By Mary Caffrey
Delayed diagnoses. Symptoms that are dismissed or misinterpreted. Feelings of anxiety because no one can offer a clear explanation for their condition.
These are just some of the experiences of women who have low-grade serous ovarian cancer (LGSOC), a rare and recurrent disease that is more commonly seen among younger women, compared with high-grade serous ovarian cancer that is typically diagnosed between ages 45 and 55 years. An online survey unveiled November 7, 2023, has outlined experiences of these patients for the first time.1
LGSOC is less common and well known, but when it strikes it is associated with slow-growing tumors and high mortality rates. The survey, by Verastem Oncology, highlighted experiences of the younger respondents—those aged 18 to 49 years—who were more likely than those aged at least 50 years to report their symptoms being misdiagnosed or dismissed by a physician.
The survey by The Harris Poll was conducted on behalf of the LGSOC Patient Impact Advisory Committee, a collaboration that includes the STAAR Ovarian Cancer Foundation (STAAR), Cure Our Ovarian Cancer, and the World Ovarian Cancer Coalition. Among the findings:
- Overall, 81% of those surveyed had symptoms, and these women reported it took an average of nearly 3 years to get an accurate diagnosis.
- Those surveyed often reported that their trajectory to an accurate diagnosis was difficult (73%) or frustrating (68%), and 68% who experienced symptoms experienced a misdiagnosis.
- Nearly two-thirds (66%) said their symptoms were dismissed by a health care provider.
- With regard to educating others about LGSOC, 87% said they want women to know that symptoms can be misdiagnosed.
- Overall, 82% reported “it’s important to listen to your body and seek medical attention as soon as possible.”
LGSOC was not classified as a separate disease by the World Health Organization until 2014, and it still lacks specific treatments even though 85% of patients with this diagnosis have their cancer return after remission.
“Not only is LGSOC a rare disease, its classification as a distinct type of ovarian cancer was established within the past 10 years. With no medicines specifically approved by the [FDA] for LGSOC, along with limited research and published data about the patient experience and its impact, managing this disease is challenging for health care professionals and patients,” said David Gershenson, MD, an expert in rare ovarian cancers at The University of Texas MD Anderson Cancer Center and an LGSOC Patient Impact Advisory Committee member.
“This survey is an important collective effort to gather valuable insights and opinions to help better serve those living with LGSOC. As a physician dedicated to finding better ways to manage LGSOC, I witness how the long journey to diagnosis and the uncertainty of this disease takes a toll on my patients and their loved ones. These survey results underscore the urgency of educating on this unique form of ovarian cancer and provide important information to guide that effort.”
How the Survey Was Conducted
Experts in diagnosing and treating LGSOC as well as patient advocates worked with Verastem Oncology to develop the survey, which took 15 minutes to complete in an online format. Between July 31 and August 29, 2023, the survey was completed by 186 women 18 years or older who had received a diagnosis of LGSOC. Most women came from the United States (106 respondents), the United Kingdom (33), Canada (15), Australia (8), and New Zealand (8). According to the report details, the data are not weighted and only represent the individuals who took the survey.
The survey covered patient knowledge, burden and impact of disease, and barriers to treatment; it shed light on mental, emotional, and physical health effects of living with LGSOC, as well as the economic consequences.
In addition to the key findings, the survey reveals the barriers to care that women encountered:
- Virtually none of the women had heard of LGSOC prior to their diagnosis and many said there remains confusion about the difference between LGSOC and high-grade serous ovarian cancer.
- Overall, 65% said if they had known more about LGSOC they would have been diagnosed more quickly.
- The name “low grade” is misinterpreted by some patients as a less severe form of cancer; however, the fact that the tumor may be slow growing does not make it less severe, and 4 in 10 patients do not realize this.
- Overall, 27% do not realize that LGSOC is more likely to affect younger patients than other types of ovarian cancer.
Although 3 in 4 felt the health care professional who diagnosed them was knowledgeable, only 2 in 5 (40%) felt the person was “very knowledgeable.” Those diagnosed by an oncologist (vs a primary care physician) were more likely to say the person was very knowledgeable (50% vs 23%) and were also more likely to say their physician did a good job of answering their questions (76% vs 53%).
Women with LGSOC say the generalists or primary care providers who are the first-line health care providers seeing patients who may have LGSOC need more information about symptoms so they can better identify possible cases of LGSOC and refer patients to a gynecologic oncologist.
“Since my LGSOC diagnosis, it has been so important to have my community around me. Although LGSOC is classified as a rare cancer, we have seen this community come together to provide support for each other, raise awareness of symptoms, and improve outcomes,” Nicole Andrews, board chair, STAAR Ovarian Cancer Foundation, and a member of the LGSOC Patient Impact Advisory Committee, said in a statement released with the survey results.
“What this survey reveals is critical because there are too many women like me who have had to navigate this experience on their own, with very few resources and low awareness of the disease. Having this measurable, actionable data that shed new light on the challenges we face because of LGSOC is an important step toward education and awareness that can hopefully improve care.”
First-of-its-kind, multi-national patient impact survey reveals unique challenges and gaps in care for patients with low-grade serous ovarian cancer. News release. Verastem Oncology. November 7, 2023. Accessed November 9, 2023. https://bit.ly/40zv25I
This article was published by: AJMC.