HPV

Cervivor Colombia

Sometime in 1999, while I was battling cervical cancer, a young doctor told me “you need to learn as much as you can about your cancer.” I didn’t know there was anything to learn. It was cancer, after all, but I never forgot his words and started searching for information. Cervical cancer was not something I had heard of before and HPV was not even mentioned in my diagnosis, as I was never tested for it. Once I started learning about the link between cervical cancer and HPV and how common HPV infections were, I decided to talk about it with my friends, family, and whoever wanted to listen. Not surprisingly, I found out most of my friends and family had never heard about HPV, let alone suspect they may have come in contact with it at any point in time. That’s when I realized I needed to talk to others about HPV, this common but dangerous virus that can lead to cancer. While I was open to sharing information, I always felt like a lonely voice that would never have any significant impact. I would’ve never imagined that one day, I would be sharing my story in Colombia.

Cervivor:

I first connected with Tamika online in 2009, but it wasn’t until 2015 that I met her in person after she insisted I attended my very first Cervivor School; she assured me I needed to do it. I really needed Cervivor. The feeling of being among other women who shared, not only my diagnosis, but a commitment to eradicate cervical cancer, cannot be described. I left informed, prepared, and empowered to share my story, I knew my experience as a survivor would move others to action. I was part of a strong community of advocates. I was convinced that our stories and our voices could save lives.

Over the years I’ve shared my story online, one on one, and at various events, and while I knew I was doing my part to eradicate this cancer, it never feels like I’m doing enough. You see, as a woman of Latino roots, I feel a burden for my Latino community; after all, we have the highest rates of cervical cancer, and are #2 in death rates due to this disease. There’s certainly more work to do and I, along with the other Latino Cervivor Ambassadors carry this desire to impact the Latino community with us. Recently, I had an opportunity to do just that.

Cervivor was recently contacted by a company, that, after hearing one of our Cervivor Ambassadors share her story, knew that the voices of cervical cancer survivors was a missing piece in their efforts to eliminate cervical cancer in Latin America. They wanted us to join efforts with them, knowing the impact our stories could have. I was lucky enough to be the first one to join in this effort and soon I found myself on a plane to Cartagena, Colombia.

The day of my flight I was proudly wearing my Cervivor Ambassador shirt; after all, our organization, our network of cervical cancer survivors was about to leave its footprint in Latin America. Finally our stories, the stories of Cervivor were going to have an impact in the health of the women of Colombia. I was nervous and I was excited, I couldn’t wait to get there.

I shared my story at a medical conference; the room was reserved to host 200 individuals, the doors had to be closed after counting close to 300. Yes, close to 300 Colombian gynecologists, obstetricians, and other health professionals came in to hear the latest on HPV testing and the story of a cervical cancer survivor. Afterwards, some stopped by to ask questions and talk about the challenges they face with their patients, wanting to know what could be done differently to help their patients. What an incredible opportunity I’ve been given to be the patient voice!

During this trip I was able to meet with some of the lead doctors that are developing and implementing HPV screening and follow up guidelines in efforts to reduce the rates of cervical cancer cases and cervical cancer related deaths in this beautiful country. They shared with me the trouble doctors are having communicating with their patients. When women are told they have an HPV infection, shame takes over them, even though they’ve done nothing wrong; some worry about what to tell their husbands or relatives, and the shame they feel is at times is so much that they don’t return for follow up. For others, the problem is accessing care as they live in remote areas, or overcoming cultural and/or religious barriers… and thus the cancer rates continues to rise.

The good Colombian doctors are committed to helping the women in their country and they think our stories will help these women know they are not alone, that it is okay to ask questions and follow up with their doctors, that they did nothing wrong, they did nothing to deserve cancer. It is believed that our Cervivor stories will make a difference and get these women to go to their doctors for their Pap and HPV tests and the needed follow up. The doctors want their patients to have Cervivor contact information and we are ready to welcome them to our supportive community. It was truly an honor to be part of these conversations.

I felt right at home in Colombia; the warm weather, the colorful buildings, the sound of the ocean, the tropical fruits I love so much… but what I loved the most, was the warm and welcoming Colombian people. I met so many people who are committed to improve the health of Colombian women and I can’t wait to go back to follow up on our work there.

As I was flying back home, I kept thinking about my doctor’s words 19 years ago and about my first Cervivor School, as both of these things had such a big impact in my life. He may never know it but Dr. Rivera-Gautier planted a seed that later Cervivor would feed to make me an advocate. A recent story on ethnic and racial disparities in cervical cancer stated “globally, a woman dies every 2 minutes from this entirely preventable disease”[1]; I am proud to be part of an organization that is working hard to change that.

[1] Ethnic and racial disparities in cervical cancer: lessons from a modelling study of cervical cancer prevention

Ginsburg, Ophira et al.

The Lancet Public Health , Volume 3 , Issue 1 , e8 – e9

Read Maria’s Cervivor Story here.

 

But Mom, I don’t want a shot – HPV Vaccine in my Family

1 Week Prior to Doctor Appointment

Zoe: “I don’t want to get a shot. Will I have to get a shot?”

Me: “Yes, you will have to get at least one shot.”

Zoe: “I DON’T WANT TO GET A SHOT! Why? Why do I have to get a shot?”

Me: “To keep you healthy.”

Zoe: “But I don’t want to get a shot!”

