Cancer Happens

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In the world of cancer there is a constant effort to declare each cancer the worst (or occasionally, the best). All cancer is a life changing proposition. Perhaps no diagnosis bodes the double whammy of dire odds and dire judgement as does Lung Cancer. Of course, you somehow brought on the horror. The first question lung cancer folks field is, “Did you smoke?” If only we can pin the blame on them.

Anyone daring to live in a catastrophically polluted city in China in 2013 is similarly at full blame for whatever happens next. Right?

Below one young husband shares what he has learned since his fit and compelling wife, my friend Kim,  got delivered a stage iv lung cancer diagnosis at age 34. Sometimes being alive in this world is enough to give you lung cancer. They also are both big fans of Consano, https://www.consano.org/about/how-it-works, a way to crowd fund medical research.

An Intimate Awareness of Lung Cancer

Author: Spencer Williams
Nov 14, 2013

My grandfather, his fingers yellowed by tobacco from smoking unfiltered Pall Mall cigarettes for more than 50 years, died from a combination of prostate cancer, emphysema, and alcoholism.  He didn’t have lung cancer, but if you pay attention to all of the anti-smoking ads, then you’d think he should have or at least only people like him – old folks who smoked a lot of cigarettes for a lot of years.

I believed the ads. I believed that smokers got lung cancer. I held that belief up until the day my wife was diagnosed with lung cancer. Kim was diagnosed in May 2011. She was 34 and until a few months earlier had been very active and healthy. She ran regularly and ate well. We rock climbed, kayaked, camped, and rode our bikes to the bar in good weather. She wasn’t a smoker. She told me she had a cigarette at her bachelorette party in 2007 and smoked the occasional cigarette at parties in college.  All of that was years before and all of her doctors now classify her as a non-smoker.

So how did Kim end up with lung cancer? Was it her little bit of smoking in college or maybe it was exposure to radon. I don’t know. She doesn’t know. The doctors don’t know and ultimately, once Kim was diagnosed with lung cancer, the how started to matter much less.

Most people, like my wife, don’t discover they have lung cancer until they are overly symptomatic and other illnesses have been ruled out.  By the time Kim had had a cough for a month with difficulty breathing, then lost her voice, and then started coughing up blood, almost 6 weeks had passed.  A tumor the size of golf ball had collapsed the upper lobe of her left lung.

At 34 years old, without obvious risks factors, other causes got ruled out first: allergies, asthma, bronchitis, pneumonia, tuberculosis all came back negative until she started coughing up blood. Coughing up blood is bad. We were scared. Coughing up blood is what happens in movies just before someone dies. That was two and a half years ago.  After it was determined that Kim’s cancer was non-small cell lung cancer, adenocarcinoma, a treatment plan was determined and begun.

As kids under the age of 40, our limited experience was with younger breast cancer “survivors” who endured their treatment, were in remission or NED (no evidence of disease), and living their lives.  Kim was strong and just as young as those women, and if she could endure her prescribed 8-weeks of chest radiation with concurrent chemotherapy, then she and I would get back to living our lives.

According to the post-treatment scans, the chemo and radiation appeared to work in their targeted areas. Unfortunately, the lungs are the “main bus terminal” for the body and her lung cancer decided to metastasize and took a ride down to her right adrenal gland.  Kim has been in treatment ever since and we became really aware of lung cancer.

We are aware that lung cancer is so deadly due to the fact that there aren’t any easy tests for detection – no self-exams, no PSA screenings. What we discovered is that lung cancer doesn’t just happen to old, long-time, multiple packs per day smokers. We learned it happened to us and was going to continue to happen to us. We learned lung cancer kills almost 160,000 Americans a year. We found out lung cancer kills more people per year than breast, prostate and colon cancers combined. It kills almost twice as many women as breast cancer and three times as many men as prostate cancer.

