Tag Archive for: lung cancer patient

The Stigma of Lung Cancer

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Tori Tomalia is a stage IV lung cancer patient, avid patient advocate and a writer and blogger. You can find her at Lil Lytnin’ Strikes Lung Cancer 

In the spring of 2013, my biggest concern was juggling my time between grad school, work, and caring for my 4 year old son and 2 year old twin daughters. The nagging cough and increasing exhaustion were pushed to the back of my mind as mere side effects of trying to take on too much. As my breathing troubles increased, my doctor began treating me for asthma, but none of the half-dozen inhalers and pills seemed to make any difference. It wasn’t until a CT scan revealed an enormous mass in my left lung that the words “lung cancer” entered my vocabulary. By then, the cancer had spread throughout my bones and liver. At age 37, I was diagnosed with stage IV lung cancer. Inoperable, incurable. Terminal.

How could that be possible? I was never a smoker. Like all of us, I had heard over and over that smoking causes lung cancer, but sadly I have learned first-hand that the truth is much more nuanced. Smoking is bad for you, that is obvious and I doubt you could find a single American who hasn’t heard that yet. But so is living a sedentary lifestyle, so is eating junk food, so is having too much stress. It wasn’t until I received my horrible diagnosis that I learned there is one cancer where patients are blamed for their disease, and made to feel that they do not deserve a chance at a cure.

 

If you think I’m exaggerating, take a look at the numbers:

  • Lung cancer takes more lives than breast, prostate and colon cancers combined – it accounts for 27% of all cancer deaths.
  • Lung cancer is the second leading cause of all deaths in the US.
  • The federal government spends about $26,000 in research dollars for every breast cancer death. They spend less than $1,500 per lung cancer death.
  • 160,000 Americans will die of lung cancer this year. 80% will be never smokers or nonsmokers (people who once smoked but have quit).
  • Lung cancer in never smokers is the 6th leading cause of US cancer deaths.
  • Lung cancer kills almost two times as many women as breast cancer, and three times as many men as prostate cancer.

Lung cancer is the second leading cause of death in the USA! You would think funders would be tripping over each other trying to find better treatments and cures, but the bias against this disease is incredibly powerful, and it is costing people their lives.

Another sobering development is that the incidence of lung cancer in young, nonsmoking women is on the rise. Theories abound, but there is no consensus on what is driving this troubling trend. For me, the “why” is less important. What matters to me is more time with my family, and the only way that is going to happen is through research and more treatments for lung cancer.

November is Lung Cancer Awareness Month, and what I ask of you is to simply become aware. Become aware of this disease that is a threat to every person with lungs. Become aware of the precious nature of each breath you have the joy of taking. Become aware of the challenges facing people with this disease. Become aware that no one deserves this.

And if you still feel that the people of all stripes with lung cancer are not worthy of your compassion, well there’s this old story I heard about throwing stones….

Surviving Lung Cancer

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(Editor’s note: Randy Broad is a 7 year lung cancer patient, avid lung cancer patient advocate, and Secretary of the Patient Empowerment Network Board of Directors. He is a former international business executive and author of the book, It’s an Extraordinary Life – Don’t Miss It.)

At 52 years of age, Randy Broad was diagnosed with non-small cell lung cancer. There was no history of lung cancer in his family. He had no idea of what the disease was. He was recommended to an oncologist, but realized pretty quickly that this oncologist was not for him. Randy did some research and, as he says, ‘got really lucky’ and found Dr. Renato Martins at Seattle Cancer Care Alliance. Randy knew right away that Dr. Martins was the right doctor for him.

Dr. Martins enrolled Randy in a clinical trial, telling him that a trial was ‘tomorrow’s drug today’. That’s all that Randy needed to hear. Eight years later, Randy is living well and telling his story to countless other lung cancer patients world-wide.

In honor of Lung Cancer Awareness Month, I interviewed Randy to ask him about how he is living and coping with the history of a lung cancer diagnosis. Below are his thoughts.

Joan: How did you deal with the initial diagnosis of lung cancer?

Randy: All I could think about was my kids. That they would grow up without a dad. As soon as I was diagnosed, I had to text my kids and tell them that I loved them. I had to figure out what it was all about and what really mattered to me. I went to the local oncologist and was told that I had 2 years to live. I thought, how does he know? How can he say that without even knowing me? I just knew that I had to shop for another doctor. This is a life and death decision. Then I stumbled upon Dr. Martins at Seattle Cancer Care Alliance and I knew that he was the doctor for me. He advised me to enroll in a clinical trial and I trusted him and did just that.

Joan: Knowing what you know now, what would you have done differently?

Randy: Back then, some of the resources weren’t available like they are now. I didn’t really know how to search for a good doctor. Now I really think that the best way to find a doctor is through a pharmaceutical representative. They know all the doctors at all the hospitals. They know which doctor is doing what research and who is most knowledgeable about drugs and clinical trials.

Joan: What would you tell a newly diagnosed lung cancer patient?

Randy: Take someone with you to every doctors appointment. Take notes, talk it over with someone else, because really, you will only take in about half of what the doctor says. You really need someone there with you. Get a good doctor that you can relate to – a specialist for your condition. And even if you really like your doctor, get a second if not a third opinion.

Joan: How do you stay healthy today physically and mentally, knowing that you have survived a serious illness?

Randy: You have to live your life. Do what you love. Focus on what matters and not on what doesn’t. Assess what you want out of the rest of your life. A cancer diagnosis puts life into perspective. Take time to enjoy. Personally, I started writing. First I wrote a blog and got my thoughts down every day. This was cathartic for me and really helped me. It also helped me keep in touch with family and friends who were interested in how I was doing. A blog was a way to communicate my story to all of them. Then I started writing a little more philosophically and my blog turned into a book! Writing this book was a great experience. I wrote favorite stories about my life so that my children could read them and know about my past experiences.

As far as exercise goes, I did yoga and meditated during the time I was getting chemo. Now, I ride my bike and walk. I only really have half a lung that works, so stairs are difficult for me. I have always eaten well. I like to cook and eat healthy. People used to send me information about diet plans. I’d receive about a diet a day: melon diet, this diet, that diet. What I do is I eat in moderation. If I want to eat a steak, I eat it. I enjoy it. I really try and live each day and enjoy what I have.

Joan: Any last thought as a 7 year lung cancer survivor?

Randy: As lung cancer patients, we don’t think about the destination, but live life in moments. When lung cancer patients share their stories, you will hear, ‘I just want to see my daughter get married’, or ‘I just want to see my grandson take his first step.’ I have seen my daughter go through high school, graduate from college, fall in love and now she lives with her boyfriend and they just got a dog together. My life is now measured by milestones that I will always remember.

 

“The greater the obstacle, the more glory in overcoming it” Moliere