As someone who has lived 35 years beyond an ovarian cancer diagnosis – and spend the past 23 years as Executive Director of Program at Red Door Community – I am, by every clinical definition, a “success story.” I am no longer in treatment. I am not actively “living with cancer.” And yet, my experience tells a different story – one that highlights a gap in care.
Like many long-term survivors, I continue to grapple with the lasting effects of cancer and its treatment- effects that show up in ways both visible and invisible: chronic fatigue; cognitive changes; shifts in my body without clear explanation; and concerns that surface years later.
At Red Door Community, we often say that the end of treatment is not the end of the cancer experience, but the beginning of a new and often unsupported phase.
That is why recent conversations around the proposed Comprehensive Cancer Survivorship Act matter.
The reality is this: our healthcare system often treats remission as the end of the journey, when it is actually the start of a different phase – one that lacks coordinated care, or consistent acknowledgment. Survivors are left on their own to connect the dots, researching risks, advocating for screenings, and trying to make sense of symptoms that fall outside standard protocols.
For younger survivors especially, this gap can feel isolating. There is an expectation to return to “normal,” while quietly carrying questions about your long-term health that few providers are equipped to answer.
The proposed legislation is an important step forward. It aims to establish standards for survivorship care, improve coordination, and recognize the long-term needs of a growing population of survivors. These are important steps.
But policy alone is not enough. We must also change the mindset. We need to stop defining survivorship solely by the absence of disease and start recognizing it as an ongoing, evolving experience that deserves attention and validation.
Red Door Community offers a space where lingering side effects are not dismissed. Where the emotional weight of survivorship is acknowledged and understood. Where the question isn’t “Aren’t you done?” but rather, “What do you need now?”
Reading about survivors like Katie Palay- who had to piece together her own follow-up care- feels both familiar and frustrating. We deserve care plans that follow us beyond treatment. Providers who understand the late effects of cancer therapies. Access to mental health support that reflects the unique experience of survivorship. And systems that recognize that being “cancer-free” does not mean being free from cancer’s impact.
Thirty-five years later, I am still learning how to live with what cancer left behind. That is not a failure of acceptance. It reflects reality.
Until survivorship care catches up with that reality, communities like Red Door Community will continue to fill the gap – offering a place where every part of survivorship is seen.
Because no one should navigate the “after” alone!
Written by: Migdalia Torres, LCSW-R Executive Director of Program
