Seeking a listening ear, one ovarian cancer survivor unexpectedly creates a virtual network of women supporting each other while fighting cancer
Having to witness a relative receive a cancer diagnosis and go through treatment can be a wake-up call. For some, their mind may shift to a prevention mode to avoid hearing a diagnosis of their own in the future. Sara Ianitelli’s plan was simple after her mom was diagnosed with breast cancer at 33.
“My whole life, I had a plan,” the Macomb resident explained. “I was 100% ready for breast cancer.”
Her plan led her to the Women’s Wellness Clinic at Karmanos Cancer Center in Detroit for routine mammograms. However, it was not a breast cancer diagnosis that Ianitelli would have to face.
Ovarian cancer: Two words she didn’t expect to hear.
During a checkup in 2018 to ensure her intrauterine device (IUD) was positioned correctly, her gynecologist noticed a cyst on her ovary. Her physician wanted to monitor the cyst every six months in case of any changes.
A year later, in June 2019, there was a change. Ianitelli’s gynecologist referred her to Ira Winer, M.D., Ph.D., FACOG, gynecologic oncologist, member of the Gynecologic Oncology and Phase 1 Clinical Trials Multidisciplinary Teams at Karmanos. At 34 years old, Ianitelli was diagnosed with Stage 3 clear cell high-grade ovarian cancer. Dr. Winer recommended surgery.
Unfortunately, her debulking surgery required the removal of both her ovaries, fallopian tubes and her uterus. Following surgery, Ianitelli went through chemotherapy at Karmanos. Due to her tumor type, she qualified for a chemotherapy maintenance trial. She started the clinical trial in January 2020 and finished the treatment portion in 2022.
Ianitelli continues to visit Karmanos’ Detroit location for follow-up care. As of December 2022, she has remained in remission from her cancer. Her follow-up appointments are conveniently located, as she is a nurse across the street at the Children’s Hospital.
“There have been times when my labs were off, and I would get my labs drawn on my lunch break,” said Ianitelli.
The relationships she has fostered with the staff at Karmanos during her lunch break appointments are not the only way her diagnosis changed her life. Being young and knowledgeable about her risk of breast cancer, Ianitelli suddenly had to learn about ovarian cancer.
“I didn’t know anything else — nothing about statistics or any of it. I was totally prepared for breast cancer,” said Ianitelli.
While researching ovarian cancer, she fell into a dark hole of information. She realized it was not common for women her age to get this diagnosis.
“A lot of the young women that get ovarian cancer would typically have more of an inheritable risk for that specific type of tumor,” said Dr. Winer. “But Sara had genetic testing completed, which came back negative and showed that she did not have anything that put her at an increased risk for this specific type of cancer.”
According to Dr. Winer, it is common for young women with this type of cancer to have a history of endometriosis, which can also increase their risk of ovarian cancer. Though she was never diagnosed with endometriosis, Ianitelli said she experienced heavy periods and severe cramping her whole life.
How Instagram brought a different experience to her cancer journey
Going through any cancer diagnosis can be challenging, which is why Karmanos offers multiple cancer support groups, counseling services, integrative therapy classes and individual sessions, education and more for patients, their families, friends and caregivers. Ianitelli took advantage of these opportunities, but there was just one thing she felt was missing – a connection with other young women going through the same type of ovarian cancer. Because her diagnosis was rare, she started sharing her cancer journey on social media. Her posts connected her to a flurry of women from across the country. These women are around her age and experiencing similar challenges with cancer.
“Through the first year of diagnosis, I had met some girls through the internet and then around January 2021, we had this giant group chat of 20 of us on my Instagram page,” said Ianitelli.
Soon, the group reached the maximum number of people allowed in a single Instagram group chat. Ianitelli, another cancer survivor from California and many other women diagnosed with ovarian cancer took it to the next level by making an official Instagram page titled “Young Ovarian Cancer Women.” At the end of 2022, the page garnered over 600 followers. Young Ovarian Cancer Women serves as a place for young women to learn how to navigate, not only being young adults but being young adults who also must adjust to having cancer.
“It’s a great group where you can throw out questions like, ‘hey, I have a question about this’ or ‘hey, has anyone had this done,’” said Ianitelli. “It’s very nice to see our differences, but it’s also nice to learn about how we manage the ups and downs we all go through, challenges that your other friends don’t even know about.”
The group of women usually meet over Zoom, sometimes covering specific topics each time or just hosting sessions to check in on each other. They recently met up for a group retreat in Nashville, allowing them to come together from states across the country.
Ianitelli reminds the women in her group and wants to remind other cancer patients that going through the motions on their journey is normal.
“It’s OK not to be OK. Deal with what you can deal with today.”
She also had some tips on staying motivated during treatment.
“I encourage everybody to do some physical activity. Movement helped me so much,” explained Ianitelli. “Working out was something I could do that was my choice. It was something I had control of; something I wanted to do and could control how I wanted to do it.”
She also recommends finding “your” people, whether through the internet or not. Finding people to be your rock can be grounding and uplifting through this process.
Click here to learn about the Karmanos support and education services available for patients, their family members, friends and caregivers.