When the Leonard P. Zakim Center for Integrative Therapies’ Practice Manager Sara Menendez, LAT, ATC, learned she had Lynch syndrome at age 30, she had dozens of questions.
A hereditary condition, Lynch syndrome raises a person’s risk for cancer in several organs including the colon, endometrium, ovaries, and skin. Suddenly faced with this new information, Menendez felt overwhelmed until she turned to Dana-Farber’s network of centers and clinics that work to support people like her who have an elevated risk for cancer for a variety of reasons.
“The more I learned about my condition, the more I realized it was a great thing for me to know,” Menendez says. “Had I not found out, I wouldn’t have access to all these resources.”
In the Lynch Syndrome Center, clinicians specializing in the condition were able to give her information and refer her to the necessary experts across Dana-Farber. This is how she came to the Centers for Early Detection and Interception of Gynecological Cancers.
Because of her higher risk for ovarian and uterine cancers, she needed specialized information about screening and prevention. Menendez met with gynecologic surgeon, Colleen Feltmate, MD, and physician assistant, Arianna Maselli, PA-C.
For every patient, they conduct a kind of individual risk assessment based on several factors including pregnancy and birth control along with personal and gynecologic histories. Maselli describes their approach as tailored.
“It’s very important to really listen to each patient to see where they are in their journey with cancer risk,” she says. Then she walks them through the next steps methodically, avoiding what she calls, “a fire hydrant explosion of information.”
Years ago, Maselli was on the receiving end of this information. When she was a teenager, her mother was diagnosed with ovarian cancer and genetic testing revealed her mother carried a mutation on the BRCA1 gene, a factor connected with an elevated risk of gynecologic and breast cancers. At 22, Maselli also underwent genetic testing at Dana-Farber and was found to have the same condition. She had many of the same conversations with trusted providers that she now has with patients every day. As she gets older, decisions about preventive surgery loom.
“The thing I’ve held onto that’s brought me comfort is that I have all of the information available,” she says. “My goal is to give my patients the same power to make their own decisions.”
Everyone comes to their appointment with a different background and level of knowledge. Even for Menendez, who had worked at Dana-Farber for years, much of this was new. She and Maselli discussed screening recommendations based on her risk, including yearly biopsies of the uterine lining, which are typically performed in the office without sedation.
Menendez was unsure: What did the procedure entail? What did she have to do before? How long does the recovery take?
Maselli was there to answer every question. “She was so welcoming and comforting and knowledgeable,” Menendez recalls of Maselli. She wound up getting the biopsy during that same appointment. “She empowered me,” she says.
Menendez also learned about preventive surgeries, how they could impact family planning, the genetic risks of having children, and options like in-vitro fertilization. Today, Menendez feels confident about her path forward.
“It’s not as daunting as you would think because of these Dana-Farber programs,” she says. “There is a reassurance that Dana-Farber has got you. If something pops up, they will be there.”
It is an ethos Menendez seeks to bring to her work in the Zakim Center and as an advocate seeking to raise awareness. “This experience has given me some more perspective on all that our patients have to go through,” she says. “I think back to when I learned I had Lynch and how scary that was.”
Her words of advice: “Do one thing at a time. It’s all important, but setting priorities can help you feel less overwhelmed. And don’t be afraid to ask the question that’s on your mind no matter how big or small.”
Maselli agrees with Menendez’s approach, stressing the importance of patience.
“By knowing your cancer risk, you are already ahead of the game,” Maselli says. “Decisions about prevention do not need to be rushed. Take all the time you need to make the right choices for you.”