PHILADELPHIA — August 5, 2021 — A new survey from Health Union reveals that while many people living with advanced ovarian cancer currently consider their condition under control and have a positive view of many aspects of the patient journey, they maintain considerable frustration about the ineffectual testing and screening process. The inaugural Advanced Ovarian Cancer In America survey illuminates the perspectives and experiences of people impacted by stage 3 and stage 4 ovarian cancer.
These findings also support and fuel content and engagement for the recent launch of AdvancedOvarianCancer.net, Health Union’s 33rd condition-specific online health community.
Compared to people in early stages of ovarian cancer – when cancerous cells develop in, on, or near one or both ovaries – people living with advanced ovarian cancer experience a metastasis, or spreading, of the cancer to other parts of the body, often quickly.
However, despite the metastatic nature of advanced ovarian cancer and the various symptoms and quality of life impacts experienced, Advanced Ovarian Cancer In America survey respondents are mostly positive about various aspects of living with the condition, including the impact of treatment and relationships with their healthcare professionals. Specifically, 63% of respondents said they feel their ovarian cancer is under control on their current treatment plan.
The impact of treatment is seen in looking at the initial and current diagnosis stages. While 96% of respondents were initially diagnosed with an advanced stage of ovarian cancer, the amount of respondents currently diagnosed with an advanced stage is 55%. Specifically, 20% of respondents were initially diagnosed at stage 4 and 76% were initially diagnosed at stage 3. Currently, 26% are diagnosed with stage 4 and 29% are diagnosed with stage 3, while 35% are in remission and an extra 10% don’t know their current stage.
Respondents also tend to feel positively about their HCP relationships. HCPs – primarily gynecologic oncologists, as well as medical oncologists and other professionals – receive exceedingly high marks across the board. At least 80% of respondents who currently see an HCP said they felt those individuals provide excellent care, care about them as people, are thorough, listen to them and are easy to talk to. Respondents seem to be overwhelmingly positive about treatment-related communications, with 86% saying their HCP clearly explains treatment options. Similarly, more than eight in 10 respondents said they had received adequate information to make decisions about treatment or surgery.
“A good ovarian cancer provider has to be willing to listen and willing to have candid and honest conversations with their patient,” said AdvancedOvarianCancer.net patient advocate ShaRhonda Wise. “I truly feel the treatment team can make or break the patient. For me, having multiple physicians that were willing to take time to listen to my concerns helped put me at ease. It gave me encouragement and helped me trust their treatment plan.”
Despite these mostly positive experiences, respondents pinpoint one consistently frustrating aspect of the advanced ovarian cancer patient journey: the screening and detection process. Currently, there is not a specific, or effective, screening test for early detection of ovarian cancer, a point about which 82% of respondents expressed frustration.
Due to the nature of the condition, this leads many to be diagnosed only once they are in advanced stages and experiencing related symptoms. In fact, only 1% of respondents said their ovarian cancer was detected via a screening test before symptoms began. Meanwhile, three-fourths of respondents had their cancer detected after visiting an HCP due to symptoms, and 15% had their condition discovered incidentally through an unrelated medical activity, such as a routine medical exam or unrelated surgery.
