Muriel Linetsky is a woman of action. When she first was diagnosed with uterine cancer in 2021 and underwent a partial hysterectomy, she was surprised not to get any real follow-up from her medical team, or guidance on what to do next. In her words, she was determined to figure out, “How to deal with this crap,” and she began searching uterine cancer resources online.
In quick order, she found SHARE Cancer Support, called our Support Line, spoke to Nefa-Tari Moore, and joined a Support Group for those recently diagnosed and living with uterine cancer. Muriel says this was her first step toward saving herself. She was wondering, “How do I get through this? How do I take care of myself and my family?” Muriel is the caretaker for her disabled adult son, and needed to navigate not only her own diagnosis, but his care and treatment schedule too. He is a smart, agreeable guy, but he needs a lot of support, himself.
In her Support Group, Muriel learned about many of the issues facing the women she came to know, including multiple cancer diagnoses in the same family. Each member got a chance to talk through their personal challenges, not only with the disease and their treatments, but also with how cancer was affecting their whole families. Muriel found the group became a good sounding board as she figured out her own path forward. Not only could they listen to her and provide emotional support, but they also had insights into various treatment options. She made a real connection with one of the group members in West Virginia, and they often texted each other to keep in touch about their experiences and how they were doing. And Nefa-Tari was regularly in touch to help her navigate her journey. She explained that it not only felt reassuring to get support from people who really cared, but that she felt good about being able to provide a shoulder to lean on for others.
More recently, Muriel found learnings from SHARE support services particularly helpful with her reoccurrences. She felt extreme pain in September of 2023, which was quickly misdiagnosed as a hematoma. She was sure it was something more, and ultimately insisted on appointments with four different doctors before getting a correct diagnosis of a reoccurrence. “SHARE helped me understand just how important it is to advocate for yourself,” she said. She even met with a review board at the hospital to ensure they better taught medical students the importance of looking for reoccurrences in gynecologic cancer patients.
“I think it is important to walk into each doctor’s appointment informed, and with good questions,” Muriel explains. She welcomes everyone who has been diagnosed or is caring for someone with breast or gynecologic cancer to take full advantage of SHARE’s resources, to find a family of support, and the knowledge to do just that!
