The Experiences of Women with Ovarian Cancer: From the First Symptoms Through Repeated Courses of Chemotherapy

The toll of ovarian cancer (OC) on women is substantial. Globally, it is the 7th most common cancer, and 8th most common cause of death from cancer in women.¹ The patient journey starts with its first symptoms and continues through its diagnosis; treatment; likely retreatment; and if treatment is successful, survivorship. The diagnosis of OC carries a poor prognosis because of the advanced stage in which it is often diagnosed and because it affects mostly older, postmenopausal women. This late-stage diagnosis in OC is a result of its lacking any specific symptoms in its early stages.² Patients’ thoughts and feelings surrounding the first OC symptoms had not been explored until an interview study was recently conducted in Germany.² In the study, many of the women seemed to gradually work their way through similar phases of symptom dismissal, recognition, and finally acknowledgment. Initially, the patients seemed to attribute their symptoms to normal bodily changes (ie, aging, weight gain, postmenopausal bleeding).² Next, patients proceeded into a combination of still normalizing their symptoms while subjugating any concerns about the symptoms to social obligations (ie, they prioritized family needs over their own healthcare).² Finally, it had been supposed that there must be a trigger symptom spurring the women to seek medical care, but the study found instead that these patients experienced a gradual evolution of thoughts and emotions whereby they eventually could no longer dismiss their symptoms.²

After a diagnosis of OC, a woman will typically receive more than one course of chemotherapy, which can impose not only toxic physical effects but also a decline in her mental health. Several studies have surveyed the OC survivor experience, but a recent study focused on the mental health of OC patients before, during, and after chemotherapy.³ The study found that anxiety tended to be greater for patients at the start of chemotherapy than it did after chemotherapy, and that anxiety was influenced by a patient’s occupation, her finances, and by her insurance policy.³ In another measure of mental health, the study found high levels of depression in patients throughout their treatment, with no noticeable change between the treatment’s start and end.³ A patient’s social support network, including the support of family and friends, lessened the mental distress she experienced when undergoing chemotherapy.³

After the initial course of chemotherapy, some women may be eligible for maintenance therapy with a poly (ADP ribose) polymerase (PARP) inhibitor if their tumors have completely or partially responded to platinum-based chemotherapy treatments. Although PARP maintenance therapy has been shown to yield more favorable outcomes compared with placebo for women with BRCA-mutated OC, patients may eventually experience disease progression.^4-6

Toxicities associated with chemotherapy may also affect patient expectations. In a recent survey, patients who had tolerated initial lines of chemotherapy well, or who thought that the chances of survival would increase, were willing to undergo the toxic effects of another round of chemotherapy, even when it gave their healthcare providers pause.⁷ However, once the toxic effects of chemotherapy became unbearable for a patient, the study found that her expectations and goals would often transition to a preference for palliative care.⁷

In terms of how life and lifestyle factors affect the OC experience, education level, age, activity level, and obesity all influence patients’ experience of OC and its severity. A study of OC survivors found that younger, educated patients—often young professionals and/or mothers—tended to be more affected by insomnia, fatigue, and mood disorders, symptoms likely caused or aggravated by sleep deprivation.⁸ Some symptoms, such as insomnia and fatigue, were found to be shared by OC patients in different groups. For example, while overweight or obese patients experienced insomnia and fatigue similar to the young/educated group, they also experienced an overall poorer quality of life along with neurologic symptoms.⁸

One theme running through these studies of women’s experiences in various stages of OC is that of the critical importance of healthcare team communication about what the patient can expect from OC, chemotherapy, and from her prognosis.

References

1. World Ovarian Cancer Coalition. The World Ovarian Cancer Coalition Atlas: Global Trends in Incidence, Mortality and Survival. 2018:10. https://worldovariancancercoalition.org/wp-content/uploads/2018/10/THE-WORLD-OVARIAN-CANCER-COALITION-ATLAS-2018.pdf. Accessed December 4, 2019.
2. Brandner S, Müller-Nordhorn J, Stritter W, et al. Symptomization and triggering processes: ovarian cancer patients’ narratives on pre-diagnostic sensation experiences and the initiation of healthcare seeking. Soc Sci Med. 2014;119:123-130.
3. Wen Q, Shao Z, Zhang P, et al. Mental distress, quality of life and social support in recurrent ovarian cancer patients during active chemotherapy. Eur J Obstet Gynecol Reprod Biol. 2017;216:85-91.
4. Lynparza [package insert]. Wilmington, DE: AstraZeneca Pharmaceuticals LP; 2019.
5. Rubraca [package insert]. Boulder, CO: Clovis Oncology, Inc; 2018.
6. Zejula [package insert]. Waltham, MA: TESARO, Inc; 2019
7. PEBC’s Ovarian Oncology Guidelines Group. A systematic review of patient values, preferences and expectations for the treatment of recurrent ovarian cancer. Gynecol Oncol. 2017;146(2):392-398.
8. Webber K, Carolus E, Mileshkin L, et al. OVQUEST - Life after the diagnosis and treatment of ovarian cancer - An international survey of symptoms and concerns in ovarian cancer survivors. Gynecol Oncol. 2019;155(1):126-134.