How one woman became her own health advocate amid ovarian cancer
Posted: July 07, 2022 | Word Count: 2,799
Sponsored by GSK
Despite ovarian cancer striking all races at similar rates, Black Americans are 20% more likely to receive a late-stage diagnosis1 and 30% more likely to die from the disease than white Americans.2
The reasons are complex — a mix of biological, environmental and social factors.3
Obesity, certain genetic mutations, poor access to care and exposure to pollution all contribute to poor ovarian cancer outcomes. And all disproportionately strike the Black community.3
With the backdrop of these systemic disadvantages, rooted in hundreds of years of American history, an ambitious young Black woman finds herself faced with an insidious ovarian cancer diagnosis.
Dana is a paid spokesperson for GSK. This is Dana’s story and others’ may be different.
When Dana, 49, of Texas, was in her early 20s, she had big plans for herself and her young son. After being passed over for a promotion, she wanted to make some changes to start building the life of her dreams. She was going to move home to Missouri, where she had lined up a new job for herself and school for her son.
Before leaving for Missouri, she set up a number of appointments, one being her annual physical.
What started as a routine exam led to a follow-up with a gynecologist and ultimately surgery to explore some mysterious masses in her abdomen.
Surgeons ended up removing Dana’s uterus, an ovary, a fallopian tube and her appendix to hopefully capture all of the tumors. Dana awoke to this news in the surgical recovery room. Testing revealed the masses were malignant.
“I sat there in disbelief. I was 25 years old being told I had stage III ovarian cancer,” says Dana. “In my mind, cancer was a disease of the elderly, not a young woman’s disease, definitely not this young woman.”
Dana was not wrong — the median age of ovarian cancer diagnosis is 63 years old.4 But, as she learned firsthand, ovarian cancer can strike at any age.
Unfortunately, like Dana, most people with ovarian cancer are diagnosed at an advanced stage of disease, which generally translates to worse outcomes.5
Dana underwent four rounds of chemotherapy and ultimately received a clean bill of health. Although she never made it back to Missouri, she did earn her associate degree that year, and got married a year later. Life was looking up.
Sixteen years passed with no major health issues. Then, at age 43, an annual screening test revealed that her ovarian cancer came back, as it does in 85% of those with the disease.6
Again, Dana underwent chemotherapy. Again, she went into remission. Again, her cancer came back, this time a mere two years later. Another round of chemotherapy. Dana pushed through and continued to pursue her education, receiving her bachelor's and master's degrees in Psychology while in periods of remission.
An alternative to “watch and wait”
Observation, or “watch and wait,” was previously the only option for cases like Dana’s,7 but there are maintenance therapies available that may extend the time before the cancer comes back.8
One maintenance therapy option is ZEJULA (niraparib, 100mg capsules), an oral medicine known as a PARP inhibitor, which works by preventing cells from repairing their damaged DNA in both healthy cells and cancer cells.
ZEJULA is a prescription medicine used for the maintenance treatment of adults with advanced ovarian cancer, fallopian tube cancer, or primary peritoneal cancer that comes back. ZEJULA is used after the cancer has responded (complete or partial response) to treatment with platinum-based chemotherapy.
It is not known whether ZEJULA is safe and effective in children.
ZEJULA may cause serious side effects such as bone marrow problems called myelodysplastic syndrome (MDS) or a type of blood cancer called acute myeloid leukemia (AML), which may lead to death. Symptoms of low blood counts include weakness and can be a sign of serious bone marrow problems. Routine monitoring of blood counts is required. Contact your doctor for new bleeding, fever, or infection. New onset of bleeding could include bruising, bleeding more easily, or blood in urine or stool. High blood pressure is common and can become serious. Routine monitoring of blood pressure and heart rate is required. ZEJULA has been associated with Posterior Reversible Encephalopathy Syndrome (PRES), a brain condition. Tell your doctor if you have headache, vision changes, confusion, or seizure. Tell your doctor about all your medical conditions and medications, including liver problems and if you are pregnant or breastfeeding or plan to be. Some common side effects include nausea, low blood counts, tiredness, constipation, muscle and back pain, headache, and trouble sleeping.
