For Participants

We Need Your Help!

Your participation, the stories you tell us, and the information you provide to us are so important. We hope that you will take part in the interviews for our study. With your help, we may be able to answer some important questions and better understand how to improve the lives of people with endometrial cancer in North Carolina.

We hope that you will say “yes” to this study!

Please contact us with any questions about this study at 866-927-6920 or through our online contact form.

This is not a clinical trial. We will not ask you to take any medicine, and participating will not change your cancer treatment in any way. Your decision about participating will not change your relationship with your doctor, the treatment they recommend, or the medical care you receive.

Participant Newsletters

Volume 1

Volume 2

Volume 3

Volume 4

Frequently Asked Questions

Why are we contacting you?

By law, all newly diagnosed cancer cases are reported to the North Carolina Central Cancer Registry. The Registry can provide qualified researchers with some of this information as long as they let the person’s doctor know about the study first. We checked with your doctor before contacting you. You may choose not to participate.

Why is my information important?

To learn more about a disease it is important to study people who already have it. Although this research may not help you directly, your information may help to learn more about survivorship after endometrial cancer and why some people have different outcomes and experiences. It is our hope that this information will help reduce endometrial cancer burdens and lead to improved outcomes and survival in future generations.

What does it mean to participate?

Participating in the study is easy! Soon, you’ll be contacted by one of our study staff to answer any questions you may have about the study. If you decide to participate, we can either conduct an interview during this call or schedule a call-back time. You may also complete the survey by mail or online. Telephone interviews will be scheduled on a day and time that works best for you (weekday, evening, or weekend). The survey includes questions about your family history, medical history, lifestyle, access to care, and cancer treatments. You do not need to answer all of the questions, but we hope that you will. The survey questions may take 45 minutes.

We will also ask you if we can mail some consent forms for you to sign and return, so that we may obtain your medical records and a stored tissue sample from your diagnosis/treatment of endometrial cancer. This should only take 10-15 minutes. You will also be asked to provide a saliva sample using a self-collection kit that you can complete through the mail.

With your permission, study staff will follow up with you by telephone or mail every year or so for approximately 5 years to ask about treatment status and quality of life measures. You do not have to take part in the follow-ups. If you do, each follow-up contact will take about 15-25 minutes.

Will I receive compensation?

You will be paid $40 if you complete the survey. You will be paid an additional $30 if you provide consents for us to obtain copies of your medical records and stored tumor tissue samples, and $40 when we receive a completed saliva self-collection kit. Additional payments will be made for follow-up contacts and if we need to obtain additional medical records or tumor tissue, you will receive $15 for returning consents for updated medical records and $15 for consent to obtain additional tumor tissue samples.

Why am I important?

If you were asked to participate, it means that you were selected to represent adults in North Carolina of your race and age group. We use a random selection process to make sure that our study participants accurately represent ALL adults with endometrial cancer in their race and age group. Therefore, once you have been asked to participate, no one can fill your place without affecting the quality of the study.

Why is the study “oversampling” Black women?

“Oversampling” refers to enrolling participants from a group of people at a rate higher than that group’s share of the population. This is an important technique. It enables CECS researchers to gain a fuller sense of the experiences of Black women with endometrial cancer and to see differences within Black women and differences compared to non-Black women that would have otherwise gone unnoticed. CECS’s success will come from its participants, who graciously agree to share their lives with us.

UNC Health created a video about the importance to science, medicine, and, especially, Black communities that Black women participate in research.

What is the difference between this study and a clinical trial?

Unlike a clinical trial, we will NOT ask you to take drugs or medicine of any kind and we will NOT treat your endometrial cancer. Your decision about participating will not change your relationship with your doctors, the treatment they recommend, or the medical care you receive.

Advocacy Partners

ECANA is a multi-stakeholder group of patients, researchers, clinicians and community leaders. For this project, ECANA ambassadors (patient advocates) provide patient insight on study design, recruitment approach, participant retention, and data analysis.