Repeat, at least twice an hour, all waking hours.

1 Day Prior to Doctor Appointment

Zoe: “Mama, please! Please, I don’t want to get a shot. Why, do I need a shot?”

Me: “To keep you healthy. I know you don’t want one. No one wants to get a shot. But it is important.”

Zoe: “But why? WHY? I’ll do anything. Please I don’t want to get a shot!”

Me: “It isn’t negotiable. You have to get a shot to keep you healthy. “

Zoe: “Please! I don’t want a shot!”

Repeat, at least 4 times an hour, all waking hours.

Day of the Doctor Appointment, In the Car, On the Way There

Zoe: “Why? Why?! Why, do I have to get a shot? Can I please not get it?”

 

It was then that I opted to pull the car to the side of the road. I felt exasperated, annoyed, and exhausted by this discussion. My daughter has just turned 11 and we are on the way to her well child exam, where I know she will be the recipient of at least 1 shot. I know this because, at 11 years old, she is now eligible to receive the HPV vaccination. I know that I will be requiring this vaccination for her.

My daughter was just 8 years old when I was diagnosed with Stage 2 cervical cancer. I never told her that I had cancer. I never used the actual word cancer to describe what I was going through. I was concerned that it would cause her more fear than I wanted for her. So, I told both her, and her 6 year old brother, that I was sick. That I had a problem in my tummy, and would point to my lower abdomen. I told them I would have to have surgeries and take medicine that seemed to make me sicker, but was actually helping me to get better. Each of my young children watched me suffer through chemotherapy, internal, and external radiation, 4 surgeries, multiple ER visits and many hospital stays.

What I went through fuels the effortless decision to get my daughter the HPV vaccination.

HPV is the cause for cervical cancer. Statistics show at least 80% of people will contract at least one strand of HPV during their lifetime. Most people will fight off this virus on their own. Others will not be so lucky, and the HPV will cause precancerous or cancerous cells to grow. It was time to have a conversation, on the side of the road heading into the Dr office.

Me: “Do you remember when I was sick? Do you remember how much pain I was in and how you had to visit me in the hospital? Do you remember that when you visited me I had a needle in my arm? That needle had to stay there. For days. For almost a week. I had to sleep with it in my arm. Do you remember how hard it was for all of us? How we had to leave our apartment and live with Grandma and Grandpa? How I couldn’t take care of you?” I hate reminding her of this. I hate reminding myself of this. I wonder if this is the right thing to say. “This shot they are going to give you today, the one you don’t want, it will protect you from getting the sickness I had. This shot will protect you so you won’t have to go through the sickness that I had. This shot will prevent you from possibly needing many others and getting poked with many more needles. That is why you have to get it. That is why it is not a choice. That is why we are doing it.”

Zoe: “Then why didn’t you get it when you were a kid?”

Me: “Doctors didn’t have this shot when I was kid. I wish they had, but they didn’t. You are lucky that they have it now. You are lucky to be able to get this shot!”

Zoe: “Will Isaac have to get it?”

Me: “100%.”

 

As for Isaac, he is currently 9 years old. My insurance will cover him receiving the HPV vaccination when he turns 11. He will, 100%, be getting this vaccination as well.

The choice to vaccinate my son against HPV is just as uncomplicated and straightforward as the choice to vaccinate my daughter. Almost every person who is sexually active will become infected with HPV at some point in their lives, if they do not receive the vaccination they will be left at risk for the high risk cancer causing strands of HPV. “Most men who get HPV never develop symptoms and the infection usually goes away completely by itself. However, if HPV does not go away, it can cause genital warts or certain kinds of cancer,” (cdc.gov). Someday, my 9-year-old son will have a partner. Someday he will be sexually active. I want to protect not only my son, but his future partner as well so deciding to treat with medication was a must. HPV is spread through skin to skin contact, so even if he and his partner practice safe sex, there is a high likelihood, that if not vaccinated he would spread HPV. HPV can cause not only cervical cancer in women, but penile cancer, anal cancer, vulvar cancer, and oral cancers. While women can be screened during their annual pap exams for HPV, there is no test for HPV in men, and usually, men who carry HPV show no sign or symptoms of the virus. He would never know if he had the virus. So, my son, if not vaccinated, would unknowingly be passing this virus on to his partner, and could potentially be at risk for cancer himself.

Many people wish for a cure for cancer. People discuss and post prayers and thoughts for cures all the time. But, we have a vaccination now that can prevent specific types of cancer from ever occurring! Isn’t that better than a cure? If you could prevent your child from having to suffer, why would you ever make the choice not to? The risks for the HPV vaccination are negligible, especially when compared to the likelihood of contracting the virus, and the horribleness of actual cancer treatments. Choosing to vaccinate both my daughter and my son against HPV is a no brainer.

In the doctor’s office

Zoe: “I don’t want to get this shot, but I know I have to.”

Me: “Yes. You have to, because I love you to the moon and back, and I never ever want you to be as sick as I was.”

 

I know I will say the same thing to my son when it is his turn to get the HPV vaccination.

Do you have questions about HPV and the HPV vaccine? Take a look at these resources for more information.

Cervivor: https://cervivor.org/hpv-and-cervical-cancer/understanding-hpv/

CDC: https://www.cdc.gov/std/hpv/stdfact-hpv-and-men.htm

Read more about Ana here: https://cervivor.org/stories/ana/