cervical cancer

We’re Part of the Process

Kimberly Williams, Cervical Cancer Survivor

In July 2022, I was invited to my first NRG Oncology semi-annual conference as a newly appointed Patient Advocate. Many of you might be wondering, who NRG Oncology is and what they do?

NRG Oncology comprises the National Surgical Adjuvant Breast and Bowel Project (NSABP), the Radiation Therapy Oncology Group (RTOG), and the Gynecologic Oncology Group (GOG). Together they have more than 150 years of cumulative experience in conducting practice-defining, multi-institutional phase II and III trials sponsored primarily by the National Cancer Institute (NCI).

I’ve never had the opportunity to attend a large oncology conference like this before. There were so many emotions that ran through my head as my colleague and I rushed hurriedly through the building to locate our next sessions to attend. One thought that came to mind was “the why,” like why am I here? After attending the Patient Advocates forum I found that my why never changed. It was for the patients and for our community.

Sitting in the meeting encouraged me and helped me realize that all the patient advocates desire the same thing: we want change. We are equipped with the knowledge to make a difference. We have lived through this experience personally. This meeting was easy (at least easier than I anticipated) as I spoke about my cervical cancer story and my “why” for patient advocacy.

Just as I thought, “This is simple,” the next morning I sat on the panel for the Cervix and Vulva Sub-Committee with physicians, researchers, and so many more experts. I sat down next to the committee chair, Dr. Charles Leath. It was at that moment I said, “This is not simple.”

I was overwhelmed with emotion but soon felt confident because I understood the presentations as they related to clinical trials because I went through treatment as a patient. This one moment shifted my thoughts from ordinary to extraordinary. I realized that my voice mattered and it was important. The NRG Oncology semi-annual meeting was an opportunity I will never forget because it was a reminder that your “why” should be at the forefront of your patient advocacy.

Morgan Newman, Community Engagement Liaison

I was a patient advocate that was chosen on the other side of the NRG Conference with the GOG Foundation patient advocacy efforts. To understand their organization, let’s look at the history behind the Gynecologic Oncology Group:

  • It was founded in 1970 at the American College of Obstetricians and Gynecologists.
  • In 1993, the GOG Quality of Life Committee was formed and patient-reported effects of chemotherapy was the main protocol for their clinical trial development to continue to improve patient quality of life. 
  • And in 2014, their trial GOG-240 showed improved survival rates when bevacizumab was added to chemotherapy for advanced cervical cancer.

Now, this is only a brief glimpse into what this group has accomplished. I was incredibly fortunate to have the opportunity to be one of two Mary “Dicey” Scroggins Patient Advocacy Travel Award recipients. Through this scholarship, I was honored at the GOG Foundation dinner, attended working committee meetings, and learned from the dedicated professionals leading the work in developing clinical trials.

What I learned during this conference was that the GOG has set the standards for cervical, endometrial, and ovarian cancers. They continue in partnership with NRG Oncology to strive for a better future for patient care and outcomes in clinical trials. This experience has made me feel like I was truly part of that process.

When I was diagnosed with a metastatic recurrence of cervical cancer in 2016, I never would have imagined being where I am today as a patient advocate. I really didn’t understand or know how my voice could help make a difference but every time I have an opportunity to attend and interact with experts in the field, I am quickly reminded just how important it truly is and how far I have come since then. Sometimes these feelings are hard to put into words. It can be overwhelming to experience this as a survivor and a patient advocate but it’s something I appreciate and I am forever grateful for.

Kimberly Williams and Morgan Newman are both cervical cancer survivors turned patient advocates. Kimberly represents her state of Texas while Morgan is in Iowa. They are both passionate about making sure the patient voice is heard.

Ending Cervical Cancer Starts with Us

Preoccupied much? It happens. Especially when caring for yourself and others, mourning loved ones, slogging through a global pandemic, and attempting to check off all of the things from your personal and professional to-do list. Because we were quarantined and protecting ourselves, we probably missed a few important benchmarks, library books that may have been due, or our annual dentist appointment may have fallen off the calendar. We know first-hand that everything simply can’t be done. But Cervivor does want to help you prioritize the following three things before summer’s out. (Don’t worry, you’ve got two more months to go!)

1) Stay up-to-date on screenings.

Did you know? Anyone with a cervix is at risk for cervical cancer. Each year, 14,100 individuals will be diagnosed and 4,280 will die as a result of cervical cancer. This disease is the only type of cancer caused by HPV that can be detected early by a recommended screening test. It is also highly curable when found and treated early. Knowing this we will continue to share information on risks, prevention, treatment, and resources.

Not sure of what guidelines to follow? Check out the American Cancer Society’s cancer screening guide, schedule your appointment, and have this meaningful conversation with your doctor.

2) Share YOUR story with others.

Your Cervivor story is unique. It helps others to feel seen. And it helps us feel heard – when we are ready to use our voice, of course. Sharing your story is also a crucial aspect in educating the public, caregivers, medical professionals, and even those funding cancer research.

Seeing and hearing your lived experiences amplifies what others, too, may be going through and helps to further research, offers a personal accounting of what cervical cancer looks like, and most importantly – empowers us more and more to thrive. Take a look at these beautiful testimonies, and consider sharing yours with Cervivor.

3) Start vaccinations early.

According to the June American Cancer Society 2021 HPV VACs Impact Report, about 3 to 4 million HPV vaccine doses were missed. “ACS health care partners maintained rates for 9- to 13-year-olds, growing shot series initiation by 2 percent for ages 9 to 10 and shot completion by 2 percent for age 13.”

Cervivor is happy to partner with organizations like St. Jude’s HPV Cancer Prevention Program, the American Cancer Society, and the National HPV Roundtable (to name a few)- all of which continue to help prevent HPV by increasing HPV vaccination rates for this age group. HPV vaccination can prevent more than 90 percent of these cancers if given at the recommended ages. 

Our new mantra is “start at 9.” Giving a strong recommendation for the 9-year-olds in our lives will increase vaccination success, according to the National HPV Roundtable. When we take our young people to health providers at age 9, it provides ample time to complete the HPV series before age 11, which is when they receive their Tetanus, Diphtheria, Pertussis (Tdap) and Meningococcal (MenACWY) vaccines. More than 75% of U.S. parents have chosen to protect their children from HPV cancer with the HPV vaccine.

Since August is National Immunization Awareness Month, let’s raise that number even more! Together we can end cervical cancer, once and for all! 

Take a look at how survivors in our community have shared their stories and are making a difference:

Need some additional help in prevention messaging? Take a look at the resources in this toolbox created by the National HPV Roundtable, and share with your networks, friends, and families. This impacts everyone, and with your support, we can change the course of cancer.