clinical trials

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.

Transcending Passion Into Purpose

When my chemo and radiation treatments ended in July 2013, I struggled to return to my normal life, including my career in agricultural field research. Physically, I no longer had the stamina to work in a corn field for up to ten hours a day. Mentally, I began to question if I was even passionate about my job anymore. I had just survived cervical cancer, so I didn’t want to waste another minute in a job that wasn’t fulfilling. I felt lost and knew I needed to find a new career path that would give me a better sense of purpose. 

I thought hard about what I was passionate about and how I could turn that into a career. I knew I was passionate about cancer advocacy but didn’t know how to apply that to a job quite yet. I found the field of cancer registry interesting but knew little about it. I thought about cancer registry off and on over the next few years but kept dismissing the idea of becoming a cancer registrar because it would require two years of schooling to become certified. 

Cancer registries are important because they reduce the burden of cancer on the community by improving patient outcomes and ensuring funding for public health cancer prevention programs. A cancer registrar is responsible for collecting, maintaining, and reporting cancer data on all cancer types diagnosed and/or treated within a hospital or other medical facility. This data is entered into a cancer registry system, or database, that is then reported to state and national cancer registries. 

Cancer registry data is used by many, including oncologists and other doctors to compare cases for treatment plans, researchers for clinical trials, public health officials for evaluation of cancer prevention programs, policymakers to determine state and national funding of cancer control programs, and cancer organizations for statistics (like the American Cancer Society). 

In 2020, amid the pandemic and working from home, I decided to go for it and enrolled in an online program to become a certified cancer registrar. I am now one year into the program and am enjoying every class I take. I feel like I have a sense of purpose that was missing.

Someone once told me that cancer registrars impact cancer advocacy, policy, and research. This is so true! Knowing that my future job will impact cancer in these ways is exactly the fulfillment I am looking for in a career. It may have taken an unexpected cancer diagnosis, a lot of personal reflection, and seven years to figure out a new direction for my career path, but by the Spring of 2023, I’ll achieve my goal of becoming a certified cancer registrar. You too, can start achieving your goals in 2022, by focusing on your passions with a willingness to persevere. 

Emily is an eight-year cervical cancer survivor who was diagnosed with stage 2B cervical cancer at age 30. After cancer, Emily didn’t realize she even had an advocacy voice until she attended her first Cervivor School in 2016. Today, she is a patient advocate and Cervivor Ambassador who shares her cancer story to raise awareness for ending cervical cancer and to educate others on the importance of cervical cancer screenings and prevention. Emily is the recipient of the 2020 Cervivor Spark Award and the 2022 Cervivor Champion Award. She plans to graduate with her certification in cancer registry in spring 2023.