Considering she had a positive response to her most recent round of platinum-based chemotherapy and her history with recurrence, Dana’s doctor suggested she give ZEJULA a try.
“I liked the idea of doing something active that might help delay the cancer from returning, instead of waiting and hoping for the best,” Dana says.
Initially, Dana did experience some side effects from ZEJULA, including stomach pains, nausea, diarrhea and fatigue, but after working with her doctor to adjust her dose, she found a dose that worked for her.
She still goes for routine tests to monitor her blood counts and vitals and check for signs of cancer in her blood, and she regularly checks in with her doctor about any side effects she experiences.
Dana urges anyone facing advanced ovarian cancer to talk with their doctor about all the possible benefits and risks and whether a maintenance therapy might be an option for them — the way ZEJULA is for her — and to read more at zejula.com.
Don’t discount DNA
Although Dana’s family doesn’t have a history of ovarian cancer, the genetic mutations associated with ovarian and other gynecologic cancers can run in families.9 Of particular note are mutations in the genes BRCA1 and BRCA2 — short for BReast CAncer genes 1 and 2 — that disrupt the body’s ability to repair DNA damage.10
There are no routine screening tests recommended for ovarian cancer for women who do not have symptoms and are not at high risk of developing the disease.11 However, genetic tests for BRCA mutations can help assess ovarian cancer risk for those with known family history and can help guide treatment for those who have already received a diagnosis.12
There are now also genomic tests — analyzing a person’s entire genetic makeup, rather than searching for a handful of individual genes — that can detect another marker of ovarian cancer called HRD, which stands for homologous recombination deficiency.13
With HRD, the body is specifically unable to fix breaks in the DNA strand, which may change how cancer cells grow and respond to certain treatments.14 About 50% of women with advanced ovarian cancer have tumors that test positive for HRD,14 and while it can coincide with BRCA mutations, it doesn’t always, which is why it’s important to test for both.15 HRD is more common among Black patients, compared to whites.16 Yet, Black patients are less likely to be referred for genetic testing17 and also less likely to receive maintenance therapy.18
ZEJULA can be used as a maintenance treatment for women with and without a positive test for BRCA or HRD.19
Being a health advocate
As with most forms of cancer, early diagnosis and treatment of ovarian cancer are key factors that determine outcomes.
Yet, the signs and symptoms of ovarian cancer — bloating, abdominal pain or pressure, trouble eating, feeling full quickly and urinary urgency or frequency — aren’t noticeable early in the course of disease and can easily be mistaken for other conditions.20
Dana had no reason to suspect anything was wrong when she went for that fateful physical over two decades ago. She made that appointment because she’s proactive and vigilant about her health, and today, she advocates for others to do the same, by knowing family history, being vocal with their doctors and never ignoring what may seem like small health concerns.
That’s an especially important message in the Black community, since deeply ingrained barriers to access have resulted in Black Americans receiving a lower level of preventative health care than white Americans,21 which serves to perpetuate inequities in cancer outcomes.22
Dana makes a point of telling her story as often as she can and offering a listening ear to others who may be facing similar health challenges, as a way to lift up her community.
“Knowing that I’m doing everything I can to actively support my own care, along with being able to encourage my fellow sisters in the fight, provides me that extra nudge to keep pressing,” says Dana.
ZEJULA is a prescription medicine used for the:
- maintenance treatment of adults with advanced ovarian cancer, fallopian tube cancer, or primary peritoneal cancer. ZEJULA is used after the cancer has responded (complete or partial response) to treatment with platinum-based chemotherapy
- maintenance treatment of adults with ovarian cancer, fallopian tube cancer, or primary peritoneal cancer that comes back. ZEJULA is used after the cancer has responded (complete or partial response) to treatment with platinum-based chemotherapy
- treatment of adults with advanced ovarian cancer, fallopian tube cancer, or primary peritoneal cancer who have been treated with 3 or more prior types of chemotherapy and who have tumors with:
- a certain BRCA gene mutation, or
- gene mutation problems and who have progressed more than 6 months after their last treatment with platinum-based chemotherapy.
