Stigma, Genetics and Hope: 11 Years with Lung Cancer

In 2005, Melissa Crouse was diagnosed with lung cancer and given three to five years to live. Eleven years later, Melissa continues to manage her disease while giving back to the lung cancer community and getting the most out of life. Below Melissa shares her perspective on living with lung cancer, understanding the importance of biomarkers, and remaining hopeful.

What has been your journey with lung cancer, so far?

Melissa:  I was originally diagnosed in 2005, when doctors found the lung cancer accidentally – I was given a chest x-ray when I had an upper respiratory infection, and they were surprised to find a tumor in my upper left lobe. Following my initial diagnosis, I had a surgery, one course of treatment and lived disease free for three and a half years. In 2009, I had a routine follow-up scan and learned that the cancer had spread to my liver. Since then, I have been on countless treatments and have participated in clinical trials. About 18 months ago I retired from a lifelong teaching career as it became too difficult to manage my disease while working.

What was your initial reaction to your lung cancer diagnosis and has it changed over time? 

Melissa: I was shocked. The very first thing I said was, “How can I have lung cancer? I never smoked!” As I became more involved in the patient community and spoke to my doctor, I quickly became more educated. My entire perspective has changed, and now I’m working to eliminate the stigma that only smoking causes lung cancer, because I know that many people must believe the same thing.

Were you tested for genetic mutations? 

Melissa: Yes, I was very lucky, because my doctors talked to me about genetic mutations at diagnosis and recommended testing my tumor. When I was diagnosed 11 years ago it was a time when there were only a few known mutations – today scientists have been able to identify a lot more. Initially, I tested negative for all known mutations. After a couple of years, my tumor was retested, and a mutation was identified. In the years since I have been retested, as my lung cancer has progressed, to identify any further changes.

What is your perspective on genetic testing for lung cancer mutations as a result of your experience?

Melissa: I have learned that genetic mutations have been found to play a role in driving certain types of lung cancer and that there are many different genetic mutations still being discovered. While I did not have to ask for my tumor to be tested, that’s not the case for a lot of patients. My oncologist explained to me that he believes the key to treatment is to identify mutations in order to most effectively treat the disease with targeted therapy whenever possible.


Melissa stays active by partnering with advocacy groups such as LUNGevity

Where do you find strength as you face living with stage four lung cancer? 

Melissa: I find strength by accepting my situation. When I was diagnosed, I felt like I’d been blindsided. I went through denial, anger and grief, but now I’ve come to accept it. I don’t make cancer the focus of my life – it’s just a nuisance. I don’t allow myself to get sucked into thinking, “poor me,” though I do have days when I really don’t feel well. But my mindset is not focused on cancer. 

I derive strength by staying active and participating in activities I enjoy. Recently I was interviewed by my local paper to speak about my experience living and supporting others with lung cancer during Lung Cancer Awareness Month. I’ve also established a support group in my area, and I’m active on a national level with advocacy groups – for example, I’m a member of LUNGevity’s Survivor Advocacy Committee. Since accepting my diagnosis I’ve focused my energy on trying to help others.

 

What advice would you give to those newly diagnosed?

Melissa: My advice is to not lose hope. There’s always hope. Know that research is exploding and the scientific community is continuously making progress.

Also, don’t listen to the statistics – because according to the statistics, I wouldn’t be here today.

What is one thing you want everyone to understand about lung cancer? 

Melissa: Anybody can get lung cancer. It’s very important that the stigma that only smoking causes lung cancer is eliminated from the conversation. It’s not just a smoker’s disease. I was healthy: I taught skiing, I went to the gym, I ate healthy – and I’m not alone. There are many people who live very healthy lifestyles who get slapped with a lung cancer diagnosis. 

Also, many lung cancer patients are often asked if they smoked. It’s a hard question to hear, and it’s hard for many to answer. I recommend taking a breath, and using it as a teachable moment to educate about how lung cancer can affect anyone.

 

Melissa is a member of LUNGevity’s survivor advocacy committee. LUNGevity provides a community of empowerment, support, and hope as well as more than 80 grassroots awareness and fundraising events held from coast to coast each year.