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.

Clinical Trial Awareness Month: Cervical Cancer Needs YOU!

That first season of a TV, Netflix, or cable series is a total experiment. Producers wonder how the characters will resonate with the target audience. Advertisers are hopeful that their two-minute commercials and ads are crafted well enough to bring in sales. And actors cross their fingers that fans love each episode more and more, and demand a second season. The result: a cult following of a show that lasts for years, providing viewers the comfort of entertainment and solace.

While it may be a stretch, we can think about clinical trials in the same way. This method of medical research, is in fact, a pilot program for scientists to experiment, test, and prove what works, and what can result in medical breakthroughs – again, for the comfort and solace of those impacted by health challenges like cervical cancer.

You may have heard us at Cervivor championing the dire importance of clinical trials. We continue to stress the importance as this is the only way we can pave a way toward slowing down the loss of members in our community, thriving without having to lose parts of our bodies, and ultimately eliminating cervical cancer.

We said it before:

  • We need clinical trials to drive progress.
  • We need trials to determine the safety and effectiveness of every type of treatment.
  • And in order to determine that safety and effectiveness, we need volunteers.

We choose not to subscribe to the stigma around being a “guinea pig” or a “test dummy.” Without clinical trials, treatment, diagnosis, and prevention efforts are slowed down. The effectiveness of new medication, treatment, and therapy can only be proven through trial – and yes, error. Take a look at the thousands of trials around the globe currently recruiting patients, in addition to those that are active, completed, and terminated with results. Thanks to people including several of our Cervivor community members like Teolita, Erica, Jenn, and Linda much more work is being done daily to make sure our community – and the generation after us, and after them – can thrive.

“I decided that if this clinical trial was good enough for Jimmy Carter, it was good enough for me!” – Teolita Rickenbacker

It’s important to note that Cervivor advocates for cultural competence throughout our medical journey, including in the clinical trials process – and we should all be looking out for this. This means, making sure that the medical community understands, and is intentional about how they communicate with a diverse audience of women, whether Black, Brown, young, mature, and those who speak a language not native to their medical team. It is super important that the medical community, including those coordinating trials, speak different languages, and understand the experience of those who are part of a focus group. This important aspect aids in building and maintaining trust with those participating, which, in turn, helps us trust in both the process and the expertise of trial organizers.

This process takes a lot of teamwork: scientists work on hypotheses, patients report on progress and challenges, and doctors monitor outcomes. The result: an increase in clarity, more answers, more awareness, more options, and longer lives. Have a discussion on clinical trials with your care team and support system. Learn more with these recommended resources:
https://www.webmd.com/cancer/cervical-cancer/cervical-cancer-clinical-trials
https://www.clinicaltrials.gov/ct2/home

If you have experience with a clinical trial and want to share it with us, contact us at info@cervivor.org.