On December 28th, 2018, I rubbed my hands in preparation to blow out the candles on my 27th birthday cake when I noticed a hard bump at the base of my right middle finger. It was so hard I thought it was my knuckle and that my finger was dislocated. After a couple failed attempts to pull it back into place, I realized it already was and that this was indeed a bump. This was the start of my Sarcoma journey.
I saw my general practitioner when I returned home who referred me to a hand surgeon. Both believed the bump was a ganglion cyst. They even joked that a short while ago the common treatment would be to smash this with a Bible, which happily we did not attempt. We did unsuccessfully attempt to drain it with a needle. Still not alarmed, the doctor allowed some time to see if it would pop naturally during physical activity. That too was unsuccessful, so the surgeon elected to remove the mass without any further testing.
I had surgery to remove the cyst on June 4th, 2019, coincidentally my girlfriend’s birthday (I did not win boyfriend of the year this year). I would later learn this initial surgery is a common mistake in the Sarcoma journey and one with potentially devastating consequences. Referred to as a “oops surgery”, this occurs when they remove the mass without testing it beforehand, thus performing the surgery without the benefit of knowing its malignant nature. Without this knowledge, the surgery almost assuredly does not remove all cancerous cells and instead often spreads the cancerous cells further. The consequences of this I dealt with later.
A week later I got the call that changed my life. Sitting in my office on a sunny Friday afternoon beginning to think about what I was going to do that weekend, my hand surgeon called trying to delicately break the news to me. The biopsy returned with the diagnosis of Undifferentiated Pleomorphic Sarcoma (“UPS”). UPS is an extremely rare form of cancer, less than 1% of all cancers, but it is an aggressive cancer that has the tendency to spread from its original location (often the limbs) to the lungs. My sunny Friday quickly turned dark and gloomy.
After a second opinion confirmed the diagnosis, I had to tell my family and friends. I grew up in Rochester, NY but now live in Atlanta, GA. My parents are still back in Upstate NY, so I had to deliver the news via FaceTime. They both answered the phone with the cheeriness of an everyday conversation completely ignorant to the news I had to share. Watching and hearing their devastation from hundreds of miles away was one of the hardest parts of this journey. It didn’t get any easier having to break the news to my loving girlfriend and close friends.
With my support behind me, defeating cancer became the only goal in my life. We met with several doctors, called for second, third and fourth opinions, researched the latest and greatest treatments, prayed often, and even looked for nutrition and lifestyle changes to give me the best odds of defeating this. The unfortunate part of this is that Sarcoma, and Undifferentiated Pleomorphic Sarcoma specifically, is so rare that there isn’t much definitive research to rely on. There are not very many, if any, clear carcinogens or known risk factors. Something I hope to help fix.
Luckily, our efforts led us to Dr. Edward Athanasian (“Dr. A”) at Memorial Sloan Kettering Cancer Center in New York, NY. Dr. A is the only physician in the United States specializing in both hand surgery and Sarcoma. Dr. A quickly gained our trust with his high degree of knowledge and extensive experience treating Sarcomas of the limb; a combination we needed to accept his treatment plan. He instructed with profound certainty that a ray resection of my right middle finger is the only acceptable course of treatment. I had an extremely hard time grasping this. The majority of it was gone, why wouldn’t radiation work? Why not surgically remove more tissue of the area? All naïve questions in hindsight that don’t consider how aggressive this form of cancer is.
For all that don’t know me, I’m a very active person and sports have been my life. I played a variety of sports growing up and all the way through college, where I played football at the University at Albany. I’m right hand dominant and the thought of losing a finger on my right hand scared the hell out of me. I thought I would be losing the ability to do the things that make me the happiest. Getting myself on that surgery bed was also one of the hardest things I ever had to do in my life. At the end of the day, losing a finger was a small price to pay to beat cancer and I was fortunate to even have this option. I had my right middle finger removed August 7th, 2019. The surgery was a success!
Dr. A had clear margins, but they were close margins. This means that all the cancerous cells were found within the removed mass, but close to the edge (2mm to be exact). Normally this would have been enough, and no further treatment would have been needed, but because I had the “oops surgery” Dr. A recommended radiation treatment post-surgery. It was a judgement call because although radiation is an effective treatment, it can lead to other forms of cancer later in life and impair the hand’s function. Real tragic irony that the cure can also be the cause of another cancer. It goes to show how much further we must go in effectively treating all cancers.
For eight weeks beginning in October 2019, I underwent radiation treatment at Emory Hospital in Atlanta, GA. Think of the worst sunburn you’ve ever had in your life, and that would be about what it was halfway through. It was pretty gnarly by the end of it, but again, this was all a small price to pay to defeat cancer.
On the day before Thanksgiving 2019, I rang the bell at Emory concluding my cancer treatment. I still return to Dr. A for frequent check-ups, but I couldn’t be happier to say I have been cancer free since August 2019!
Along with my girlfriend, family, and friends, Trent was someone who really supported me during this time. I messaged Trent after Dr. A mentioned MF2C and their mission. Trent was extremely generous with his time and willing to share his experience with me at each step along the way. Having Trent share his experience along the way was like being given a flashlight while lost in the woods at night – it provides guidance, clarity, and comfort during an uncertain journey. This is ultimately why you’re reading my story now. I know how impactful it was for Trent to share his story with me and I hope I help support others the same way.
With my treatments behind me, and haven gotten to better know Trent and his mission with MF2C, I wanted to get involved and help others battling cancers of the limb. MF2C is a non-profit dedicated to raising awareness for Sarcoma, supporting advanced, less evasive treatments, and helping others battling this disease. Please join us in giving the middle finger to cancer!