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Nancy’s Lung Cancer Journey

No one is ever prepared to hear the words “You have cancer”. Even though (from asking for an x-ray that morphed into a CT scan) I knew there was a large tumor in the middle of my chest, I still wasn’t ready. And the pulmonologist was so kind in delivering the diagnosis. He went down the hall with the needle aspiration from my left clavicular lymph node and returned ½ hour later with a tri-fold paper towel on which he had drawn my lungs with the locations of the tumors – upper right lobe (T1), central lymph nodes of the mediastinal area (in total, about 2” x 5”), and one on the lymph node at my neck. And he said “You have small cell lung cancer (SCLC). There’s good news and bad news. The bad news is that it is extremely aggressive. The good news is that it is extremely responsive to treatment. If you are deemed to be “limited stage” (there are only 2 stages for SCLC – I call them good and bad), you have a 30% chance of long-term survival – a normal life.” In mid-August, I thought I’d be dead by Christmas. I spent about 2 minutes on the internet – what I saw was enough to tell me not to look further.

Doctors matter. A lot. I was treated at an NCI-designated Comprehensive Cancer Center by several exceptional doctors. What made them exceptional? Their listening and observational skills first and foremost, their dedication to staying current with research, and their caring. I was lucky – I didn’t have to search for them. These women – my primary care physician, my oncologist and my radiation oncologist kept me alive. They made me part of the 30%, even though my diagnosis said I was borderline extensive stage. It only took 5 months of chemotherapy (cisplatin and etoposide) and twice daily radiation during some of those 5 months, along with an episode of sepsis (broad-spectrum antibiotics, 2 blood transfusions, and a week in the hospital), to have me declared “No evidence of disease (NED)” by early December.

While my friends and family celebrated, I didn’t feel like celebrating. My life had been turned upside-down, I felt wrung-out and fatigued all the time, had lost so much weight that nothing fit, and had lost all my hair. And I knew that in January, I had to have 10 days of prophylactic whole brain radiation to kill any errant lung cancer cells (I was pretty sure it would make me stupid!) And that’s when my doctor prescribed an anti-depressant, which helped.

What did I do during this time – besides visit doctors and hospitals?  I walked – a lot. It was the easiest way for me to exercise, and my boxer was happy to help in that regard. I ate well – meaning lots of fruits and vegetables. And I meditated with guided CDs designed for cancer patients. And I kept up with my friends – often meeting one or more of them for lunch downtown. That not only passed the time but kept my spirits as up as they could be – a distraction if you will.

And when it was over, and I was deemed “cured”, I got angry. Angry that no one talked about the number one cancer killer. Through my doctor, I got in touch with the National Lung Cancer Partnership (now merged with the Lung Cancer Research Foundation), got involved in advocacy, and haven’t stopped. For me – it is healing to try to do something – anything – to prevent more people from going through what I went by raising awareness and research funding.

I have also learned that some treatments don’t let you forget that you had them. I had a CT scan every 90 days for the first 5 years after diagnosis. In the 4th year, they saw that my left ventricle was enlarged and referred me to cardiology for cardiomyopathy (heart failure). It was bad – so I went from surviving the #2 killer to facing the #1 killer! But with treatment from a cardiologist who specialized in heart failure from chemotherapy, I now have an implanted medical device, low-dose daily medication, and a nearly normal heart function. There’s also the foot neuropathy I’ve learned to live with (it’s not so bad) and some balance issues (likely from inner ear damage from cisplatin). But I’m alive!! Alive certainly beats the alternative.

Words of Advice from a Lung Cancer Survivor

Screen Shot 2015-10-22 at 5.16.16 AMWhen I was diagnosed with lung cancer, it was a shock. It was like a fist to the stomach- and it turned my life and my loved ones lives- upside down.

My world changed immediately and drastically. But I had to learn quickly not to let fear, shock, anger or distress keep me from advocating for myself.

I learned very quickly that you have to be your own champion.

So, how does a lung cancer survivor best advocate for themselves?

  • Never take no, or inaction (a form of “no”), as the final answer. Keep fighting. Your life is the most important to YOU! Don’t give up. If one doctor tells you to give up, find another. Keep fighting.
  • Research your doctor. What do others say about him? Where was he educated? Is he interested in research? Is he with a private practice or a university hospital?
  • Not all treatment facilities are created equally. The US News and World Report publishes a list of best hospitals every year. The National Cancer Institute designates certain hospitals that have been proven to deliver cutting-edge cancer treatments to patients. Other hospitals also deliver excellent services, but if you are uncomfortable with the treatment you are receiving, keep looking for a facility in which you have confidence.
  • You know your body best. If something doesn’t seem right, make sure your doctor knows. And takes it seriously.
  • Keep in mind that your oncologist works for you. If, at any moment you decide he is not doing an adequate job for you, fire him. You do not have to continue trusting your life to him if he loses your faith. Your medical team holds your life in their hands. Find the ones you trust completely.
  • Conduct your own research. Look at respected sites, such as LUNGevity, American Association for Cancer Research, Bonnie Addario Lung Cancer Foundation, American Cancer Society, American Lung Association, the National Institutes of Health (NIH), etc. Make sure that you can differentiate between opinion and vetted study results. If you are aware of what is out there, you can advocate for yourself. Unfortunately, not every doctor knows what all of the latest treatments are.
  • Start a binder or a file where you keep important test results and copies of your scans. List questions for your doctor so you don’t forget when you get into his or her office.
  • Take along a friend or family member to doctor visits. Two sets of ears are better than just one, especially if you receive some shocking news during the appointment.
  • Join support communities (in-person or online or both). It helps to spend time with others who “have been there, done that.”
  • One of the best organizations that I have associated with since my diagnosis is LUNGevity. It is dedicated to funding research for lung cancer and to providing HOPE to all lung cancer survivors. If you want to spend time with others who have lung cancer and exude HOPE, get involved with LUNGevity!
  • Spend time spreading the truth among your friends and acquaintances! Unlike what the general public, and unfortunately, even many doctors, believe, lung cancer doesn’t just happen to smokers. It doesn’t matter if you smoke or don’t, are white or black, male or female, young or old, skinny or fat. Lung cancer happens to people with lungs.
  • Try to maintain as normal a life as you can. Eat as healthily as possible. Drink plenty of water. Exercise as much as you are able. Smile, even if you don’t feel it. Watch happy movies and laugh. Cancer is an awful disease and none of us want it. But, it doesn’t have to consume your every thinking moment. And, it shouldn’t.

It is hard enough to be diagnosed with cancer. But, when you are diagnosed with lung cancer, it is a double whammy. The misconceptions and stigma that are associated with lung cancer can make people look down on you or discount the importance of your disease and your fight.

lung cancer survivor

Donna is now a stage 4 lung cancer survivor.

Keep your head up. Whether or not you have a smoking history, everyone deserves quality treatment and compassion. No one deserves to die from lung cancer; no one deserves to be looked down upon because of lung cancer. Set aside any feelings of shame or guilt or if you never smoked, the question “why me”.   Become a champion for yourself.  And remember, there is hope.

My story is a story of hope.

Yours can be too!