Part of the Smart Patients Living With It series, this conversation explores what happens when active treatment or surveillance ends, and how to prepare for what comes next. Big thanks to our discussion facilitators – Dee Sparacio, an ovarian cancer survivor since 2005 and a longtime research advocate (Women of Teal), and Meg McQuarrie, co-founder and Executive Director of the Elixir Fund.
Some of the hardest moments in cancer care come after cancer stops. While it's a relief to have appointments thin out, it's jarring to hear your specialist say, "Your primary care provider can take over now." Suddenly the structure that shaped your life vanishes. As one patient put it, “It felt as though a security blanket had been whisked out from under me.”
Shifting to post-cancer life often leaves people feeling uncertain about what to do next. When Dee and Meg shared their experiences, our community echoed their sentiments:
“Nobody has ever discussed survivorship with me.”
"I don't know what I want help with, since I'm physically ok right now."
“What is a survivorship plan?”
Most people lack guidance for this transition, and many even struggle with the term “survivor” or “survivorship.” The National Cancer Institute defines a survivor as anyone with cancer from the day of diagnosis until the end of life. That broad span of experiences is seldom a patient's definition of being a survivor.
Newly-diagnosed patients rarely feel like survivors. Those on maintenance therapy often prefer terms like "thriver" or "continuer." One member with stage 3 pancreatic cancer, who assumed survival meant being cancer-free, described her reality as simply "off treatment and watching with scans every three months." Although Dee uses the word "survivor" with clinicians because it's their language, she believes people should use whatever term fits them best.
Survivorship is about much more than cancer status. It is raising kids, working, navigating finances, and creating a "new normal" while managing the ever-present fear of recurrence.
Healing takes time. In her first year of remission, Dee wouldn't buy a winter coat because she didn't think she would live to wear it. It took two years for her to start planning for the future again. Adopting a dog made her get dressed and out the door every day. Soon she began advocating for ovarian cancer funding, finding a community of women who supported her.
Other members find their footing differently. The member with pancreatic cancer leans on her hospital social worker and focuses on exercise, nutrition, and meditation. For Meg, caring for her brother changed her life's direction entirely, teaching her to live in the moment with deeper gratitude.
“I was really touched by the fact that the conversation kept going after our week. I also learned a lot, particularly about how the term “survivor” really doesn’t seem to resonate with people. It was also important to hear that so many feel lost and as if they are navigating the system on their own. This will definitely impact the work that Dee and I are doing here in NJ.”
No matter what you call this phase, it helps to have a plan. A Survivorship Care Plan acts as the bridge between active treatment and everything that comes after. Based on your specific treatment, it outlines what comes next: which tests you need, how often to get them, which late side effects to watch for, who to call, and useful resources. The patient is the primary navigator of this transition, but it's a team effort. For Dee, who did not get a survivorship plan on her initial diagnosis, her primary care physician (PCP) acts as an essential anchor, keeping her on track for vital screenings and asking about her oncology test results.
Because specialists rarely see each other’s records, both Dee and Meg learned to print and carry their own lab results to every appointment. For Meg’s brother, those printed papers prevented critical delays in his treatment.
Taking control of your transition is challenging. Preparation helps. Click on the below image to access a toolbox to help you take charge of your care.
Thank you to Dee and Meg for sharing their experience and expertise with our community!