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“No Person With Cancer or Survivor Should Ever Feel Alone”: A Patient Advocate’s ASCO Annual Meeting Story

Voices on Cancer is an award-winning Cancer.Net Blog series where advocates share their stories and the lessons they have learned about being a cancer advocate. Robert S. Greene is a cancer survivor and patient advocate from the Netherlands. He is the founder and president of the HungerNdThirst Foundation, a patient advisory committee member of the European Cancer Organisation, an advocate for Inspire2Live, and an advisory board member for several other organizations. You can follow him on Twitter. View Robert’s disclosures.

My patient advocacy story

In October 2012, I was diagnosed with stage III colon cancer. After my treatment with surgery and chemotherapy, I planned out a timeline for how I thought everything should go, including when I expected to be back on my feet doing everything I was doing before my diagnosis. I knew that my treatment would impact my life to some extent, so I gave myself extra time to fully recover. Little did I know at the time how drastically cancer would change my life. In 1,000 years, I never could have imagined how my cancer diagnosis and treatment would turn everything I knew upside down. I went from thinking about where I would spend my summer vacation to focusing on being alive to see the next summer.

Having worked as a health care professional, I thought I knew what to expect from the side effects of cancer and its treatment. Naturally, I expected some fatigue. However, I did not expect to be so tired that I couldn’t even lift my arms to answer the phone. I also experienced nausea so extreme that I worried my health was worsening. Then there was the dysgeusia, also known as paraguesia, which is a change in the sense of taste. Within 2 weeks of my first chemotherapy treatment, everything I ate and drank tasted like metal. This was surprising to me, and I wanted to know if other people with cancer experienced the same side effect. I assumed there must be a solution, something to help me—and others—deal with this.

At that point, a seed was planted in my mind for what would become the HungerNdThirst Foundation. Founded in 2016 as a public benefits organization, the HungerNdThirst Foundation focuses on improving the quality of life for people with cancer dealing with challenges from cancer treatment, such as dysgeusia. Founding this organization marked the start of my journey as a patient advocate.

Today, creating awareness, developing policies, and encouraging research focused on malnutrition and the nutritional care of people with cancer are some of the issues I focus on as a patient advocate. Malnutrition impacts quality of life and treatment outcomes. It also contributes to increased mortality among people with cancer.

In addition, as a person of color, I consider it my duty—and an honour—to advocate for equality and diversity in health and social care. This is especially important because discussions on equality and diversity in health and social care are often ignored.

Why the ASCO Annual Meeting is important to me as a patient advocate

In 2017, I first heard about the ASCO Annual Meeting and dreamed of attending someday. The next year, I was awarded a scholarship from Conquer Cancer, the ASCO Foundation, and traveled from my home in Amsterdam to the ASCO Annual Meeting in Chicago, Illinois.

Often, I found that my life with cancer left me feeling isolated. It can be hard to explain to others what it is like to have cancer or be a cancer survivor. Attending the ASCO Annual Meeting for the first time reminded me that I was not alone, and no person with cancer or survivor should ever feel alone. That ASCO Annual Meeting experience was everything I expected and so much more. I had the opportunity to meet fellow advocates and exchange stories. The meeting also helped me gain more knowledge on research in the field of oncology. As a cancer survivor, seeing the different presentations and hearing about the progress made in oncology made me hopeful for the people with cancer who are the reason for my advocacy.

I hope that other advocates try to attend the ASCO Annual Meeting, whether online this year or in person in the future. Perhaps you, like me, need to be reminded that you are not alone.  

What other patient advocates say about the ASCO Annual Meeting experience

“There is so much to learn about this disease, and ASCO is the ‘one-stop shop’ for all things related to cancer care. Here you will learn various aspects about cancer including new treatments, challenges in treatments, trends, prevention methods, disparities, integrative approaches, and more.” — Tiah Tomlin, My Style Matters

“I had a terrific experience at ASCO. Not only did I have the opportunity to hear about the latest scientific advances in oncology, I also discovered the wide-ranging efforts by a variety of stakeholders to improve the clinical trial process for patients—a crucially important piece of the puzzle in colorectal cancer. I look forward to going to ASCO again!” — Steve Schwarze, Colontown

“Listening to the research presentations gave me a greater insight that researchers are also passionate about meeting the challenge of cancer head on. I heard about promising advances, innovative treatments, unexpected results, and vigorous debates about treatment practices. I was also pleased to see that in the majority of the presentations, researchers thanked the patients and their families for participating. Regardless of whether you are a patient, patient advocate, oncologist, or researcher, we’re all working toward the same goal of conquering cancer.” — Cate Dobhran, Canadian Cancer Society

Patient advocates may register for the 2021 ASCO Annual Meeting for free. To register, patient advocates can send a bio-sketch or resume to patientadvocates@asco.org. Patients and survivors may also register for the 2021 ASCO Annual Meeting for free by sending an email to patientadvocates@asco.org and requesting a unique registration code.

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