infertility

Cultural Perspectives: Understanding the Impact of Cervical Cancer on Black Women

Cervical cancer is a global health concern that affects women of all races and ethnicities. However, when we look into the cultural nuances surrounding healthcare, it becomes evident that certain communities face unique challenges. 

Black women, despite advancements in healthcare, continue to face disproportionate rates of cervical cancer. The reasons behind these disparities are complex and rooted in a combination of socioeconomic factors, healthcare access, and cultural considerations. To truly understand the impact, we need to listen to the stories of Black women who have faced the challenges of cervical cancer head-on.

Impactful Stories of Black Cervical Cancer Survivors

Shondria’s Journey: Navigating Societal Norms: “Giving up my dream of having children with the man I loved and giving Romeo a sibling was one of the hardest things to deal with. After Matt and I got married, people automatically asked when were we going to have a baby. My son was from a previous relationship and Matt didn’t have any kids and I was hoping that later down the line if we were still together we would be able to have a child or 2. I even told my doctor that I didn’t want to give up my reproductive rights but I still chose the supposed better option. On March 27, 2008, I had my radical hysterectomy where they removed my cervix, the top part of my vagina, my uterus, my Fallopian tubes, and about 20 lymph nodes. I requested a copy of my surgery report that showed that the cancer was about 1 cm. Everything else was negative for cancer. Raising awareness is so important and I don’t know how many times at work I hear my female coworkers say they don’t think they need a Pap or they’re too afraid to find out if it’s bad news. Also, knowing your family’s medical history is so important! My mom never told me that other women in our family have had cervical cancer, ovarian cancer, and vulva cancer, which is extremely important to know. Knowledge is power!”

Urika’s Story In Overcoming Systemic Barriers: “Before starting my chemo treatments, my doctor at the time was having issues with my insurance to get my treatment started. She was beginning to get frustrated with my health insurance company because she wasn’t able to begin my treatments without approval. I received a call one day from my doctor saying, “Ms. Fraser. you are young and you have three kids to live for. I can no longer wait for your insurance to be approved. So my next step is to have you come into the emergency room and be admitted into the hospital.” At this point, I had no other choice but to believe in my doctor and do as I was told. I was checked in and admitted. I was mighty scared. My doctor came in and explained to me my chemo plan. She informed me the only way for me to begin treatment was for her to keep me in the hospital and bill my insurance later. After talking to me about my treatments, she brought in the doctor who would be doing my radiation treatments and he informed me he would be doing my radiation treatments for free. I stayed in the hospital for over a month and a half. I even celebrated my birthday in the hospital all while doing chemo and radiation. Eventually, I was released from the hospital and able to go home – not to my kids but instead to a family member’s house because my house was over an hour away from the hospital. I continued my treatments and eventually the tumor was no longer there. However, the cancer had spread to my lungs. I had to have a small piece of my lung removed and started chemo all over again – and this time I lost my hair.”

Felicia Fe Fea’s Advocacy: Empowering Through Education: “I had been experiencing heavier periods for numerous years, but thought nothing of it until in 2017 when the bleeding turned into flowing out like a water fountain and giant blood clots that would randomly fall out. I had gotten to the point of having to wear Depends. I was pale and weak. I kept advocating for myself by asking questions to my OBGYN and my advocating and questioning were ignored and minimized. I was told it may be hormonal and I might be going through menopause. Even though I had been with the same OBGYN for over ten years, who knew my history of abnormal paps and who had performed two LEEPs on me which supposedly burned off the precancerous cells, had never checked for cervical cancer. Instead, they told me to eat rare steak and liver to raise my iron levels, shot me up with hormones, and conducted an ablation on me going straight through my cervix. During my ablation, the OBGYN talked about how she had not seen anyone bleed so much during this procedure but when I questioned her she stated how much experience she had and how she had done 100’s of these. As I bleed I was sent home with no answers. I continued to basically hemorrhage for months. I couldn’t work because large blood clots would just fall out randomly and the Depends could not even hold them. The doctor kept trying to force me back to work and kept suggesting a hysterectomy with no real diagnosis other than the heavy bleeding. I was so weak and tired of wearing Depends so I decided to go along with the hysterectomy. I had labs done and my numbers were so low I had to have a blood transfusion before I could have surgery. Not once did my OBGYN say “Let’s check for cancer”; even knowing my history, as if I were an experiment (much like the Mothers of Gynecology Anarcha, Lucy, and Betsey). I had my transfusion and was off to surgery in March 2018. The surgeon contacted me and stated she would be sending my cervix and uterus to pathology because it was “torn up”. After that, I got the ‘you have cancer’ call. My entire cervix was a tumor and I had stage 2B cervical cancer that had moved into my uterus.”

Moving Forward

Understanding the impact of cervical cancer on Black women requires a holistic approach that addresses cultural, social, and systemic factors. It’s crucial to amplify these stories, cultivate open dialogue, and promote education within communities. By acknowledging the unique challenges faced by Black women, we can work towards creating a healthcare landscape that is inclusive, equitable, and supportive for all. We can break the barriers and ensure that no one is left behind in the fight against cervical cancer.

Are you a cervical cancer patient, survivor, or thriver that identifies as Black? Share your story at Cervivor.org! Then join our private group, Cervivor Noir to gain support and learn how your story can create change.

