Lung cancer survivor: What I learned during treatment
September 30, 2015 | by Emily Taylor
Emily Taylor was 28 years old and about to celebrate two years of marriage with Miles, her college sweetheart, when a wheeze brought her to a doctor's office. A former athlete who had never smoked, Taylor was stunned when a scan revealed she had Stage 4 lung cancer. She shared the story of her treatment, and its end, in an earlier Breakthroughs post.
Here, in an excerpt from her speech at the 16th World Conference on Lung Cancer in Denver in September 2015, Taylor describes how she almost missed being diagnosed, and how the treatment she received at City of Hope led her to remission – and, soon, a new adventure that lung cancer could not and will not take away.
Over the next few days, most of you will be focusing on the technical and scientific side of lung cancer. Right now I am here to highlight a different perspective, that of the patient, one that, for me, started three years ago with a slight wheeze.
That wheeze turned into a cough. I saw a doctor, and was reassured it was allergies and given an inhaler. The inhaler seemed to help at times, but not at others. Frustrated, I went to a pulmonologist. After a battery of further tests, I received confirmation that I indeed had asthma, "no question." Despite the doctor’s certainty, I requested a chest X-ray. Why? Only three weeks earlier, over a dinner with friends, I had been told about a Jill’s Legacy event, which honored Jill Costello – a collegiate athlete at Cal Berkeley who had passed away from lung cancer at age 22. Her story had jolted me, and for the first time I learned that anyone could get lung cancer.
I was 28 years old. A newlywed. A manager at an international financial firm. I was a former college athlete and state track champion. Just a week earlier I had hiked 13 miles in the mountains. I had never smoked a cigarette in my life. How could I possibly have lung cancer?
My husband and I started by reaching out to family and friends, and called nearby university cancer centers. We were fortunate to be put in contact with the Bonnie J. Addario Lung Cancer Foundation, the ALCF, who quickly assisted us in getting on the right path. Within days I had my first appointment with Dr. Karen Reckamp, a thoracic oncologist at City of Hope.
The primary thing I said to Dr. Reckamp was that I'm not her typical patient. I'm not 72. I've never smoked. I'm 28 and I have a full life ahead of me. I want a doctor who believes in me and is willing to go outside the box. I found exactly this with Dr. Reckamp.... [EXCERPTED]
Important advice – and requests – for cancer doctors
That seems like a long time ago now. I’ve been off treatment for the past 2.5 years. I have had clean scans every three to six months, remaining N.E.D. (or what I call NED - No Evidence of Disease). There are many ways my life has changed. It may not be normal, but I have a new normal. Often times I even forget that I only have one lung. I laugh and celebrate all the little things in life. I do not take them for granted because they are what I fought for. And as for my life overall, I am alive, and that is the best quality of life imaginable.
I’d like to leave you with a few final items:
First, my story is not unique. Every patient has a story.
We need all of you – we need your brilliant minds, and we need your relentless research to identify our genetic mutations and to provide us with long-lasting, effective treatments. Please remember that we are more than a mere sample in your lab, more than just one of many patients walking through your office each day. And while our biopsies may all be slightly different, we have one resounding similarity: We want to live.
So I beg of you to fight outside the box for your patients and be willing to stretch the “standard of care”. Do not evaluate your patients based simply on the stage of the disease, but factor in strength, will, determination. Factors that are not found on any of the forms, or in any of the tests. Listen to your patients and learn how aggressive they are willing to go. I hope you will push the envelope for them, knowing that each patient has a story and a family and a life that they desperately want to return to.
Second, anyone with lungs is at risk for lung cancer.
Pulmonologists, please test young adults earlier. Don’t ignore symptoms due to age or perceived health. Advocates, please share the word: young adult lung cancer is on the rise. It makes a difference – a Jill’s Legacy advocacy event saved my life just because someone shared her story. Oncologists, have your young patients contact the ALCF regarding their new study, "Genomics of Young Lung Cancer." The study, presented Tuesday by Dr. [Barbara] Gitlitz at Session 22, is remote-access and is looking for patients from around the world, with the purpose of determining a common bond and possible targeted treatments for young lung cancer patients like me.
The best outcome yet – motherhood
Third, shortly after my diagnosis, I was given the sound advice to undergo fertility treatment, and my husband and I preserved nine embryos.
I recently learned during a radio interview with the organization Stupid Cancer that only 14% of oncologists bring up reproductive rights with young adult cancer patients. This means, sadly, many lose the opportunity to become biological parents. For me, my embryos were a beacon of hope throughout my treatment. When hope wore thin, they inspired me to fight harder. Please, help make this hope possible for your patients as well.
And lastly, we all are here today because we fight lung cancer, and because we hate what it takes away. As a patient advocate and spokesperson for the ALCF, I see all too often how devastating this disease can be. It can take away life’s most precious moments. But by being here all of us are fighting back and getting back those moments. It is because of my aggressive care team that I am able to share that just a few days ago, my husband and I received the news that our surrogate is pregnant.
I will be a mother and lung cancer could not and will not take that away.
On behalf of all patients, thank you for helping us get to moments like these. Thank you for helping us fight. You, all of you, are our hope.