2022 Honored Patient: Neesa
Seven years ago, Neesa was not feeling well. Our 2022 Honored Patient was overwhelmed with nausea and lethargicness, leading to an initial diagnosis of acid reflux. Not seeing improvements, and now struggling to maintain her weight, Neesa was then told she had celiac disease - an autoimmune disorder that occurs in genetically predisposed people where the ingestion of gluten leads to damage in the small intestine.
After changing her diet, removing gluten first and then dairy, Neesa was hopeful she would get back to being that sassy and fun-loving teenager she had been. She joined the high school soccer team, but immediately started gaining a substantial amount of weight and noticed her stomach protruding out much farther than normal. She struggled with stamina too, barely making it through the first half of a game before being completely exhausted and unable to continue.
Like many 16-year-old girls, Neesa was also having menstruation and reproductive health issues that were extremely painful and often times debilitating. Neesa was told not to worry as “women have irregularities.” Her “irregularities” and health issues continued to the point where she was unable to go to the bathroom any longer. After a night in the emergency room, the Fergus Falls, Minn., resident was finally sent to the Masonic Cancer Center in Minneapolis where it was discovered she had a four-and-a-half pound tumor in one of her ovaries.
A month later, Neesa had surgery to remove the tumor and began chemotherapy. After completing chemo and being declared "cancer free," Neesa enjoyed 3 ½ years in remission and was back to being that effervescent teenager everyone loved.
But then … a second tumor was found. This tumor was much different from the first as it was very aggressive and growing at hyperspeed. Only a week after discovering the second tumor, it had already attached to her bladder and emergency surgery was needed.
Doctors soon diagnosed Neesa with Sertoli-Leydig, a rare ovarian cancer that only three people in the entire world, on average, are diagnosed with annually. Sertoli-Leydig cancer cells produce and release testosterone which can cause the development of male characteristics including facial hair and a deep voice. These cell tumors are so rare that they account for less than 0.5% of all ovarian tumors found.
“I honestly laughed when Dr. (Peter) Argenta told me I had Sertoli-Leydig.” Neesa recalls. “I remember Dr. Argenta saying the odds of me having this rare form of cancer were less than being struck by lightning AND being attacked by a shark.”
After trying three different treatment plans, including having a hysterectomy, Dr. Argenta broached the idea with Neesa of meeting with Dr. Kris Ann Schultz - the Pine Tree Apple Tennis Classic Endowed Chair of Cancer and Blood Disorders Research at Children’s Minnesota and one of the leading Sertoli-Leydig researchers in the world.
“Of course I said I would meet with her,” Neesa said. “I could not believe one of the leading Sertoli-Leydig research doctors in the world was right down the road from me in St. Paul.”
Now 23 years old, Neesa and her boyfriend, Brody, who has been with her since first being diagnosed in high school, have moved to Moorhead, Minn. She continues her chemotherapy treatments both at home, taking three pills a day, and by receiving intravenous chemo once a week for three-weeks-on, one-week-off at the Roger Maris Cancer Center in Fargo, N.D. She also meets with Dr. Schultz every 2-3 months, but sadly, another spot has been found on her left pelvis, which could indicate the development of a third tumor. Only time will tell....
Still continuing to fight each day, Neesa - remarkably - remains incredibly strong and hopeful that more research can be done in hopes a cure can be found soon as she knows her life depends on it.
“I definitely have my good days and my bad days, and there are some days I do not know how I stay so positive,” Neesa said. “I have an incredible village helping me through all of this, especially my boyfriend’s mom Maranda. If I have one message to share, it is to live everyday like there is a tomorrow.”
After changing her diet, removing gluten first and then dairy, Neesa was hopeful she would get back to being that sassy and fun-loving teenager she had been. She joined the high school soccer team, but immediately started gaining a substantial amount of weight and noticed her stomach protruding out much farther than normal. She struggled with stamina too, barely making it through the first half of a game before being completely exhausted and unable to continue.
Like many 16-year-old girls, Neesa was also having menstruation and reproductive health issues that were extremely painful and often times debilitating. Neesa was told not to worry as “women have irregularities.” Her “irregularities” and health issues continued to the point where she was unable to go to the bathroom any longer. After a night in the emergency room, the Fergus Falls, Minn., resident was finally sent to the Masonic Cancer Center in Minneapolis where it was discovered she had a four-and-a-half pound tumor in one of her ovaries.
A month later, Neesa had surgery to remove the tumor and began chemotherapy. After completing chemo and being declared "cancer free," Neesa enjoyed 3 ½ years in remission and was back to being that effervescent teenager everyone loved.
But then … a second tumor was found. This tumor was much different from the first as it was very aggressive and growing at hyperspeed. Only a week after discovering the second tumor, it had already attached to her bladder and emergency surgery was needed.
Doctors soon diagnosed Neesa with Sertoli-Leydig, a rare ovarian cancer that only three people in the entire world, on average, are diagnosed with annually. Sertoli-Leydig cancer cells produce and release testosterone which can cause the development of male characteristics including facial hair and a deep voice. These cell tumors are so rare that they account for less than 0.5% of all ovarian tumors found.
“I honestly laughed when Dr. (Peter) Argenta told me I had Sertoli-Leydig.” Neesa recalls. “I remember Dr. Argenta saying the odds of me having this rare form of cancer were less than being struck by lightning AND being attacked by a shark.”
After trying three different treatment plans, including having a hysterectomy, Dr. Argenta broached the idea with Neesa of meeting with Dr. Kris Ann Schultz - the Pine Tree Apple Tennis Classic Endowed Chair of Cancer and Blood Disorders Research at Children’s Minnesota and one of the leading Sertoli-Leydig researchers in the world.
“Of course I said I would meet with her,” Neesa said. “I could not believe one of the leading Sertoli-Leydig research doctors in the world was right down the road from me in St. Paul.”
Now 23 years old, Neesa and her boyfriend, Brody, who has been with her since first being diagnosed in high school, have moved to Moorhead, Minn. She continues her chemotherapy treatments both at home, taking three pills a day, and by receiving intravenous chemo once a week for three-weeks-on, one-week-off at the Roger Maris Cancer Center in Fargo, N.D. She also meets with Dr. Schultz every 2-3 months, but sadly, another spot has been found on her left pelvis, which could indicate the development of a third tumor. Only time will tell....
Still continuing to fight each day, Neesa - remarkably - remains incredibly strong and hopeful that more research can be done in hopes a cure can be found soon as she knows her life depends on it.
“I definitely have my good days and my bad days, and there are some days I do not know how I stay so positive,” Neesa said. “I have an incredible village helping me through all of this, especially my boyfriend’s mom Maranda. If I have one message to share, it is to live everyday like there is a tomorrow.”