- Your healthcare provider will perform a test to make sure that ZEJULA is right for you
It is not known if ZEJULA is safe and effective in children.
Important Safety Information
ZEJULA may cause serious side effects, including:
Bone marrow problems called Myelodysplastic Syndrome (MDS) or a type of blood cancer called Acute Myeloid Leukemia (AML). Some people who have ovarian cancer and who have received previous treatment with chemotherapy or certain other medicines for their cancer have developed MDS or AML during treatment with ZEJULA. MDS or AML may lead to death.
Symptoms of low blood cell counts (low red blood cells, low white blood cells, and low platelets) are common during treatment with ZEJULA. They can be a sign of serious bone marrow problems, including MDS or AML. These symptoms may include the following:
- Feeling tired
- Weight loss
- Frequent infections
- Shortness of breath
- Blood in urine or stool
- Bruising or bleeding more easily
Your doctor will do blood tests to check your blood cell counts before treatment with ZEJULA. You will be tested weekly for the first month of treatment with ZEJULA, monthly for the next 11 months of treatment, and from time to time afterward.
High blood pressure is common during treatment with ZEJULA, and it can become serious. Your doctor will check your blood pressure and heart rate at least weekly for the first two months, then monthly for the first year, and as needed thereafter during your treatment with ZEJULA.
Posterior reversible encephalopathy syndrome (PRES) is a condition that affects the brain and may happen during treatment with ZEJULA. If you have headache, vision changes, confusion, or seizure, with or without high blood pressure, please contact your doctor.
Before starting to take ZEJULA, tell your doctor about all of your medical conditions, including if you:
- Have heart problems
- Have liver problems
- Have high blood pressure
- Are allergic to FD&C Yellow No. 5 (tartrazine) or aspirin. ZEJULA capsules contain tartrazine, which may cause allergic-type reactions (including bronchial asthma) in certain people, especially people who also have an allergy to aspirin
- Are pregnant or plan to become pregnant. ZEJULA may harm an unborn baby and may cause loss of pregnancy (miscarriage)
- If you are able to become pregnant, you should use effective birth control (contraception) during treatment with ZEJULA and for 6 months after taking the last dose of ZEJULA
- If you are able to become pregnant, your doctor may perform a pregnancy test before you start treatment with ZEJULA
- You should tell your doctor right away if you become pregnant
- Are breastfeeding or plan to breastfeed
- ZEJULA may harm your baby. You should not breastfeed your baby during treatment with ZEJULA and for 1 month after taking the last dose of ZEJULA
Tell your doctor about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.
The most common side effects of ZEJULA include the following:
If you have certain side effects, then your doctor may change your dose of ZEJULA, temporarily stop, or permanently stop treatment with ZEJULA.
These are not all the possible side effects of ZEJULA. For more information, ask your doctor or pharmacist. Call your doctor for medical advice about side effects. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.
Please see Prescribing Information.
Trademarks are owned by or licensed to the GSK group of companies.
©2022 GSK or licensor.
NRPCOCO220001 June 2022
Produced in USA.
- Sakhuja S, Yun H, Pisu M, Akinyemiju T. Availability of healthcare resources and epithelial ovarian cancer stage of diagnosis and mortality among Blacks and Whites. J Ovarian Res. 2017;10(1):57. Published 2017 Aug 22. doi:10.1186/s13048-017-0352-1
- Collins Y, Holcomb K, Chapman-Davis E, Khabele D, Farley JH. Gynecologic cancer disparities: a report from the health disparities taskforce of the Society of Gynecologic Oncology. Gynecol Oncol. 2014;133:353–361. doi: 10.1016/j.ygyno.2013.12.039.
