At 33, I’m not living the life I had imagined for myself. If cancer hadn’t interrupted my plans, I would be serving in the United States Army Special Forces by now, a profession that was inspired by my father’s career as a military officer and helicopter pilot and one that I had dreamed about since I was a child. Although I may not be living the future I had planned, I believe I’m living the one I was destined to have.
“My message to every patient with a rare cancer is, you are not alone.”— David Hysong
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In 2015, while in training for the program, I began feeling exhausted and dropped in performance tests, from seventh in my class to last. It was then that I noticed a lump on the right side of my neck. I made an appointment with an ear, nose, and throat physician, who excised the mass and sent me on my way with prescriptions for antibiotic and pain medications. But before I could get to the pharmacy, I passed out on a street in Cambridge, Massachusetts, and was taken to Massachusetts General Hospital. There, I received the news that altered the trajectory of my career and my life.
A biopsy of the tumor tissue showed that I have adenoid cystic carcinoma of the salivary gland, an extremely rare cancer that affects about 1,200 people each year in the United States.1 Fortunately, a close examination of the tumor margins found that the cancer had not spread to my lymph nodes and had not invaded the perineural space. Because my prognostic factors were favorable, I was able to avoid adjuvant radiation therapy to my head and neck area and cytotoxic chemotherapy, which has shown only marginal effectiveness in the treatment of this cancer.
When Rare Is Not So Rare
I soon came to learn that, although the 5-year survival rate for adenoid cystic carcinoma is about 89%, a recurrence of the cancer many years later is common, dropping the 15-year survival rate to approximately 40%. Just 27 when I was diagnosed, I didn’t like those odds. Although I am currently in remission, I can’t help feeling like the sword of Damocles is hanging over my head and the heads of all survivors of adenoid cystic carcinoma and other rare cancers with limited treatment options.
In 2016, I decided to make it my mission to help propel the development of more targeted therapies for patients with rare cancers and maybe even find cures for some of them. Rare cancers are defined by the International Rare Cancer Initiative as those that occur in fewer than 6 per 100,000 people annually.2
I launched SHEPHERD Therapeutics (https://shepherd.bio), a biotechnology company dedicated to accelerating the discovery of life-saving treatments for rare cancers, and the SHEPHERD Foundation, a nonprofit organization that advocates for increased federal research funding for rare cancers and mandates front-line molecular diagnostic testing for every patient diagnosed with cancer.
Over the past 5 years, SHEPHERD Therapeutics developed DELVE, a next-generation precision-oncology platform that integrates bioinformatics, machine learning, and mathematics to identify mechanisms for drug response and resistance in patients with rare cancers and potential new single-drug and multidrug combinations to treat those cancers. Earlier this year, we partnered with Mayo Clinic clinicians and researchers to use the platform to advance research in rhabdomyosarcoma, a rare pediatric cancer that affects between 400 and 500 children and adolescents each year in the United States and has a 5-year survival rate of about 70%.3 Plans are currently under way to collaborate with several other academic research institutions to find new opportunities in the discovery of treatments for rare cancers, which collectively are more common than breast, colon, lung, or prostate cancer,2 so rare isn’t so rare.
Making a Difference Together
I am so fortunate to have survived this cancer, but I know that many others are not so lucky. I don’t know if the work I am doing will save me from a recurrence, but it is my hope it will lead to more effective treatments and even cures for other survivors with rare cancers. My message to every patient with a rare cancer is, you are not alone. Together, we are making a difference in advancing research that will, hopefully, lead to innovative treatment options and improved outcomes for all patients.
Founder and Chief Executive Officer of SHEPHERD Therapeutics, Mr. Hysong lives in Lexington, Kentucky. He is a member of the Forbes 30 Under 30 Class of 2017.
Editor’s Note: Columns in the Patient’s Corner are based solely on information The ASCO Post received from patients and should be considered anecdotal.
1. Cancer.Net: Adenoid Cystic Carcinoma: Statistics. Available at www.cancer.net/cancer-types/adenoid-cystic-carcinoma/statistics. Accessed March 18, 2021.
2. National Cancer Institute: The International Rare Cancer Initiative. Available at www.cancer.gov/about-nci/organization/cgh/research/irci. Accessed March 18, 2021.
3. American Cancer Society: Key Statistics for Rhabdomyosarcoma. Available at www.cancer.org/cancer/rhabdomyosarcoma/about/key-statistics.html. Accessed March 18, 2021.