Learning About Uterine Fibroids
- “12 Years a Slave” actress Lupita Nyong’o, 42, is working to raise awareness for uterine fibroids while insisting “silence serves no one” after having 30 removed and learning how many women are living with this condition.
- “Uterine fibroids are benign (non-cancerous) tumors that are extremely common, with up to 80% of women having a fibroid in their lifetime,” Dr. Kelly N. Wright previously told SurvivorNet. “Many fibroids are small and cause no symptoms, and therefore can be monitored over time.”
- It’s important to note that while fibroids themselves aren’t cancerous, there is a rare type of cancer that can mimic the look of these tumors.
- Recommendations to improve health outcomes for Black women include improved access to cancer screenings sooner, addressing racial bias in medicine, and building trust within Black communities.
- SurvivorNet experts recommend emphasizing earlier, more frequent screenings, increased access to clinical trials, and providing more access to oncologists to help Close the Gap in care.
The Kenyan-Mexican, who graduated from Yale School of Drama, captioned an July 15 Instagram post, “I’m speaking up about uterine fibroids. This is my story. This Fibroid Awareness Month and beyond, I hope my experience will resonate with anyone else who has ever felt dismissed, confused or alone.
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Offering insight into her personal experience with this condition, she wrote in overlay text on a carousel of photos, shared on her post, “In March 2014, I won an Academy Award. That same year, I discovered that I had uterine fibroids. 30 fibroids. I had surgery to remove them.
“I asked my doctor if I could do anything to prevent them from recurring. She said, ‘You can’t. It’s only a matter of time until they grow again.'”
After explaining how uterine fibroids are “non-cancerous growths that develop in or around the uterus” that range in size and can cause various symptoms like heavy menstrual bleeding and pelvic pain, she pointed out how common these growths are, “yet we speak so little of them.”
She continued, “When we reach puberty, we’re taught periods mean pain, and that pain is simply part of being a woman. We’re struggling alone with something that affects us most.”
Expert Resources On Coping With a Diagnosis
Nyong’o concluded, “I envision a future of early education for teenagers, better screening protocols, robust prevention research, and less invasive treatments for uterine fibroids.
“Let’s study women’s health and prioritize this chronic condition that has never been comprehensively examined. … We deserve better. It’s time to demand it. Silence serves no one!”
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What Are Uterine Fibroids?
Uterine fibroids are very common, but not many people actually know about them. So, to help clarify, SurvivorNet previously spoke with Dr. Kelly N. Wright a specialist in the Minimally Invasive Gynecologic Surgery Center at Cedars-Sinai.
“Uterine fibroids are benign (non-cancerous) tumors that are extremely common, with up to 80% of women having a fibroid in their lifetime,” Dr. Wright told SurvivorNet. “Many fibroids are small and cause no symptoms, and therefore can be monitored over time.
“We expect fibroids to shrink by about 30% at the time of menopause, and after menopause, they shouldn’t grow any further or cause new symptoms.”
Sometime, however, they do causes symptoms that can interfere with a woman’s quality of life.
“When fibroids do cause symptoms, it can be either with a women’s period (heavier or irregular bleeding or both), or by causing ‘bulk’ symptoms, which are symptoms caused by the compression of the fibroid onto other organs,” Dr. Wright explained. “Bulk symptoms can include a protrusion in the belly, urinating frequently, or sometimes pelvic pain.
“If a fibroid is causing these symptoms, then it should be evaluated by a physician, and a treatment plan should be created. Fibroids that interfere with one’s quality of life should not be ignored,” she continued.
It’s important to note that while fibroids themselves aren’t cancerous, there is a rare type of cancer that can mimic the look of these tumors.
“Though fibroids are extremely common, some women are at risk for having a much less common type of cancer that can look like fibroids called leiomyosarcoma,” Dr. Wright said. “Women who have new fibroid tumors grow after menopause, take tamoxifen (a medication for breast cancer), or have a history of kidney cancer may be at a higher risk for leiomyosarcoma.
“Any concern for cancer in a fibroid should be fully evaluated and may require a hysterectomy for treatment.”
Additionally, uterine fibroids do not increase the risk for uterine cancer, and they do not have a known cause.
Closing the Gap
SurvivorNet’s Close the Gap initiative is committed to drawing added awareness of these disparities and providing solutions to improve the survival rates of all people diagnosed with cancer, regardless of their background. Our partners in this initiative include NYU Langone and The Perlmutter Cancer Center. We are committed to the fight for equality.
SurvivorNet experts recommend emphasizing earlier, more frequent screenings. Other focus areas to improve access to care for racially diverse groups include:
- Reviewing a patient’s family medical history
- Address income inequality. Lack of access to healthcare due to no or limited health insurance is a barrier for some low-income patients.
- Increased access to clinical trials and oncologists
- Greater overall access to healthcare
- Improve the number of oncologists from diverse backgrounds
Overcoming Cultural Barriers to Improve Healthcare for Black Women
Clinical trials and medical studies are crucial to understanding how medicine works. However, most people participating in these studies and clinical trials are white.
The American Society of Clinical Oncology (ASCO) says Black Americans are “under-represented in cancer clinical trials,” which can limit our understanding of therapeutic response to Black populations.
The Federal Drug Administration (FDA) said in a 2020 report that studied demographic data on clinical trials for drug participation 75% of participants were white, 8% were Black African Americans, 6% were Asian, and 11% were Hispanic.
WATCH: Black Americans and cancer screenings.
The federal agency noted that patient recruitment and retention were critical to understanding the effectiveness of clinical trial results.
“As it is, patient recruitment in oncology clinical trials is quite low. For Black patients, it is about 4%,” Dr. Kathie-Ann Joseph, a breast surgeon and vice chair for diversity and health equity in the Department of Surgery at NYU Langone Health Perlmutter Cancer Center previously told SurvivorNet, regarding the need for more diverse participation in this critical area of medicine.
Dr. Joseph highlighted some key areas the healthcare community must address to improve Black and other racial groups’ participation in medical studies and clinical trials.
“Trust has to be built not only between the doctor and the patient but also between the hospital and the community.”
“Moreover, there should be efforts to recruit minority patients by having diverse staff and ensuring that the language used in the recruitment literature is at the appropriate reading level and translated into the languages common in the community,” Dr. Joseph explained.
Building Trust
“It all comes down to trust and familiarity,” psychologist and founder of InnoPsych Dr. Charmain Jackman tells SurvivorNet.
“Our shared heritage engenders trust and serves as a first step to Black people trusting the medical field. However, there is still so much inherent bias in the way we are trained that if the Black professional is not doing the work of decolonizing (i.e., removing bias) their practice, my guess is that trust will be hard to keep, and the Black patient may not return for care,” Dr. Jackman adds.
Efforts to get more Black Americans to heed medical information, even from legitimate sources, become easier once past racism in medicine is fully atoned.
WATCH: Merck’s Josette Gbemudu explains how to improve outcomes for Black cancer patients.
Contributing: SurvivorNet Staff
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