Being diagnosed with ovarian cancer is overwhelming. Being told your diagnosis is a rare ovarian cancer subtype can feel even more isolating. Many patients are left searching for answers, wondering what this means for treatment, prognosis, and long-term care.
In this Teal Talk episode, we sit down with gynecologic oncologist Dr. Rick Boulay of St. Luke’s University Health Network and survivor Anita to unpack what rare ovarian cancer subtypes really mean. Their conversation reminds us of an important truth. Ovarian cancer is not one disease, and rare does not mean unsupported.
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Ovarian cancer is not one disease
When people hear “ovarian cancer,” they often assume it refers to a single diagnosis. However, as Dr. Boulay explains, ovarian cancer includes many distinct diseases that behave differently and require different approaches.
“Ovarian cancer is not one cancer.”
Approximately 85–90 percent of ovarian cancers are epithelial carcinomas, which originate from the cells covering the ovary’s surface. Within this category are subtypes such as serous, endometrioid, mucinous, and clear cell tumors, each with unique behavior and treatment responses.
Other ovarian cancers — including germ cell tumors (arising from egg-producing cells) and sex cord stromal tumors like granulosa cell tumors — account for 10 percent or less of malignant ovarian tumors and often require different treatment and surveillance strategies.
“These tumor types are different. They behave differently, they respond differently to treatment and surgery.”
Understanding the subtype matters because it influences how aggressively a cancer grows, how it spreads, and how it is treated.
💡 What to know
Ovarian cancer includes a range of cancers that make up most diagnoses, while germ cell and stromal tumors are much rarer and often have different symptoms and outcomes.
Unsure how ovarian cancer types and stages differ?
Explore our types and stages of ovarian cancer resource to better understand your diagnosis.
Why rare ovarian cancer subtypes can be diagnosed differently
Rare ovarian cancer subtypes often present differently than the more common forms. Some are discovered through hormone-related symptoms rather than abdominal bloating or pain.
Dr. Boulay explains that hormone-producing tumors can cause unexpected changes.
“Those people can manifest by actually having too much excess hormone.”
Many sex cord stromal tumors, including granulosa cell tumors, produce hormones such as estrogen, which can lead to symptoms like abnormal bleeding or breast tenderness.
“It doesn’t have to be too many cells. I mean, it can be a small number of cells doing that.”
Because symptoms differ, diagnosis can look very different from patient to patient.
💡 What to know
Sex cord stromal tumors — including hormones-producing tumors — can cause symptoms related to estrogen or androgen excess, like unexplained bleeding or hair growth.
Unsure whether symptoms are related to ovarian cancer?
Our ovarian cancer symptom diary can help you track patterns and share them with your doctor.
Borderline tumors and individualized treatment
Some ovarian tumors fall into a category known as borderline tumors, also called tumors of low malignant potential. These tumors can resemble cancer cells under a microscope but tend to grow more slowly and behave less aggressively.
“They look like a cancer, but they don’t act like one.”
Borderline tumors are often treated with surgery alone. Chemotherapy is not always needed, especially when the tumor is fully removed and has not invaded surrounding tissue.
“Because it’s a borderline tumor, she does not need any treatment. And may not ever again.”
This distinction is important. It reinforces why accurate pathology and subtype identification are critical to avoiding unnecessary treatment.
💡 What to know
According to the National Cancer Institute, borderline ovarian tumors generally have a favorable outlook and are often managed with surgery rather than chemotherapy.
Recently diagnosed and not sure where to start?
Check out our programs and resources for those newly diagnosed with ovarian cancer.
Living with a rare diagnosis: Anita’s story
For Anita, being diagnosed with a granulosa cell tumor came with both reassurance and responsibility.
“You need to manage a chronic cancer. So I don’t have an incredibly serious form of cancer like some other women do, but you really have to manage it, otherwise the cancer will manage you.”
Granulosa cell tumors are rare, but they can recur many years after diagnosis. For this reason, long-term monitoring through scans and tumor markers is often recommended.
Community support became a critical part of Anita’s journey.
“It’s reassuring because you don’t feel like you’re alone.”
Through NOCC and Team Teal, Anita found connection, purpose, and strength even through recurrence.
💡 What to know
The National Cancer Institute notes that granulosa cell tumors can recur long after initial treatment, making long-term follow-up an important part of care.
Looking for others who understand a rare ovarian cancer diagnosis?
Explore NOCC survivor and caregiver support programs.
Conclusion
Rare ovarian cancer subtypes may be uncommon, but the people living with them are not alone. As this Teal Talk episode reminds us, knowledge empowers patients, individualized care improves outcomes, and community strengthens resilience.
At NOCC, we believe that every diagnosis deserves understanding, support, and hope.
What you can do right now
- Looking for ovarian cancer education? Visit our Resource Library.
- Need emotional or peer support? Connect through NOCC’s Support Services.
- Ready to make an impact? Explore ways that you can support NOCC’s mission.
Frequently asked questions about rare ovarian cancer subtypes
What does it mean if my ovarian cancer is rare?
It means your cancer may behave differently and require a more tailored treatment plan.
Are rare ovarian cancer subtypes treated the same way as common ones?
No. Treatment depends on tumor type, behavior, and hormone sensitivity.
Do rare ovarian cancers always need chemotherapy?
No. Some subtypes, including granulosa cell tumors and borderline tumors, may not require chemotherapy.
Can rare ovarian cancers come back years later?
Yes. Some rare subtypes can recur many years after diagnosis.
How can I find support specific to my diagnosis?
Patient communities, advocacy groups, and organizations like NOCC can help connect you with others.
