Reyna

Reyna used to be a very active person, but a car accident when she was 19 changed that. Not long after, Reyna started feeling pain in her hip. The first doctor she saw misdiagnosed her with hip bursitis, so she was very surprised when eventually she had a lump the size of a softball in her hip. Walking became difficult and her hip would lock making her demanding job even harder. Reyna believes she may have had a desmoid tumor in her hip for two years before it was officially diagnosed.

 “Living with a desmoid tumor has been the most life-changing experience…I guess the positive of all this is having to slow down and get to know myself and what my body is telling me. I have hope that things can get better.”

Gabe was diagnosed with a desmoid tumor in June 2021, after discovering a lump on his neck. At the time, the lump was not much bigger than the size of a walnut, but over time, the tumor grew. He has been through three different therapies with little to no improvement. The current treatment of weekly infusions of two chemotherapies, makes it difficult to continue to play the sport he loves. For as long as he can remember, Gabe has spent all of his free time in the gym playing basketball or watching his brother play basketball. He looked forward to the possibility of playing basketball at the college level after graduating high school. Now, the teen isn’t able to play as often and doesn’t have the same stamina or strength that he used to. Gabe recently stopped his latest treatment due to no change in his last MRI. He will now start his fourth option of oral chemo and cryoablation.

“I am a player, captain and continue to enjoy basketball. I am hopeful that one day, through continued awareness and research, a cure for desmoid tumors becomes available.”

The doctor joked that he had heard of fathers-to-be having sympathy cravings, but never growing a sympathy bump. However, the mood quickly changed as scans showed Jason had a mass the size of a volleyball in his abdomen that was tied to his bowels. That very night, Jason’s wife went into labor and they became first-time parents to a healthy little girl. Amidst the joy and chaos of having a new baby, Jason got a biopsy and was told he had a desmoid tumor. Less than a month after his daughter was born, Jason underwent major surgery. He lost a sizable portion of his large and small intestine, but doctors had to leave a tumor that was wrapped around his mesenteric artery. They also found that his abdomen was full of other small tumors they could not previously see on scans. Jason was put on a medical therapy but experienced significant side effects. He was finally able to tolerate the drug at a reduced dose and his tumors have been stable ever since. This year, Jason and his wife welcomed their third daughter and count their blessings every day. The confidence and stability offered through treatment, continued research, and alternative drug options allowed him to move forward with his life. 

“Despite all we’ve been through, I count my blessings every day. I’m aware that throughout my story the theme of luck appears regularly… I am equally as aware that not all patients are so lucky, and I’ll continue to advocate for all of us as strongly as I can.”

In early 2021, Ana was diagnosed with a desmoid tumor of the right clavicle area. With very little information available, she had many questions and concerns about the radical surgery being recommended by her physicians. Through research, she was able to find a sarcoma center in Spain and chose a more conservative treatment method to address the growth and pain from her tumor.

“On this journey, I have learned that we must fight, and now I see that our doctors need more training in these rare diseases [to be able to] give all the information and options to patients to make the decisions that make us feel the most good.”

In 2016, Charlotte began to complain of pain in her pelvic area. After several misdiagnoses, it was confirmed that Charlotte had a desmoid tumor. Charlotte’s mom Rebecca was up late each night searching the internet for answers. They traveled around Australia talking to different doctors and trying different treatments, many only available privately at significant cost. Unfortunately, multiple chemotherapies and procedures couldn’t stop the tumor growth. Out of therapeutic options, Charlotte underwent massive surgery to remove the tumor, which left her not only with abdominal mesh and lost stomach muscles, but with the inability to have children. Despite these life-changing challenges, Charlotte eventually returned to working with animals and is studying again. As a mother, Rebecca’s biggest struggle was the burden of feeling alone in being Charlotte’s advocate since doctors weren’t familiar with her disease.

“I felt a huge, often overwhelming, sense of responsibility to be thoroughly educated so that I could ensure my daughter got the best treatment available.”

Jigna was diagnosed with desmoid fibromatosis in March of 2016. She struggled to find appropriate treatment and a doctor who had experience with this rare disease. After two surgeries in 11 months, she turned down the possibility of a third. She started medical therapy with the support of her doctor. The side effects were difficult and the tumors continued to grow. In 2019, a severe fever nearly took her life, but she survived. Six months later, her MRI showed her tumor had reduced to a non-measurable nodule. It continues to be stable.

“My family, daughter and husband were a big support. Seeing my daughter, I was getting energy to fight this rare tumor. Today, I am working full-time [as a gynecologist] to serve my infertile patients. Smile on their face is the biggest energy booster for me.”