- Srivastava SK, Ahmad A, Miree O, et al. Racial health disparities in ovarian cancer: not just black and white. J Ovarian Res. 2017;10(1):58. Published 2017 Sep 21. doi:10.1186/s13048-017-0355-y
- American Cancer Society. Key Statistics for Ovarian Cancer. https://www.cancer.org/cancer/ovarian-cancer/about/key-statistics.html. Accessed: April 115, 2022.
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- Lorusso D, Mancini M, Di Rocco R, Fontanelli R, Raspagliesi F. The role of secondary surgery in recurrent ovarian cancer. Int J Surg Oncol. 2012;2012:613980. doi:10.1155/2012/613980.
- Khalique S, Hook JM, Ledermann JA. Maintenance therapy in ovarian cancer. Curr Opin Oncol. 2014;26(5):521-528
- Lin Q, Liu W, Xu S, Shang H, Li J, Guo Y, Tong J. PARP inhibitors as maintenance therapy in newly diagnosed advanced ovarian cancer: a meta-analysis. BJOG 2020; https://doi.org/10.1111/1471-0528.16411
- National Cancer Institute. BRCA Mutations: Cancer Risk and Genetic Testing. https://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet. Last Updated November 19, 2020. Accessed February 2022
- Neff, R. T., Senter, L., & Salani, R. (2017). BRCA mutation in ovarian cancer: testing, implications and treatment considerations. Therapeutic advances in medical oncology, 9(8), 519–531. https://doi.org/10.1177/1758834017714993
- American Cancer Society. Tests For Ovarian Cancer. https://www.cancer.org/cancer/ovarian-cancer/detection-diagnosis-staging/howdiagnosed.html. Last Updated May 10, 2020. Accessed May 2022
- National Cancer Institute. Genetic Testing for Inherited Cancer Susceptibility Syndromes. https://www.cancer.gov/about-cancer/causes-prevention/genetics/genetictesting-fact-sheet. Accessed May 2022
- WebMD. What Is Genomic Testing in Cancer? https://www.webmd.com/cancer/cancergenomes-21/what-is-genomic-testing. Accessed May 2022
- Target Ovarian Cancer. (2021). Homologous recombination deficiency. https://targetovariancancer.org.uk/about-ovarian-cancer/hereditary-ovariancancer/homologous-recombination-deficiency. Accessed May 2022
- Haunschild CE, Tewari KS. The current landscape of molecular profiling in the treatment of epithelial ovarian cancer. Gynecol Oncol. 2021;160(1):333-345. doi:10.1016/j.ygyno.2020.09.04
- Sinha S, Mitchell KA, Zingone A, et al. Higher prevalence of homologous recombination deficiency in tumors from African Americans versus European Americans. Nat Cancer. 2020;1(1):112-121. doi:10.1038/s43018-019-0009-
- Chapman-Davis E, Zhou ZN, Fields JC, et al. Racial and Ethnic Disparities in Genetic Testing at a Hereditary Breast and Ovarian Cancer Center. J Gen Intern Med. 2021;36(1):35-42. doi:10.1007/s11606-020-06064-
- Dawood S. Use of PARPi among patients with advanced ovarian cancer: Results from a real-world database. Poster presented at: ESMO Congress; Sept 16-21, 2021; Paris, France
- Foo T, George A, Banerjee S. PARP inhibitors in ovarian cancer: An overview of the practice-changing trials. Genes Chromosomes Cancer. 2021;60(5):385-397. doi:10.1002/gcc.2293
- American Cancer Society. Signs and Symptoms of Ovarian Cancer. https://www.cancer.org/cancer/ovarian-cancer/detection-diagnosis-staging/signs-and-symptoms.html. Accessed: April 2022
- Fiscella K, Sanders MR. Racial and Ethnic Disparities in the Quality of Health Care. Annu Rev Public Health. 2016;37:375-394. doi:10.1146/annurev-publhealth-032315-02143
- Islami F, Guerra CE, Minihan A, et al. American Cancer Society's report on the status of cancer disparities in the United States, 2021. CA Cancer J Clin. 2022;72(2):112-143. doi:10.3322/caac.21703