Treatment Planning & the Value in Centering Patient Voices
- A patient survey presented at the 2026 Society of Gynecologic Oncology meeting found that many women with endometrial cancer felt the burden of chemotherapy reached far beyond the infusion chair, and many expressed that they wanted more time to discuss options and preferences with their providers.
- According to the survey, 70% of patients felt the burden of chemotherapy treatment was almost as much as the burden of the disease itself, and 71% said they would prefer not to receive chemotherapy again in the future.
- “What came through in the key findings of the study was that chemo was a burden to women in more ways than one,” Adrienne Moore, an endometrial cancer survivor and president of the Endometrial Cancer Action Network for African-Americans, says.
- The availability of newer treatment options means the conversations between patients and doctors need to evolve, and should include not only what may treat the cancer, but how each option may affect daily life.
- Patients should ask directly about side effects, timing, work and family responsibilities, and whether other treatment approaches may be appropriate.
Endometrial cancer is the most common gynecologic cancer in the United States. It starts in the lining of the uterus, called the endometrium, and abnormal vaginal bleeding is often the first warning sign. This irregular bleeding is the most common presenting sign, and diagnosis typically requires sampling the uterine lining through an endometrial biopsy or related procedure, according to the National Cancer Institute.
Read More- 70% of patients said the burden of chemotherapy treatment was almost as much as the burden of the disease itself.
- 71% said they would prefer not to receive chemotherapy again in the future.
- Hair loss was reported by 95% of patients, and long-term effects included fatigue, neuropathy (nerve damage that can cause numbness, tingling, or pain), and difficulty concentrating or remembering.
- Nearly 80% wanted their providers to spend more time discussing options and what matters in their lives.
For Adrienne Moore, an endometrial cancer survivor and president of the Endometrial Cancer Action Network for African-Americans, the numbers reflect something deeply personal.
“What came through in the key findings of the study was that chemo was a burden to women in more ways than one,” Moore says. “It wasn’t just having the infusions, it was the things that came along with it.”
Chemotherapy can be lifesaving and remains an important part of care for many people with endometrial cancer, but patients are also living full lives around treatment. This might include caring for children, working, paying bills, arranging transportation, managing fatigue, and trying to preserve a sense of identity, all of which can be made more difficult when dealing with side effects.
Working Towards Shared Decision-Making
Moore describes how treatment can affect the most visible parts of a person’s life. “Women will prefer not to lose their hair. Women will prefer not to lose their identity,” she says.
She also points to nausea, neuropathy, time in the hospital, income loss, and medical bills as burdens that can shape whether someone can complete treatment.
The message of this survey should be taken as a practical paradigm. Shared decision-making means the doctor brings medical expertise, but the patient brings the reality of her own life and what she can realistically take on.
The survey also found that only about 2 in 5 patients reported sharing decision-making equally with their doctor, while 79% wanted their provider to spend more time discussing what mattered to them.
This is especially important now because treatment for advanced or recurrent endometrial cancer has changed. In 2024, the FDA approved pembrolizumab with carboplatin and paclitaxel chemotherapy, followed by pembrolizumab alone, for adults with primary advanced or recurrent endometrial carcinoma. The FDA also expanded approval of dostarlimab with carboplatin and paclitaxel, followed by dostarlimab alone, for adults with primary advanced or recurrent endometrial cancer.
These treatments are not “easy” options, and they are not right for everyone. They can have serious side effects. But they also illustrate why it’s important for patients and doctors to have open and candid conversations about options.
It’s also critical for patients to ask whether their cancer has been tested for biomarkers, such as mismatch repair status, a tumor feature that can help doctors decide whether immunotherapy may be useful.
Moore’s central message is that information gives patients power. “We are only empowered by the information we are given,” she says, adding, “One size does not always fit all.”
Questions To Ask Your Doctor
- What stage and type of endometrial cancer do I have?
- What is the goal of this treatment?
- Is chemotherapy the only option, or are there other treatments I should know about?
- What side effects are most likely with this treatment?
- How could this treatment affect my work, family responsibilities, sex life, energy, and ability to get around?
- What can we do early to help with hair loss, nausea, fatigue, etc.?
- At what point should we revisit the plan if the side effects become too hard?
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