Hispanic Heritage Month: Beyond the Taboo

Karla Chavez, Cervivor Ambassador & 2022 Cervivor Champion Award Recipient

In the months of September and October, we are celebrating our Hispanic heritage.

History supports our struggle and power to overcome difficulties. We are brave, passionate, and colorful people. We also come from many beliefs and cultures, some of which can be obstacles.

It is a reality that many Latinas die from a disease that can be prevented. The lack of education, the lack of specialization of our doctors, and the HPV taboo are our challenges to overcome in order to win the war against cervical cancer and other cancers caused by the Human Papillomavirus.

I was 34 years old when I was diagnosed and in a country where our sex education is given in science and biology classes, but discussed little outside the parameters of our classrooms. Being able to accept and share that my cancer was caused by HPV gave me freedom. I talked about it with my family, and I remember having the feeling of, “What are they going to think of me?“ They really didn’t care. Their only concern was my health.

Being diagnosed with a cancer caused by HPV carries with it a taboo in my culture. We often do not discuss this with anyone because we do not want them to judge us, much less reject us. Many times we struggle alone with feeling guilty. This stigma must be overcome. We must trust that we will find support, in our family, in our friends, and/or in faith. The way to overcome this issue is to talk about it without fear, so that the next time we hear about cervical cancer, it’s because it is being prevented. We want our communities getting vaccinated and that we don’t wait ages for our doctor appointments.

A doctor told me, “the vast majority of us will have an HPV infection at some point, what we need is to remove the stigma behind those three letters and attack it.” 

This resonated with me. It made me feel that even though I didn’t know much about what was happening to me, it wasn’t my fault. It is something that I had to go through, and I must overcome it.

Karla with her Madre & Abuela

Once I took away the power that guilt had over me, I began to fight. I have had the joy of having my family as my support team. We have fought with a lot of faith and love. Which is one of the characteristics of our Hispanic culture, keeping us together as a family no matter the situation.

I am also sure that my doctors were the answer to my prayers in my moments of fear. I received 8 chemotherapies and 35 internal radiation treatments. After a total hysterectomy and colostomy surgery, I have made it my mission to never shut up about what I went through. Because to someone out there, something in my story will resonate and they will act. Either getting vaccinated, scheduling their cancer screenings, or vaccinating their children.

I’m still here to celebrate life and the month of Hispanic heritage. I’m still here to tell you that cervical cancer can be prevented. That there is a vaccine that can save the lives of hundreds of thousands. I’m still here to talk to everyone about the vaccine and prevention.

When I was diagnosed, I wanted to fight and win. Now that I celebrate 5 years without evidence of disease, I want to fight and overcome the stigma, the lack of education about HPV, and its relationship with various types of cancer.

After attending Cervivor School I learned how to share my story, how to speak up, and be the voice that can resonate with someone else.

I have had the opportunity to participate in talks at universities, high schools, religious groups in my country, and in workplace meetings, and always that I can to each person that wants to listen.

I want everyone to get the HPV vaccine, to make their cancer screening appointments so that together we can dream of a Honduras and a world free of cervical cancer.

Fellow cervical cancer survivors/patients, I leave you with a mission: Share your story, because your story will resonate with someone.

Visit Cervivor.org to share your story with an easy-to-follow template!

Karla Chavez is from Honduras and she is a civil engineer and amigurumi enthusiast. Karla is a 5-year cervical and thyroid cancer survivor and a proud ostomate. She is a Cervivor Ambassador, a 2019 Cervivor School graduate, a Cervivor Champion Award recipient, and is a key support to our growing Cervivor Espanol community.

An Advocacy Spark

From A Tiny Spark May Burst A Flame – Dante Alighieri

A few months ago I started planning for what would be my “coming out” party so to speak.  Kind of like a debutante coming out to society, I wanted the world to know that I had cervical cancer caused by HPV.  Wow that felt so good to type.  The event was planned for January during Cervical Cancer Awareness Month and the idea was simple, have a few close family and friends over to hear my story, watch the movie Someone You Love: The HPV Epidemic and answer any questions.  I had no idea how much of impact this event would have.
So let me rewind a little bit and tell you what brought me here and my “why”.  In 2009, I heard those three awful words, “you have cancer”.  I had cervical cancer and it was a result of HPV 16 and 18.  What is that you ask? HPV is the human papillomavirus and there are more than 100 types of HPV and just a little more than a handful are high risk or cancer-causing.  HPV 16 and 18 cause about 70% of cervical cancers.
When I was first told I had cervical cancer I had no idea what that meant.  I had no idea what HPV was.  More importantly, I didn’t know anyone who had or was going through what I was.  It was extremely lonely.  Not only could I not relate to others, I had family members who associated HPV with a stigma and told me things like it was because everyone sleeps around.  That hurt beyond imagination.  I was silent about HPV.  Someone I looked up to made me feel like I did something wrong.  But I didn’t, they were just ignorant.  At the time I did what I do best, I went to the bookstore to find anything that may help me.  8 years later, 1 LEEP, 2 cone biopsies, an infection that almost killed me, 11 lymph nodes removed, and a hysterectomy I have finally found my voice to tell my story, I discovered “my why”.  I have finally found the courage to talk about HPV.
That brings me to my event, my “coming out” so to speak.  There were about 15 people in total that included family, friends, and neighbors.  Most everyone there had children ranging from around age 7 to their early 20s.  To make the evening more special I was honored to have Tamika Felder, the founder of Cervivor there by my side; and I was honored to have Kelly there representing Team Jillian.  Jillian is a Cervivor sister we lost this past September and I love that her close friends and family honor her by continuing to talk about cervical cancer and the HPV vaccine.

I could not have asked for a better evening, we even had a teal cocktail made by the very awesome Justin who was sporting a teal shirt.  Before the start of the movie, I gathered everyone
around to make a few comments and tell my story.  It was the first time I did this to a group.  I was so nervous, but once I started talking it was so easy.   I believe it was said in Cervivor School, no one knows your story better than you.   My best hope for the evening was that I would tell my story and we would watch the movie.  My goal was getting me over the nerves hurdle with people I knew.  But wow my goal was exceeded.  At the end there were questions.  There was interest.  There were women who were ready to go back to the doctor.   Moms who wanted to share the information with other moms in our community, people who were happy their kids had the vaccine, but they didn’t understand at the time how important.  Knowing that I was able to reach someone with my story, for me this was most definitely a tiny spark that had lit a mighty flame.
January is Cervical Cancer Awareness Month – there is still time.  Are you ready to have your “coming out” and share your story?  Cervivor is a great place to share your story and it has an easy to follow format which can guide you.
— Cervivor Amassador Tina Vetreno
Read more about her story here: https://cervivor.org/stories/tina-2/