained that because the tumor progressed as far as it had, radiation would most likely be necessary.
The surgery was a huge success and I was filled with gratitude. I was so happy that we pulled the trigger and proceeded with the treatment. I was very lucky to have found it as early as I had and to have had an amazing team of doctors in my corner to see me through.
Around noon of day 3, I was released with a follow-up appointment in Salt Lake scheduled for two weeks later. The doctors made it clear that the first couple of weeks of recovery would be very difficult. With that type of surgery and head trauma, I would be susceptible to headaches, blurry vision, nausea, weakness, terrible sleep, and a possible cerebral spinal fluid leak. They told me to take it as easy as possible but to achieve daily movement and to eat and drink a lot of healthy foods and liquids to help expedite the healing process. I would also need to start nasal rinsing to help clean and clear all the remaining blood and debris that would build up post-surgery. In the meantime, the doctors would send all the removed tissue for biopsies to help determine what post-surgery treatment would include.
When that day arrived, I felt calm and ready. Many prayers and well wishes had been sent my way. I knew I was heading to the best place with the best doctors for this surgery. We met at the University of Utah Hospital early in the morning on May 20. After speaking with the doctors one final time, I was put under and left everything in their hands. I woke up and remained in the hospital for 3 days with constant care. Lucky for me, my recovery was a speedy one. Of course, I had terrible pain and massive headaches, but I was able to move on my own, walk the hospital halls, eat solid food, and perform well on my vision and cognitive tests.
When I was ready for the news, the doctors visited me to inform me on the surgical details. To their surprise, the tumor was more progressed than they had expected. They gutted my right nasal cavity entirely. A much larger portion of the skull and dura needed removal than previously expected. A large part of my septum needed to be removed as well. Once the dura was removed, they noticed my right olfactory bulb looked abnormal, so the decision was made to remove it entirely. Thankfully they made this call. On the other side, tumor was growing up and around that area of my brain. Luckily the brain looked healthy, and to their best judgement they were able to remove all of the tumor extending upward. Fortunately, the left side also looked clean, and no work was needed to be performed on that side aside from collecting some tissue for grafts to replace missing tissue on the right. The repairs were clean, dissolvable foam packs were placed to hold everything in place, and stents were stitched into my nose to provide structural support during the healing process. Finally, Dr. Alt explained that because the tumor progressed as far as it had, radiation would most likely be necessary.
The surgery was a huge success and I was filled with gratitude. I was so happy that we pulled the trigger and proceeded with the treatment. I was very lucky to have found it as early as I had and to have had an amazing team of doctors in my corner to see me through.
Around noon of day 3, I was released with a follow-up appointment in Salt Lake scheduled for two weeks later. The doctors made it clear that the first couple of weeks of recovery would be very difficult. With that type of surgery and head trauma, I would be susceptible to headaches, blurry vision, nausea, weakness, terrible sleep, and a possible cerebral spinal fluid leak. They told me to take it as easy as possible but to achieve daily movement and to eat and drink a lot of healthy foods and liquids to help expedite the healing process. I would also need to start nasal rinsing to help clean and clear all the remaining blood and debris that would build up post-surgery. In the meantime, the doctors would send all the removed tissue for biopsies to help determine what post-surgery treatment would include.
RECOVERING
Those first two weeks were extremely difficult. They were full of sleepless nights, head pain, and an amazing amount of discomfort. Half way through, it was clear to me that I could either succumb to this terrible state and remain victim of my oppressor, or I could rise above it become victorious. When the crossroad came, I took the latter and created my own narrative - VICTOR OVER VICTIM. This mental shift expedited my recovery and put me in a mindset to win. By the end of those two weeks, I was moving around well, the pain started to ease, and I was able to pass enough debris out of my nose to begin breathing. My curiosity grew by the minute as to what the doctors would say during my return appointment.
The follow-up appointment came with great relief. The pathology report showed that there were significant margins of healthy tissue beyond the tumor. Therefore, the consensus was that radiation would not be necessary at this time! Consistent imaging over the next several years would be necessary to monitor for recurrence. Some of the stents were removed, and my nose received a deep cleaning. That felt so good! Afterwards, I left the hospital with a big smile and a positive outlook on the future.
The following months continued to get better and better. During my month two visit, the remaining stitches and support items in my nose were removed and everything was healing nicely and quicker than expected. I received the go ahead to return to work and a week later I was in Texas working once again.
Month six was for all the marbles. This appointment would show where my cancer stood. Over Thanksgiving of 2021, I had two MRIs performed on my head. One with contrast and one without. With great anticipation, I met with Dr. Alt a few days later to see what could be on the line for me and what the rest of my life could potentially look like. Anxious my wife and I were ushered into his office and greeted with a huge smile and great news - the MRI came back clean and there were no signs of illumination from the contrast meaning there was no indication of cancer cells in my body! We had done it! The relief and positive emotions were so intense. I will never forget that moment giving Dr. Alt a hug for saving my life and embracing my wife knowing our future together had been secured. Afterwards we celebrated all the miracles with our friends and family. A truly amazing day!