Endometrial Cancer Resources

You are not meant to endure cancer alone. If you are interested in becoming connected with other people affected by endometrial cancer or getting emotional support and financial assistance, check out these cancer support groups for people with endometrial cancer:

1 of Us is a Raleigh, NC-based support group assisting breast and gynecological cancer patients in North Carolina who are in financial crisis. The group is partnered with UNC Hospitals in Chapel Hill, NC and regularly hosts local annual gathering events for women with cancer. For more information, please visit 1ofus.org

The Hope Chest For Women, Inc. supports women living in 22 counties of Western NC and diagnosed or at risk for breast and gynecologic cancer. The group provides financial assistance to women who are battling breast or gynecologic cancer and residing in Western NC. For more information, please visit hopechestforwomen.org

ECANA advocates for any African-American woman affected by endometrial cancer and hosts national annual conferences for researchers and patient ambassadors. The group also provides educational materials for endometrial cancer patients. For more information, please visit ecanawomen.org

Young Moms Against Cancer – Support Group

The group is open to any woman, diagnosed with any type of cancer, at any age. To request to join, visit the Facebook page.

Comprehensive Cancer Support Program

The UNC Lineberger Comprehensive Cancer Support Program helps patients during cancer treatment, recovery, and survivorship. UNC Lineberger is the only public National Cancer Institute-designated comprehensive cancer center in North Carolina.

The Patient Family Resource Center connects patients to support, education, and related resources. It also offers services such as financial aid referrals, a boutique for wigs and head coverings, and relaxation rooms. The PFRC is located on the ground floor of the N.C. Cancer Hospital in Chapel Hill, NC.

Additional cancer support services can be found at healthcare facilities throughout North Carolina:

Atrium Health: Cancer Support & Survivorship Programs

Cape Fear Valley Health: Cancer Center Support Services

Cone Health: Cancer Support & Wellness Services

Duke Health: Cancer Support Services

Mission Health: Support Services

Novant Health: Support Center

UNC Health: Comprehensive Cancer Support Program ; Patient Family Resource Center

UNC REX Healthcare: Support Services

Vidant Health: Programs & Support

Wake Forest Baptist Health: Cancer Patient Support Program ; Psychosocial Oncology Program ; Cancer Survivorship Clinic

Mental Health Resources

• Hope4NC Helpline: Call or text ‘hope’ to 1-855-587-3463 The Hope4NC Helpline is a 24/7, free service that connects North Carolinians to additional mental health and resilience supports. The aim is to help people cope and build resilience during times of crisis. Hope4NC includes a Crisis Counseling Program tailored for COVID-19. If you do not have health insurance, Hope4NC can may still be able to connect you with behavioral, mental health, and substance abuse services.  Llámanos al 1-855-587-3463 las 24 horas del día, los 7 días de la semana para obtener apoyo emocional gratuito y confidencial, remisiones de asesoramiento y recursos comunitarios.
• Disaster Distress Helpline, 1-800-985-5990 The Helpline is a 24-hour-a-day, seven-day-a-week and free resource that responds to people who need crisis counseling and support in dealing with the traumatic effects of a natural or human-caused disaster. The Helpline is sponsored by the Substance Abuse and Mental Health Services Administration (SAMHSA) of the federal Department of Health and Human Services. You can also reach out by texting “TalkWithUs” to 66746. If you are deaf or hard of hearing, use your preferred relay service to call the Helpline at 1-800-985-5990 or call TTY 1-800-846-8517. Si Ud. se prefiere español (or conoce a alguien quien lo prefiere), llame 1-800-846-8517, y oprime numero 2. También Ud. puede enviar un mensaje de texto “Hablanos” a 66746. 
• Patient Family Resource Center: 984-974-8100 There are unique challenges for those battling cancer. If you are a current patient with UNC Health, the Patient Family Resource Center at the N.C. Cancer Hospital in Chapel Hill, NC, can connect you with mental health, counseling, or other resources that are knowledgeable also about how to best serve the people who had or still are fighting cancer through their Cancer Navigation Support Calls program.
• COVID-19 and Cancer For more help understanding what COVID-19 is and how it may affect you as a breast cancer survivor or fighter, see the helpful guides posted by the American Cancer Society and the non-profit Foundation for Women’s Cancer.
• National Suicide Prevention Lifeline: Dial 988 Counselors are available by phone, text or chat 24/7 at centers across the United States to help if you or someone you know is having thoughts about suicide or is in emotional distress. It is always free and confidential to speak with someone. If you are more comfortable texting, text Connect or MHFA to 741741, or you can chat with someone by visiting https://suicidepreventionlifeline.org/chat/. If you are deaf or hard of hearing, use your preferred relay service, or dial 711, then 1-800-273-8255. Llame 988 para hablar con algien en español.
• Veterans Crisis Line: Dial 988, then press #1 The National Suicide Prevention has counselors trained specifically to address the issues faced by military veterans. To reach someone by text, text Connect to 838255.
• HopeLine NC: Call or text 919-231-4525 | 877-235-4525 HopeLine is a nationally accredited crisis intervention and suicide prevention agency.  Our mission is to support people and save lives during times of crisis through caring, confidential conversations. We do this by providing the community with a free and confidential crisis and suicide prevention helpline that offers crisis intervention, supportive and non-judgmental active listening, gentle and understanding discussion of crisis resolution, and referrals to appropriate community resources. The Text Line is open Monday-Friday 3pm – 9pm  https://www.hopeline-nc.org/
• Trans Lifeline: 1-877-565-8860 Trans Lifeline provides peer support for transgender people by members of the trans community. They provide resources on mental health through practicalities of trans living. Hours are currently 5pm – 1am ET every day of the week. Oprima 2 para hablar con unx operador en español.
• LGBT National Hotline: 1-888-843-4564 A confidential safe space where callers of any age can speak about sexual orientation or gender identity/expression issues. This includes coming out issues, relationship concerns, bullying, workplace issues, HIV/AIDS anxiety, safer sex information, suicide, and much more.
• Mobile Crisis Units Call the Hope4NC helpline (1-855-587-3663), or call 911 and ask for a “CIT officer” to respond.
• Finding a Local Therapist To find someone to visit in person, follow this link, or this one, or this one. To find online therapists, go here

