A Notebook and a Question
A Guide to Working with Your Gynecologic Cancer Care Team
Challenges Faced by Gynecologic Cancer Patients
A life-altering diagnosis demands not only answers but compassionate support and guidance. However, healthcare visits can feel hurried or overwhelming. Essential conversations often bear the brunt of the time-crunch, leaving patients without the support they deserve.
“I wrote down questions as they came to me in a small notebook. My oncologist really appreciated this. He would ask if he had answered all my questions.”
“I am 22 years out from initial diagnosis. I often thank [my doctor] for keeping me alive. One day, he said I kept myself alive.”
In a series of thoughtful discussions, our online community members affected by cervical, ovarian, uterine, vaginal, and vulvar cancers courageously shared their stories. They revealed the real-world obstacles they encounter, from financial strains that complicate treatment to rushed doctor-patient interactions to the daunting task of navigating treatment decisions and side effects. A clear pattern emerged from these diverse experiences: even with the best of intentions, our healthcare delivery frequently misses the mark in four critical areas.
1. Treatment decision-making barriers: This pressure to make swift, high-stakes choices with minimal information leaves many patients feeling overwhelmed and disempowered, especially given the expanding array of treatment options available today.
"The first doctor I saw said, 'I'll see you in two weeks in the operating room' after talking to me for less than five minutes."
2. Side effects management gaps: The profound physical and emotional impacts of gynecologic cancer treatment are too often left for patients to grapple with in isolation or through online peer support.
"They don't prepare you for the psychological effects... No doctors have been able to answer my simplest questions about sex after surgery."
3. Healthcare access challenges: Coordinating appointments, managing work and family obligations, and handling the sheer logistics of care can be as daunting as the treatment journey itself. Delays in starting therapy frequently stem not from chemotherapy fears but from the struggle to arrange work schedules or secure childcare.
"People don't give up because of the disease; they give up because of the healthcare system."
4. Limited molecular testing discussions: Cutting-edge diagnostics that could provide invaluable insights into a patient's gynecologic cancer remain unfamiliar to many.
"I don't know what molecular testing is and have never been offered genetic testing."
Recentering on Patient Priorities
Now imagine if, instead of expecting patients to conform to existing systems and conventions, we reoriented gynecologic cancer care delivery around what matters most to the individuals navigating this challenging path.
That's precisely what we set out to do.
Together with the Smart Patients gynecologic cancer community and Clinical Care Options, we've created the Guide to Working with Your Gynecologic Cancer Care Team—a tool designed to support patients in making shared and informed decisions alongside their care teams.
Shared decision-making (SDM) is a transformative approach that positions patients as active partners in determining their treatment course. It's a thoughtful, iterative process in which personal values, preferences, and life circumstances are given equal weight to medical expertise. SDM hinges on transparent communication about treatment possibilities, potential benefits and risks, and areas of uncertainty. It empowers patients to make informed choices aligned with their unique priorities and goals.
In gynecologic oncology, SDM takes on heightened significance. Treatment decisions often involve nuanced trade-offs related to quality of life, side effect profiles, fertility considerations, and long-term health outcomes. By ensuring that the selected treatment plan resonates with what each patient deems most important, SDM paves the way for greater treatment satisfaction, adherence, and overall well-being.
The Guide to Working with Your Gynecologic Cancer Care Team goes beyond a simple questionnaire. It's a carefully structured guide for fostering thorough, patient-centric treatment discussions. It helps patients organize their questions, apprehensions, and priorities, keeping their distinct needs at the forefront of every conversation.
Core Elements of the Guide to Working with Your Gynecologic Cancer Care Team
Clarifies your role in decisions: The tool invites patients to specify their preferred level of involvement in treatment decisions, from those who want to drive the process to those who favor relying on their doctor's guidance. This clarity enables more productive, personalized interactions.
Keeps track of key information: The tool provides a centralized place to record key details like biomarker results and treatment possibilities. This written log helps ensure critical information is properly discussed and understood.
Sets your personal priorities: Dedicated sections allow patients to rank their top concerns, such as managing side effects or balancing treatment with work responsibilities. This explicit prioritization helps align the care plan with each patient's distinct objectives.
Creates an action plan: The tool includes space to map out concrete next steps, such as additional testing, specialist referrals, and support services. This collaborative action planning provides a clear roadmap for the path ahead.
Bringing the Guide to Working with Your Gynecologic Cancer Care Team to Your Healthcare Team
You can access the tool here by clicking on the above image. We encourage you to use this resource to play an active, empowered role in shaping your care journey.
The adaptability of this tool allows for seamless integration into diverse care settings and timepoints:
Proactive preparation: You can fill out the tool before appointments to help set the agenda.
Navigator support: Some clinics have nurse navigators who can review the completed tool with you.
Revisit at anytime: The tool can be revisited and refined throughout treatment to accommodate any changes in priorities or circumstances.
We think this tool holds immense potential for transforming the gynecologic cancer care experience and envision a future where it's routinely provided to patients before appointments and seamlessly incorporated into electronic health records.
In the meantime, you can take charge of your care by coming prepared, staying informed about novel treatment options, and initiating conversations about cutting-edge therapies your providers may be less familiar with.
A Notebook, a Question and a Guide
The Guide to Working with Your Gynecologic Cancer Care Team aims to humanize gynecologic cancer care - to ensure that the care you receive aligns with your individual needs, values, and aspirations. It represents a meaningful step towards a more compassionate, person-centered approach to oncology care. One where you feel genuinely heard, supported, and in control.
Importantly, this tool was born out of stories like yours. We turned directly to our community members affected by ovarian, endometrial, cervical, and vulvar cancers, and you responded with remarkable candor and generosity. By sharing your lived experiences, you're helping bridge the chasm between the care patients currently receive and the care they deeply need and deserve. We're immensely grateful to you and our entire community for your courage and openness in forging a path toward more enlightened, patient-driven care.
At the end of the day, the true measure of gynecologic cancer care excellence isn't just treating the disease. It's about wholeheartedly supporting the person behind the diagnosis at every twist and turn of their uniquely personal journey. That’s what we're striving for, together.