And then we learned about genetic testing and targeted therapies. We were told Kim’s cancer had a specific mutation called an ALK rearrangement and a targeted therapy had been fast-tracked for approval by the FDA, Crizotinib, and Kim would be the first patient on it at her treatment center.

I was the internet researcher for information about adenocarcinoma in those first six months so Kim wouldn’t have to read the discouraging statistics about lung cancer. Facts like the 5-year survival rate for lung cancer is 16%. That rate hasn’t really improved in the last 40 years. I also found out only 4-5% of lung cancer patients have the ALK rearrangement that Kim has.

I looked into why a drug like Crizotinib would get fast-tracked by the FDA. I was astonished at what I learned. Most traditional chemotherapies are considered successful if 10-20% of patients respond positively to them. In clinical trial, Crizotinib, had a 65% positive response rate in patients for an average of 10 months without the heavy side-effects of traditional chemo. Kim just passed two years on Crizotinib on October 4.

Knowing a “cure” is unlikely for Kim’s cancer, her goal is to always be at least two-steps behind the medicine. And there are now second-line therapies to Crizotinib in trial. The research in this area of treatment shows great promise along with targeted immunotherapies that are also in trial.

Kim and I have an intimate awareness of lung cancer. Now we need lung cancer awareness to reach an audience larger than patients, their caregivers, their friends and their families. We need people to understand that if you breathe, you’re at risk for lung cancer. We also need to change the stigma of lung cancer being a smoker’s cancer.  Almost 18% of new lung cancer cases will be never smokers and 61% will be former smokers. So please, if you ever meet a lung cancer patient, don’t have your first question to them be, “Were you a smoker?” Instead ask them how you can help.

If you’d like to learn more about Kim’s ongoing journey, she blogs her experiences at aquariusvscancer.com.

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About marcy westerling

I am a long time community organizer with a passion for justice and founded the Rural Organizing Project in 1992. Derailed by a Stage IV Ovarian Cancer diagnosis in spring 2010, I have stayed in treatment since then. I am learning how to embrace livingly dying and hope that by starting a Phase One immunology clinical trial at UPenn in spring of 2013 I will have more time to find the sweet spots of thriving while terminally ill.

6 responses »

  1. Marcy, thank you for sharing this. So much about cancer that we don’t know. My dad was one of those Pell Mall smokers who did end up with lung cancer, but of course, we always hear about second hand smoke causing lung cancer, as well. Now this. It seems no one is immune to cancer, and each of us needs to live our lives like to the fullest every day we have.

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  3. I am so happy for Kim. And I’m jealous because my best friend died yesterday from lung cancer. She was diagnosed in March. Yes, she was a smoker until 10 years ago. So no one will blame R.J. Reynolds. They will say it was her own fault (she would say that, too). But I’m a former smoker and I know how hard it is to quit — harder than quitting heroin. My nephew continues to smoke despite seeing my friend lying in a hospital bed in her living room, hooked up to an oxygen tank, dying. He wants to quit, but hasn’t been successful. I hope someday soon.

    Bless you, Kim. I hope you stay one step ahead of the disease as new treatments are developed. Is there any hope to detoxify our environment?

  4. Thanks, Marcy…My dad died of lung cancer 30 years after he stopped smoking. Still, even had he smoked until the last moment while on oxygen, suffering is suffering and he was worthy of respectful care.

    I’ve had cancer in my lung for over 14 years, but because it’s breast cancer, it’s somewhat controlled.

    We all breathe the air, drink the water, eat the food. Toxins and health swirl through us – kicking up debris then clearing it again.

    We’re all just doing the best we can with what we’ve got!

    Here’s a related story that might interest Kim and Spencer:
    http://articles.chicagotribune.com/2013-11-26/news/ct-lung-cancer-met-1126-20131126_1_lungevity-foundation-lung-cancer-awareness-month-the-national-cancer-institute

    Marcy, grateful for you!

    May we all be healed,
    Stephanie S.
    http://www.mylifeline.org/stephaniesugars

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