gynecologic 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.

Patient Advocates Matter

My cervical cancer story began when I was 24 years old. I had graduated from a local dental assisting program and worked in the field for only a couple of years when I was diagnosed on World Cancer Day 2015. I was completely devastated that cancer was happening to me! I mean, I knew I had a cervix but I was naive to the fact that I could get cancer “there.” And wasn’t it most common for older people, not younger people, to get sick? That’s when I realized how gravely wrong I was. Didn’t I just witness a high school friend succumb to cancer just a year before? She passed away at the young age of 27 and I truly thought that was going to be my destiny. I didn’t know anyone else my age that was going through it.

All throughout my treatment, I placed blame on myself for getting cancer, and even though I felt that deeply, I knew I wanted to do something more to help others. I wanted them to know about cervical cancer and how Planned Parenthood saved my life with their preventive screening services. I wasn’t sure how to start advocating or sharing my story, so I started spreading awareness by handing out little ribbons I made. (Some of my friends still wear them to this day).

If you would have told me back then I would become an award-winning patient advocate, I never would have believed you. You see, I’ve suffered from social anxiety throughout my entire childhood and adult life. It wasn’t until I was finished with cancer treatment that I found out about Cervivor, signed up for Cervivor School, and grew into the patient advocate I am now.

I have been involved with the organization since 2017 and have been presented with some pretty incredible opportunities – including employment by the organization. I started in 2021 when everything had been pretty virtual but this year, in-person events have started happening more frequently. Team Cervivor, consisting of Cervivor Founder, Tamika Felder, and myself, made the decision to attend the annual meeting of the American Society of Clinical Oncology (aka ASCO). As a first-time attendee, I can say I was completely blown away! This event was massive and full of oncology’s leading cancer researchers, clinicians, thought leaders, industry partners, advocates, and so much more!

We kicked off the week-long conference with a breakfast meeting in which we were able to connect with so many people – putting names to faces that we’ve been working with via Zoom meetings and emails for the last few years. We had a constant line of people waiting to talk with us about our work and hear our stories. It could have been the lack of caffeine but it really didn’t hit me until midway through that breakfast – the impact of our work as patient advocates is crucial in the oncology world. This made me even more proud to be working for the organization that gave me my voice.

Dr. Martina Murphy was one of these people who expressed just how important our work is including our Comfort Care & Compassion Program. She says, “Cervical cancer is a disease where we need so much more attention and work. The impact of this group is powerful.”

We continued to attend meeting after meeting and heard a consistent message across the board: we are dedicated to putting equitable patient care as our priority. We heard how patient advocate voices have a seat at the table and how we are leading engagement for some important topics across social media platforms. The realization hit me once again: We make a difference every day. Patient advocates matter.

Now, we made sure to celebrate a little while we were in Chicago too. The Sunday of the conference was a day recognized as National Cancer Survivors Day and we had A LOT to celebrate: Tamika was 21 years cancer free and was given the most exceptional gift and I was just days from officially being 6 years cancer free. We made sure to spend time with some friends and partners – both new and old, to eat incredible food, and to take time to unwind.

It has truly been eye-opening and so rewarding to see the kind of impact my story has had in the last several years. It’s been a lot of hard work and it’s taken time to see the results. But I know it’s not just my story in this. It’s the collective of our stories pushing for the same mission: to end cervical cancer once and for all.

Morgan Newman, MSW, Outside of her Community Engagement Liaison position at Cervivor, you can find Morgan nurturing her relationships with local community partner organizations like the American Cancer Society Cancer Action Network (ACSCAN), the Iowa Cancer Consortium, and serving as a board member for Above and Beyond Cancer. Learn more about Morgan at Cervivor.org.