Nefa-Tari Moore is a three-time cancer survivor, experienced nurse and caregiver, and an advocate for women facing cancer and for civil rights. She currently works with SHARE, a nonprofit that provides support to underserved communities facing cancer as an Ambassador and endometrial cancer Associate. Nefa-Tari recently spoke with Black Health Matters about her experiences as a survivor of endometrial and ovarian cancer, and how she uses her story as a vessel to inspire and support others.
Black Health Matters: Who is Nefa-Tari Moore?
NM: Nefa-Tari is a strong, Black female who is strong in her faith. I love the person that I am, and I love the skin that I am in. I’m a professional caregiver and experienced nurse of 14 years. And I am also a three-time cancer survivor, twice endometrial and once ovarian. I’m an advocate for women facing cancer and for civil rights.
BHM: Can you tell me more about your experience as a survivor of endometrial and ovarian cancer?
NM: Yes, I’m a two-time survivor of endometrial cancer. I was first diagnosed with endometrial cancer in 2013 at the age of 33, and I had just gotten married five months prior to receiving the diagnosis. So, I wanted to preserve my fertility because the plan was for [us] to have a family. Nine months after completing treatment I had a recurrence of endometrial cancer in 2015 and at the age of 35 I had a hysterectomy.
BHM: What symptoms did you have, and what are examples of some of the symptoms women should look out for?
NM: Well, the first time that I was diagnosed I had heavy bleeding with severe lower back pain. Those would be some of the symptoms to watch out for—any type of abnormal bleeding, back pain, or bleeding in-between periods. If you are someone who is perimenopausal, a younger woman or someone who is a woman who is menopausal [you should] watch out for any [abnormal] vaginal bleeding. But these are not all of the possible symptoms of endometrial cancer, and could also be indicative of other conditions. It is important to discuss any symptoms of concern with your healthcare provider.
BHM: Was there a difference in symptoms from the first time you were diagnosed and the reoccurrence?
NM: The second time I didn’t have any symptoms. After my first diagnosis, as follow up care, I had to go in for a biopsy with my oncologist every three months, and the reoccurrence was found after having a biopsy. It was nine months after completing the initial treatment.
BHM: Annual wellness exams are generally recommended as a best practice for overall wellness. Can you discuss the role regular checkups have played in your EC journey?
NM: I think regular checkups were a big part of my survival story. And also advocating for myself and keeping on top of all of my appointments and finding out as much information as I could about the diagnosis [helped] as well, because it helped me to be more proactive about my care and what was going on with my health.
BHM: When you were first diagnosed, did your healthcare provider mention anything that could have made you more susceptible to getting endometrial and ovarian cancer?
NM: For me, it’s genetic. I have a genetic mutation that is hereditary called Lynch syndrome which is associated with a higher risk of endometrial cancer, colon cancer, ovarian cancer and a host of other cancers. The first two times that I was diagnosed with endometrial cancer, I had never done genetic testing, it was never introduced to me. And at that time, I had a different oncologist than I do now. The oncologist that I had when I was diagnosed with ovarian cancer, she had me do everything with the genetic testing and that was how I found out that I had this genetic mutation. Lynch syndrome is not the only risk factor that may increase the risk of endometrial cancer.
BHM: So, women should definitely ask their healthcare providers about the genetic testing.
NM: Yes, women should talk to their doctors about whether genetic testing would be appropriate for them.
BHM: How did you get started working with SHARE?
NM: Well, it goes back to 2018 when I was diagnosed with ovarian cancer. Just to go back a little bit, in 2015, when I had the reoccurrence of endometrial cancer, I had to get surgery. I had a hysterectomy, but they only removed my uterus because of [my] age and they didn’t want me to go into an early onset of menopause or heart disease.
I was left with the fallopian tubes and both ovaries and in 2018 I developed ovarian cancer. I started searching for a support group and I did some web research and I found SHARE’s ovarian [cancer] support group and I called the helpline and spoke to the health line coordinator and [then] I started attending the ovarian cancer support group.
From there I got involved in outreach to help get information into Black communities it’s called Afro-SHARE, it’s an outreach program at SHARE and that’s how I got involved. And then, I think the next steps after that was just telling my story and then SHARE decided to come up with endometrial cancer support. And I just wanted to be a part of that particular support of service, so I stayed on that road.
BHM: In addition to joining SHARE and having that support system to lean on, what were some other things that helped you through your EC journey?
NM: Well for me I wanted to survive just to be here longer. As a healthcare professional and caregiver, I want to be able to have an impact on others. And also, my faith kept me very much in line with striving to keep up with my health. [It was also] the encouragement from the women in the ovarian cancer support group and being my own advocate. And they gave me a lot of hope and encouragement.
BHM: What inspires you to help others in addition to your story?
NM: My faith. I’m Islamic. I’m a Muslim and so my faith carries me […] to be an advocate for other women and other people in general. And also, because I know what it’s like to go through such a diagnosis. And I want to be here to get the word out about this type of cancer and to support, empower and encourage other women. [I want] to continue to uplift women who are going through this, and even other people, just to get that information out there to people [who] are facing the diagnosis of endometrial cancer.
BHM: What’s next for you?
NM: What’s next for me is to continue doing the work that I am doing now with advocating for other women. I would like to, for myself and for my community raise awareness of some of the common signs of EC so that women with the condition can be diagnosed earlier. The average age for endometrial cancer is 1. Now, studies are showing more and more younger women being diagnosed. Women in their late 20s and early 30s. So, I would like to dive more into that and the impact that it has on younger women being diagnosed and the effects that it takes on having a family and [the] other physical aspects. So, I would like to go in that direction to support those women.
BHM: As a nurse, caregiver, and now survivor, would you consider it your purpose to help women learn more about EC?
NM: Absolutely. Absolutely, because I’ve spent 14 years as a nurse caring for others. I feel like it’s my calling. When I was diagnosed, I felt like, “Why did this happen to me?” And then, after a while, now, I believe, that this was God’s way of using me as a vessel to be able to get out there and support [others] and shed light on my purpose.
BHM: What advice can you give women in regard to working with their doctors to take care of their health or how to cope with a diagnosis?
NM: For me personally, I stayed close and in alignment with my faith. I stayed on top of all of my doctor appointments, and I learned as much as I could about the diagnosis. I asked my doctor questions about treatment options and what the possible outcomes for me were. Also learn about your heredity. Talk to your family and learn about your family’s history with cancer and any type of hereditary genes or mutations that may associated with cancer. Focus on taking care of yourself more. This could be through meditation, diet or exercise as recommended by your doctor. Because the care is inward and outward. [For me] I keep up with prayer. I try to eat as well as possible, [and] I keep my immune system built-up. So those are some of my favorite things, staying in prayer, meditation, and listening to music. These are some of the things that have helped me a lot.
Nefa-Tari is part of the Spot Her campaign – an initiative to help end the silence around endometrial cancer, a type of uterine cancer, and inspire women to listen, advocate and put their health and the health of other women first. Spot Her is a collaboration between SHARE Cancer Support (SHARE), Facing Our Risk of Cancer Empowered (FORCE),Black Health Matters and Eisai Inc. Want more info on endometrial cancer and the types of symptoms to look for? Learn more by exploring SpotHerforEC.com.