Financial and Well-being Resources:

• Partnership for Prescription Assistance https://medicineassistancetool.org   Helps qualifying patients without prescription drug coverage get the medicines they need for free or nearly free.
• HealthWell https://triagecancer.org/healthwell-foundation-copay-assistance-for-cancer-patients Provides up to $2,000 in copayment assistance for behavioral health treatments related to a cancer diagnosis. Funds help cover out-of-pocket treatment-related costs for prescription drugs, counseling services, psychotherapy, and transportation.
• RX Assist https://www.rxassist.org/ Offers education about ways to use pharmaceutical company programs and other resources to reduce medication costs.
• Southeastern Cancer Care (SCC)https://www.southeasterncancercare.org/ Provides financial assistance for basic needs, such as food, utilities, gas, and cancer-related prescription drugs, during cancer treatments. Assistance is available to those living east of I-95 or in a county within the I-95 boundaries.
• KidsCAN! https://holtbrothersfoundation.org/ Provides education, emotional support, peer empathy and inspiration during monthly group meetings for children ages 6-16 with a parent with cancer
• Kesemhttps://www.kesem.org/ (253)736-3821 Supports children through and beyond their parent’s cancer. Provides children impacted by a parent’s cancer a continuum of touch points throughout the year. The largest program, Camp Kesem, is a week-long summer camp provided free of charge for children ages 6 through 18.
• Lasagna Lovehttps://lasagnalove.org/  provides volunteer-prepared home delivered meals to families in need throughout the country. Families/individuals may request one meal each month for the household.
• Nutrition for Longevity https://nutritionforlongevity.com/ Provides medically tailored home delivered meals to those recovering from illness. This program accepts Medicaid or Medicare. 833-688-7445
• The Helene Foundationhttps://www.helenefoundation.org/  919-280-7800  Provides assistance to North Carolina families with mothers actively undergoing cancer treatments through practical support (delivered meals, housecleaning, child care, family support and assistance with arranging transportation to medical appointments). To qualify you must reside in North Carolina, have one child under the age of 18 living in the home, and be in active treatment for any form of cancer from a Triangle area cancer treatment facility.
• American Cancer Society Road to Recovery https://www.cancer.org/support-programs-and-services/road-to-recovery.html (800)227-2345 Program provides free ground transportation to and from cancer-related medical appointments for people with cancer who do not have a ride or are unable to drive themselves.
• Cleaning for a Reason https://cleaningforareason.org/ A trusted network of residential cleaners, cleaning industry volunteers, and community volunteers provide free home cleaning to patients battling cancer.
• Bucket and Bows https://bucketsandbows.com/charities/cancer-cleaning Nonprofit offering free professional housecleaning services to improve the lives of individuals undergoing treatment for cancer.
• Cancer + Careers https://www.cancerandcareers.org/  Offers legal and insurance information and lists of resources to deal with job related issues, including disability
• Imerman Angels https://imermanangels.org/   Connects cancer fighters, survivors, previvors and caregivers to Mentor Angels, cancer confidantes with similar stories and experiences. Provides free, personalized one-on-one cancer support for cancer fighters, survivors, previvors.

*If you know of additional cancer support services at healthcare facilities in North Carolina that you’d like listed here, please let us know using our online contact form.