The MCA BlogConnecting with others one story at a time
The Mesothelioma Cancer Alliance would like to introduce you to an amazing and inspirational 19-year survivor, Sean Gee! Sean has shared his incredible story with us, and hopes to help all of those affected by mesothelioma. Please read his journey below.
My name is Sean Gee and I am a mesothelioma survivor. I celebrated my 19th year in remission at the end of August this year. Yes, you did read that last part correctly!
Before I continue, I think I need to explain a little about my case. I was diagnosed with a rare subset of this cancer. The mesothelioma I was diagnosed with only effects men and is located on the tunica vaginalis, which is the lining that surrounds the testicles. My case was completely outside the norm, so my treatments and results are not typical.
In 1991, I was a typical high school senior. One of the classes I was required to attend was sociology. I thought this class was more of waste of time, though it actually saved my life. I’ll return to this later. After graduation, I was lucky enough to land a job with the local school district as a teacher’s aide. One of the things I was required to get before starting my employment was a full physical. During the course of the physical, I informed my physician about a few weird lumps I had noticed on one of my testicles. You see, during the Sociology class, the teacher had made sure to include a section on self-examinations; breast for the girls and testicular for the guys. Like the rest of my fellow classmates, I snickered and joked with the guys. Thankfully though, I had paid enough attention to know that I needed to bring it up during the physical.
My family doctor referred me to an urologist and after a quick exam he determined that they were cysts. His advice to me was that if the cysts grew or started hurting, then I needed to come back. As far as I was concerned, I was fine and I went about my life as if nothing was wrong. And in fact, I never once felt any pain nor did I get sick during my entire ordeal.
Now from the time of my physical and the time I was diagnosed, close to 1 1/2 years had passed. In this time, I was working for the school district, attending community college and was energetically involved in community activism in my local area.
In April of 1993, I turned 20. I had been keeping track of my “cysts” since my first appointment and I decided that they had grown enough to concern me. I made an appointment with my family doctor and figured that I’d see what was going on. Of course, my family doctor referred me back to the urologist. After another physical examination of the cysts, the urologist declared that he needed to do an ultrasound to confirm his suspicions that the cysts were in fact tumors.
So the urologist and I headed to another examination room where a small ultrasound was located. He proceeded to apply the gel that is needed and started to scan the lumps. Unfortunately, the ultrasound was not strong enough for him to determine what the lumps actually were. At that point, he decided that what he needed was the ultrasound machine used on expectant mothers. I was able to clean up and then we switched rooms. Once in the second room with the more powerful machine, they had me remove my clothes from the waist down. They applied the gel again and were about to start the scan. Before they started, the door opened and in walked a group of students who were being trained on the use of the machine (I am able to look back at the situation now and find the humor in it. At that time, I did all I could to ignore the fact that all these strangers were watching me have my testicles scanned).
After the scan, the urologist informed my parents and I that the cysts were in fact tumors and he wanted to schedule a biopsy to determine whether they were malignant or benign. Now of course at 20 hearing the word tumor caused all types of things to run through my mind. I have always been the type of person that prepares for the worst. That way, anything less would be a relief.
My urologist wanted to schedule the biopsy for June but I postponed it until the beginning of July. The main reason was I wanted to fly out to Colorado to be with my grandmother while she was dealing with heart issues. During my time in Colorado, I was able to put my own health issues to the side and sort of forget them. When I returned to California, I was more prepared for anything that might come.
In July, I went in for my biopsy. I was told prior to the surgery that the whole procedure should only take about 30-45 minutes. They had also prepared me for the possibility that I might lose the testicle that had the tumors. 1 1/2 hours later, my surgery was completed. I found out afterwards that during the course of the surgery, they had to send for a medical book to help them determine what I had. They did have to remove the testicle, as the cancer was completely covering the lining. I also found out later that they sent out slides of my tumors to 19 different oncologists in California, and only 2 of the doctors knew what it was. Fortunately, my oncologist was one of them. That’s when I was officially diagnosed with mesothelioma.
During my follow up appointment, my oncologist informed my parents and I about what happened during the biopsy. I honestly do not remember much about that meeting. As soon as I heard that I had cancer, I sort of spaced out. It turns out I was not as prepared as I thought I was. The oncologist laid out the plan for my treatment. I was immediately scheduled for chest x-rays and a full-body scan to determine if the mesothelioma had spread into any other areas of my body. Once the tests came back, I found out that the mesothelioma was detected in the lymph nodes on the left side of my body. I was immediately scheduled for another surgery to remove the lymph nodes. I was also given the option of having chemo, radiation and a combo of both. I opted to only do the chemo. I had seen images of people that had gone through radiation therapy and I did not want to go through that.
At the end of August, I went in for my 2nd surgery. They removed the lymph nodes on my left side from just underneath my armpits to the top of my leg. Originally, the oncologist thought I had 3-4 infected lymph nodes, but during the surgery they found that each lymph node was actually a cluster of infected nodes. I also found out later that I was within weeks of the nodes bursting and the mesothelioma spreading throughout my body. Had that happened, there would not have been anything they could have done to remove the disease. During the course of my recovery from the surgery, they administered my chemotherapy treatments. They did what they called a “belly bath.” I had a catheter inserted in my stomach wall and they would administer the chemo that way. I had 3 daily belly baths for 4 days. (Again, I want to reiterate that my case and treatments were not the typical due to the location of my mesothelioma). I do not remember much about the chemo since I was very heavily medicated. I do remember one moment of clarity and feeling like there were people inside my stomach trying to claw their way out. I always tell people that it was like the dinner scene in the Alien movie where the alien comes out of the guy’s stomach.
I was in the hospital for 11 days but only remember 3 of them. I actually am thankful for that.
For the next 2 years, I was scheduled for blood work and body scans to determine if the cancer had returned. These happened every 3 months. Also during this time, I contacted the Sociology teacher from my high school. I told her about all that had happened and thanked her for saving my life. We also worked out a deal where I would come to her class and give a presentation on what had happened. I gave presentations to her classes for about 7 years.
Over the past 19 years, I have only had 1 scare. About 1 1/2 years after my surgery, my blood work came back and showed my cancer indicators were elevated. We did another round of blood work and thankfully it turned out to be a false positive.
Thank you for taking the time to read through my story. I consider myself to be extremely lucky in my experience. In all the time that I have been a part of the mesothelioma community, I have only heard of one other person that had the same situation as mine.
I hope that my story is able to give a glimmer of hope to all that are affected by this terrible disease.
A Note for Our Readers:
We appreciate Sean’s willingness to share his harrowing story of treatment and survival from testicular mesothelioma. It should be noted that testicular mesothelioma is an exceedingly rare origin of the disease and has been documented in less than 100 cases to date in English literature. As an ethical standard, Mesothelioma Cancer Alliance strives to provide only evidence-based, scientific cancer and treatment information for our visitors as it relates to specific tumors. Due to the rarity of the disease, lack of distinct risk-factor feature sets, symptoms, or standardized treatment protocols, the Mesothelioma Cancer Alliance does not currently feature information on the topic of testicular mesothelioma.