My Five-Year Cancer Patient Advocacy Journey: Part 1

I have been an advanced lung cancer patient for eight years. Five years ago, I started my cancer advocacy. At the time, I had no idea what to do. I really wish those experienced activists would have shared some of their experiences with me.

Now I'm a veteran advocate myself and have good and not-so-good experiences. Today, I will cover my cancer advocate journey, and hopefully, you can draw lessons from my experience.

Understanding the distinctions between advocate types

First, cancer advocates are often distinguished as "patient advocates" and "patient research advocates." Patient advocacy regards any activity which ultimately benefits a patient. For example, a couple of roles of patient advocates are supporting newly diagnosed patients, fundraising, moderating social media sessions, etc.¹

According to NCI (National Cancer Institute), a patient research advocate is to "bring a human face to cancer research that reinforces the need to accelerate progress." Patient research advocates can assist in research design, review scientific proposals, etc. NCI has a comprehensive discussion about patient advocate and patient research advocacy.²

Becoming a patient advocate

I started patient advocacy first from my intuition in 2018 and devoted myself to three years. My experience and the lessons I learned are below.

One piece of advice I would share would be to find the right patient support groups and don't get discouraged. Before I started my cancer journey, I didn't know any lung cancer patients, and I approached a local cancer society, but they politely told me they couldn't help me. I then found a general cancer group where the cancer patients were depressed, and the group was not properly moderated. So, after two weeks, I left the group.

Although finding cancer groups didn't work out for me, I kept trying because I didn't want to be alone. Hope is around the corner.

Soon after, I found the first group that changed my perspective on lung cancer: ROS1ders. It's an online and closed group specified for patients with my genetic mutation, ROS1+ Lung cancer.

For the first time, I felt I was not alone. I joined the Canadian Lung Cancer Advocacy – Breathe Hope (I'm a Canadian), ALK Positive, and ROS1交流群 (Chinese ROS1 Patient Support Group) in the following years. In addition, I got to know many lung cancer patients nationally and internationally.

Finding the right cancer patient support groups opened my eyes and changed me.

It's easier to work with a partner

Although I was in several patient support groups, I wanted to have a local one, but how to find somebody with the same passion for lung cancer? At this time, I have known some lung cancer friends nationally and internationally, so through them, I got to see a lung cancer patient in my province. The rest is history.

Within a short time, we founded the local Manitoba Lung Cancer Support Group in 2019. More than ten patients joined, and we have had monthly meetings lasting over an hour each.

Working with a partner is better than working alone, and the partners become my special friends for later my endeavors.

Attend survivorship conferences

I attended the HOPE Summit 2019, organized by LunGevity Foundation. I met with many lung cancer patients, caregivers, and doctors. We instantly bonded. For the first time, I felt "like a duck to water."

Getting many cancer friends and attending survivorship conferences are crucial, but I lost many friends because lung cancer is still severe. Some of their passing has significantly impacted me, and I wish I had been prepared.

Keep balance and watch for burning out

I advocated as much as possible, almost to the point that I didn't refuse any advocacy chances. Examples would be:

• Talking to newly diagnosed patients
• Organizing cancer patient education evening
• Working as the editorship of a patient newsletter
• Talking to politicians about cancer patients' requests during the COVID-19 pandemic
• Sharing lung cancer stories on different occasions
• Fundraising, interviewing on TV for cancer advocacy
• Organizing and participating in national
• International cancer (lung) cancer conferences
• Regularly writing articles and moderating for cancer organizations
• Being a patient advisor involved in different drug companies

I got excited and full of energy for advocacy, but sometimes I was burned out. I'm talking about not only being physically exhausted but also mentally. After all, I'm a lung cancer patient, and keeping a balance is essential.

Finding fulfillment on my cancer journey

I experienced so much while doing patient advocacy. In my view, joining cancer patient support groups is essential. It makes me feel not alone; we encourage and inspire each other and exchange medical experiences.

I always encourage cancer patients to find suitable support groups. Other advocacy will come along.

I was happy with my patient advocacy, but I wasn't fulfilled. So, in the second part of this story, I'll write about how I finally found myself on the cancer journey.