Cervical Cancer – A Cancer with a Stigma & Shame

Patti Murillo-Casa is a 12-year cervical cancer survivor

I am a baby of the late 1950’s, a “Baby Boomer,” and I am of Nicaraguan descent. I was born in the US, but both of my parents were born in Nicaragua, Central America. Even though I was born in the US, my grandparents raised me in Nicaragua until the age of eight. At that time, I returned to live with my parents in New York City.

Growing up, we never spoke about menstruation, sex, or anything related to reproductive health at home. It was taboo. My mother never had “the talk” with me. There were no birds and there were no bees. I honestly do not know if she ever saw a gynecologist or had screenings on regular basis.

Schools did not teach sex education in those days either. I learned as I went along, hearing bits and pieces from my friends. It was like having many individual puzzle pieces and trying to put them all together without understanding the whole picture.

I lived a sheltered life when it came to sex education, so, it is no wonder that, even though I am educated and well rounded, this was a subject that I did not know much about. I only knew the basics. Is it sad? Perhaps–but this is the way Latino parents have raised their kids for many generations. I wish someone had taught me about bodily development, and the broad variety of topics related to sex and sexuality to have gained the skills needed to manage my sexual health.

Even today, Latino households are not having the “talk” with their children. Do not get me wrong—there has been improvement, but there is a lot more we can do.

Unfortunately, cervical cancer in some cultures is perceived to be a cancer of sexually promiscuous people. I believe this causes great stigma and shame. We need to remove the stigma that creates shame from the equation. We can do this by first knowing the facts of this disease, and educate others and ourselves. Educating the next generation properly is important. Teaching them about all the risks that exist besides getting pregnant at an early age.

At the age of 48, as I was wrapping up a career with the NYC Police Department, I was diagnosed with stage IIB cervical cancer. This came as a complete surprise. I had no idea what cervical cancer was nor what caused it. I did not even know anyone who had cervical cancer or even heard about it. It was not until my doctor explained it to me that I somewhat understood what was going on.

Nevertheless, I felt ashamed. I had a cancer in my cervix inside my vagina. My anxiety built up, not because I had cancer, but because I did not know how I was going to explain it to my family. How am I going to explain that I have a cancer linked to HPV, a sexually transmitted virus? How was I going to use words that had never been used in my household, in any of our conversations? I was going to be judged. They would think that I had been promiscuous or even unfaithful to my husband. However, none of this was true.

I had to do something, so I educated myself so I could properly explain it to my family. I thought that, if they understood what was happening to me, they would not pass judgment. Nevertheless, in all honesty, I still felt ashamed. The feeling of shame took much longer to leave me even though I had educated myself, but eventually, I got shame resilience. The shame resilience came with time. A particular belief passed from generation to generation is hard to change and hard to let go.

Today, I am an advocate and an educator on cervical cancer. I educate women, especially Latinas, on the tools we have to prevent this type of cancer. Latinas are the most diagnosed with cervical cancer. The two main reasons why are lack of knowledge about the disease, and lack of screening. However, this does not have to be their fate.

I am an advocate also because I want to support women as they deal with this diagnosis. No women should feel alone on this fight, and no women should feel ashamed of a cancer below the belt.

So, just in case you were wondering, I talk about the vagina, the penis, my sex life, and I share my story without feeling any shame.

I consider myself one lucky patient because I have the most wonderful gyn oncologist. He is compassionate, understanding and ready to answer any or as many questions that I may have without any judgement. The day he delivered my diagnosis to me, he saw my confusion and perhaps my shame. He took my hand said, “Don’t worry; I will travel this journey with you.”

A doctor’s communication and interpersonal skills are very important to the patient. It helps build the doctor-patient relationship, which is crucial in the delivery of high-quality health care.

January is cervical cancer awareness month. Ending cervical cancer is within our reach by awareness, education, screening, and vaccination.

Patti Murillo-Casa is a 12-year cervical cancer survivor, a retired NYC Police Officer, and a women’s health educator and advocate. She is the NYC Ambassador and Wellness Instructor to the Cervivor organization. Cervivor is a global nonprofit organization that brings cervical cancer survivors together to spread awareness, educate, and support other women. She is also a member of the community advisory board and the patient advocacy advisory board at Columbia University Herbert Irving Comprehensive Cancer Center.