HPV related cancer - Cervivor

I started treatment for cervical cancer in spring of 2016. One of the first things I did was start searching for those with my cancer. When I found Cervivor, I immediately knew it was special. It was a sisterhood of survivors, but they were also advocates! Cervivor was dedicated to eradicating our cancer. It wasn’t just a group of women looking for support, but it was a group of women who had been through it and were DOING something! I like to say that joining Cervivor and being trained at Cervivor School has given me advocacy wings. I have had many opportunities both in my community and on the national level to participate in events as a Cervivor Ambassador. Most recently I was asked to represent our organization at the National HPV Vaccination Roundtable, in Atlanta. I had interacted on the Roundtable’s Facebook page, and felt like I had working knowledge of the collaboration. They are about stopping HPV…sign me up!

The Roundtable meeting began with a lunch. I arrived alongside Tamika Felder, Cervivor’s founder. The first thing I noticed was that we could hardly get to a spot at a table because everyone was wanting to speak with Tamika. They would greet her, as lifelong friends. Many of them had questions about Cervivor and other projects Tamika has in the works. Attendees were quickly inquiring about me and my role. They were interested in me as a Cervivor Ambassador and very excited to meet an HPV cancer survivor. I began to realize what it meant to be at this meeting. These were the countries top doctors, healthcare professionals, and researchers who had worked in this space for years! These were representatives from other organizations, our (Cervivor’s) partners in eradicating HPV and HPV related cancers! Tamika and Cervivor had been part of this collaborative group since it’s inception! I was so proud to be a part of a cancer nonprofit that is so well respected in this space. It further affirmed my initial feeling that when I found Cervivor, I found something special.

“Empowering Parents and Allies” task group

The meeting was an exciting two days packed with a lot of information and a lot of work! Each organization that is part of the Roundtable sends at least one representative. Those representatives are broken into task groups of their choosing. The task groups are just that, groups with an assigned task to help advance vaccination rates in the U.S. and spread awareness, education, and facts about HPV and the vaccine. The public educator in me was drawn to the “Empowering Parents and Allies” task group, as reaching families with knowledge is at the heart of many things I do. Most of the first day was spent in our task groups, reviewing previous work and annual goals, as well as setting new goals and collaborating with other task teams that may be partner groups in reaching these milestones. Our first evening was full of dinner presentations with updates from each task group and a celebration of the hard work and victories achieved by the Roundtable throughout the year.

The second day of the meeting was just as full. Each moment was packed with presentations from medical teams who are on the front line of vaccinating in the family practice setting, to panel discussions from research scientists on how the social media statistics can work in favor of our messaging. We had a working “Jeffersonian Lunch,” ensuring that time was purposeful and well spent. Every second was full of collaboration, information, and getting to the center of how we can change the HPV vaccination narrative in our country and strive to significantly reduce HPV cancer rates.To be honest there was so much information, that I joked with one of the other attendees at our table about how absolutely full my brain was by the end of lunch on day two. It felt as though it could not hold one more piece of information, fact, or even tidbit. I had officially hit my limit and the “meeting glaze” took over. You know, the glaze you get when the presenter’s voice starts sounding like the Charlie Brown teacher?

It was an honor to work with such an amazing group of professionals. My eyes were opened and faces were given to the people who are diligently working to spread the truth about HPV and a vaccine that is cancer prevention. How exciting to see the position that Cervivor holds among the nations top scientists, doctors, and cancer organizations. We are part of that! We are on the front lines of eradicating HPV! Cervivor is right there, side by side, elbow to elbow! We are rolling up our sleeves and deep into the space of changing the narrative on this virus and educating the public on how acting now can impact generations to come! I was so proud to be a part of this National Roundtable, but I was even prouder to be representing Cervivor. We’re in!

Holly Lawson is a two year cervical cancer survivor. Cancer has left her with many challenges, including Chronic Kidney Disease, but she is fighting for her survivorship and currently training with the Ulman Cancer Fund in the Cancer to 5K Program. She is an active Cervivor Ambassdor, who is finding healing in advocacy and sharing her story.

I would like to address (without attacking) all the concerned mothers out there who have recently read into all the false information regarding the Gardasil vaccine.

First of all, I would like to say I understand why some mother’s are hesitant to give their children the vaccine. After reading the intent of these articles, who wouldn’t be. But let me reassure you the vaccine is safe and millions of pre-teens receive it every year.

shutterstock_186335381-375x250 I feel with so much false information circulating social media it’s easy to believe these stories. For example, I just read an article claiming how Dr. Diane Harper was the “leading researcher” for Gardasil and Cervarix, this information is totally false and also claiming how children don’t need the vaccine. Dr. Diane Harper backs that statement up by telling mother’s across the world that our bodies “can clear the infection in 2 years”.

When actually, researchers don’t truly know if our bodies fight it off completely. We also don’t know why one will develop cancer and another won’t. It’s so dangerous to me that someone with no scientific proof of these alleged injuries caused by Gardasil could urge mother’s to look into the vaccine before vaccinating their children to PREVENT cancer. Let me also remind you, anyone can report a side effect that may have absolutely nothing to do with the Gardasil vaccine. We have to be better advocates for our children, we need to get the facts and not some Internet medical bologna.

I would urge women to go the CDC.GOV /HPV.com for accurate information regarding the Gardasil vaccine and HPV-RELATED cancers.

PicSayPro$201f50903_101111-picsay I knew very little about HPV, nothing of cervical cancer or all the other cancers HPV can cause. In 2006, I actually denied the Gardasil vaccine because I too was misinformed. Let’s fast forward to 2014, after never missing a Pap smear or ever having an abnormal Pap smear, I was diagnosed with stage 2A1 cervical cancer. I couldn’t believe it, I was so pissed and after all isn’t it preventable with annual Paps? I was so angry, I pulled all my medical records and contacted an attorney right away. How could I? I was healthy and took care of myself, I feel when tragedies happen to us we naturally want to hold someone or something accountable. I now have recurrent cervical cancer and currently, there’s no cure. I would do ANYTHING to protect my children, I would die for my children and coincidentally I’m fighting for my life; for my children. I will be vaccinating both of my boy’s to prevent HPV-related cancers, genital warts and to also protect their future partners.

I too was misinformed and not vaccinated. I would give anything to have Gardasil available when I was a pre-teen. The numbers of HPV infections are dropping, the vaccine works guys so protect your children. Cancer is horrible and HPV doesn’t discriminate.

Please talk to your pediatrician or better yet, call the CDC. Too many people are suffering from the affects of HPV. Get your info from a reliable source and not some hocus pocus on the Internet. Ask yourself why are we denying science and why have we become a generation who is opposed to vaccines that have been saving lives for decades? There is no hidden agenda, vaccines work.

Don’t you want to protect your children from potential cancer? I do…

Jillian Scalfani is a #Cervivor of cervical cancer, not once but twice and she’s currently in remission and her goal is to educate and empower women on the facts of HPV and HPV-related cancers.

She is a long time Massachusetts resident, mother of two and a hairdresser. She enjoys spending her time with her family and friend’s as each day is a gift and takes nothing for granted.