My Story as a Traditional Asian Daughter

Both my parents immigrated from Thailand at a young age; met, fell in love, and had me. My grandmother and aunt moved from Thailand to Southern California, a completely foreign land, to help raise me while my parents strived to obtain their American Dream. Even though I was an American kid who listened to News Kids on the Block on the radio, I was still a traditional Asian daughter removing my shoes before entering my home and eating delicious home-cooked Chinese meals. Not only was I physically raised in the Asian culture, but I also absorbed all the traditional Asian characteristics as well.

I was taught to follow strict directions, strive for perfection, and above all conceal my emotions. When you are fortunate enough to be born with the “crying mole”, a beauty mark beneath my right eye, you are taught always to withhold your emotions and tears.  No matter how large the cut, or how much disappointment I felt for failing a test I was taught not to display any emotion. I know this might sound like a harsh way to raise a child, but crying and showing emotion was a sign of weakness in my family. My family wanted me to grow up to be a strong, independent woman while honoring my heritage and culture. 

My strength was first tested when I was diagnosed with HPV at 18. I was a confused hormonal teenager and couldn’t comprehend what was happening. My world was turned upside down and the worse part was I was alone. I couldn’t tell my parents for fear that I would disappoint them. I couldn’t call my friends because I didn’t know what to say. I sat in my truck alone, with the phone in my hand, listening to the dial tone and suddenly tears came gushing out. But somehow, the memory of when I fell off my bike and the sound of my aunt’s voice telling me, “You can choose to sit here and cry or you can clean yourself off and do something about it.” I chose to do something. I quickly started to research HPV at the university library. I needed to understand what was IN me, how did I get it and what could I do about it. I was shocked to learn what my doctor told me was a “minor instance” of HPV could be linked to cervical cancer. I immediately called my doctor and started the process of advocating for myself. I called and called until I got a second opinion from another OBGYN who confirmed that I had cervical dysplasia (CIN III). 

Life seemed to continue for me. I fell in love, graduated with a degree in English Literature, and got in engaged. A few weeks before walking down the aisle I received a call from my OBGYN that tested my strength yet again. My stubborn HPV decided to come back to life and I was diagnosed with 1A1 cervical cancer. In her calming voice, she said “You’re going to be ok. You did everything right, and we caught this very early.” I cried and through my tears explained that I was getting married in a few weeks. I remember the long pause in her voice as she took a deep breath and said “This is not going to take away your happiness, you go walk down that aisle and get married. Go on your honeymoon, and when you get back, we’re going to take care of you. Don’t let this stop you from living your life.” I got off the phone and cried as my fiancé held me until I fell asleep. I followed my doctor’s orders, hid the pain and fears, and got married on August 19th, 2006. And she was right, it was one of the happiest days of my life. 

I truly thought that I overcame the biggest obstacle in my life, surviving cancer, but I was wrong. My husband and I tried for years to have a child. We suffered miscarriages after miscarriages and failed infertility treatments. It was painful every time we got a pregnancy announcement from friends and family. I remember hiding my pain as I congratulated all my friends when I held their newborn children. I wanted a family of my own, but because of the various surgical procedures due to the HPV and cervical cancer, it was difficult. Finally, after years of trying we found out that we were pregnant. I was overjoyed! I knew from the start that even though I got pregnant carrying my baby to full-term was the ultimate battle.

At the start of the second trimester, my cervix (which was nearly gone) was “shrinking” and I was rushed into surgery to insert a cerclage to help keep my cervix closed. I was terrified. I could lose the baby I had wanted for so long. After the surgery, I was placed on modified bed rest, which consisted of coming downstairs once a day, only getting up to go to the bathroom and get food, but mainly off my feet. I told the doctor I would do whatever it took to keep my baby safe. I was hopeful that by restricting my movement for the second trimester I would be rewarded with the freedom in the third trimester.

Unfortunately, that was not the case. At the start of the third trimester, I was placed on full bed rest, only allowed to get up to go to the bathroom and shower once a day, and back to laying down on the bed. For two months I laid on my bed, holding back all the emotions I was feeling, in fear that I would lose the only strength I had left to keep my daughter safe. Finally, at the 30th week, the doctors felt that it was safe to remove the cerclage and release me from bed rest. I was FREE! I could finally see and feel my toes, I could feel the sunlight on my face and see the world again. But the best news, my daughter was safe. My daughter, Samantha Reagan Paguio was born on January 15th, 2013 in style, three days after her due date. 

I know my upbringing to some, might seem cold, restrictive, and harsh, but I am thankful for the matriarchs in my family: my mom, my Ama (grandmother), and my aunt. Their wisdom and traditional ways taught me how to harness my strength when I desperately needed it. Without them and their lessons, I would not be who I am today: a book editor, a mom, a friend, a wife, a daughter, and a Cervivor.

Joslyn Paguio graduated from the University of California, Riverside with a BA in Literature. She is currently a Senior Acquisitions Editor at Elsevier, overseeing the Neuroscience and Psychology book list. Since being diagnosed at 18 with HPV and then cervical cancer, with multiple recurrences, she has dedicated herself to educating others and advocating for the HPV vaccine. She is currently hosting a monthly podcast for Cervivor, interviewing cervical cancer patients and survivors, and addressing issues they face. During her spare time, she enjoys reading, cooking, and traveling with her family.