Lung Cancer: Advice That Helps, Advice That Hurts

By Diane Miller, as told to Stephanie Watson

Until Jan. 14, 2021, if you’d asked me to describe myself, I would have said, “I’m a wife and mother.” After that day, I added “cancer survivor” to my title.

At first, I attributed the back and foot pain I was having in late 2020 to over-exercise. But when several rounds of physical therapy didn’t relieve the pain, I went to an orthopedic surgeon, who sent me for an MRI. I expected arthritis, or maybe a herniated disk. I never imagined that I might have cancer.

Thankfully, an oncology office happened to be in the same building as my orthopedic surgeon. They saw me right away. I was overwhelmed and could barely talk because I was crying so hard. The nurse who took my vital signs gently consoled me and said, “We see miracles here.” I immediately felt relief, and I will never forget that moment. 

Danny Nguyen, MD, a medical oncologist and hematologist at City of Hope Orange County, confirmed my diagnosis – stage IV B non-small-cell lung cancer. I was terrified. I didn’t know how to deal with it. I wondered, “Am I going to live?”

I needed support, reassurance, and advice. While I did get plenty of advice, not all of it was helpful.

Unhelpful Advice

Everyone who offered advice was well-meaning. Friends and family genuinely wanted to help me. Sometimes their suggestions were just what I needed to hear. In other cases, they only confused me more. Occasionally, their words hurt.

The absolute worst thing anyone said to me after learning about my diagnosis was, “You don’t look like a smoker!” My emotions were already so raw. I just cried. It’s nobody’s fault that they got lung cancer. Nobody deserves cancer of any kind. We need to get rid of that stigma.

When I was first diagnosed, my head was spinning. I was confused. So much new information was being thrown at me, and I was trying to learn everything I could about my disease. It’s like learning a new language. 

People sent me the craziest diet plans to beat cancer. One diet told me to stop eating sugar. Another claimed it was possible to “starve” cancer. Some friends told me to take a ton of supplements. Others suggested that I read this book or that book. The more information people sent me, the more confused I became. I was so confused that I had no idea what to eat.

I didn’t want to seem unappreciative or rude when people offered advice, so I just said, “Thank you. I’ll look into that.” What I really wanted to say was, “You know what? I’m OK. I’ve got fantastic doctors and great care. Please just be my friend at this point.”

Also unhelpful was the advice I got on how to respond to my cancer. Everyone has their own way of dealing emotionally with a serious diagnosis. I was overwhelmed by emotions I’d never felt before, and it took time for me to sort them out.

Good Advice

What I needed more than anything after my diagnosis was support, love, and the reassurance that I was receiving the best care available. It meant a lot for me to hear the words, “Diane, you can do this. You’re strong enough.” 

Probably the best advice I got was from my sister. She’s a nurse, so I expected her to give me all kinds of medical advice, but she didn’t. Instead, she told me that my feelings were perfectly normal – that crying every day was perfectly normal. She let me do what I needed to do, and she was just there for me. She would bring me a treat or sit with me on the phone and allow me to go through the emotions.

The best advice on how to process and deal with a diagnosis came from the cancer community – people who had been there and done it before, and professionals who work with cancer patients. The first time I met a fellow survivor was like a stroke of lightning. I thought, “Hey! I’m not alone.” 

I received treatment from Ravi Salgia, MD, PhD, a renowned thoracic oncologist and lung cancer researcher at City of Hope. Because they only treat cancer, they knew what I needed as soon as I got there. They knew what to say and gave me my first thread of hope. 

Dr. Salgia told me, “This is not a death sentence for you. There are treatments. This is not your parents’ cancer.” His words gave me a huge sense of relief. I felt like I had a whole team on my side who believed in me. I knew they had the treatments, the tools, and the experience to manage my cancer.

The counselors I met with helped validate my feelings and let me know that I’m not crazy. Because honestly, I felt like I was losing my mind. Nothing felt normal. They reassured me that I am perfectly normal. Then they explained the process to me and let me know what to expect from my diagnosis and the emotions that come with it. That was tremendously helpful.

The best thing my friends and family did for me was to love and support me by showing up, making a phone call, coming by to visit, or taking me to lunch. Because particularly in the beginning, nothing felt normal. It was like being in the middle of the ocean with no edge to grab onto. I felt like I was dog paddling, just trying to find some sense of normalcy. Friends and family brought that normalcy back to my life. Honestly, without their support, I don’t think I would have made it. 

Getting My Life Back on Track

Tests revealed that I have an EGFR mutation, which, fortunately, is treatable with targeted medication. I’m so grateful for my oncologist and care team. Thanks to them, I went from feeling like I could barely walk to having a pretty normal life today.

What really put my life back on track was doing advocacy work in my community for The White Ribbon Project, an organization that promotes awareness and is trying to end the stigma surrounding lung cancer. We want everyone to know that anyone with lungs can get this disease. Their advocacy community has hosted events across the nation in which they build large white ribbons out of plywood. 

To be able to give back by doing something about this horrible disease that I have no control over has been a gift. It’s healing me

(Photo Credit: DigitalVision/Getty Images)

SOURCE:

Diane Miller, lung cancer advocate, Orange County, CA.

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