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Cancer, Patient Care

"As a young lung cancer patient, I had to find my own path": Fighting stage IV with full force

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s bonus column comes from patient advocate Emily Bennett Taylor.

When I was diagnosed at age 28 with stage IV lung cancer (yes, you read that right: 28. Non-smoker, college athlete, lung cancer), I wanted to shout it from the rooftops. No, not in the joyous, “share-my-news” type of way. The concept was so unfathomable that I sometimes felt the only way it would really sink in is if I screamed it out loud in public. I didn’t, of course. While many social norms, like dressing to leave the house or even showering, went completely out the window as I underwent treatment, I’m happy to report that I managed to maintain at least a semblance of sanity in public. And I’ve thankfully found better venues – such as this article – to share my story.

I learned very quickly that as a young lung cancer patient, I had to find my own path. In a cancer normally associated with older smokers, I was constantly telling my doctors: “I’m different. I’m strong. I want to be as aggressive as possible.” Standard of care is to treat stage IV patients palliatively, but that didn’t sit well with me – I wanted a cure. I was told “no” to surgery countless times. I kept seeking second, third, multitudes of opinions in order to find a doctor who would see me as the young, strong person I was with my whole life ahead of me.

While I tested negative for all known genetic mutations (I know one is out there – please find it for me!), I was fortunate to be part of a small percentage of patients who respond to traditional chemotherapy. After six rounds of carboplatin, Alimta and Avastin, and two additional infusions of Avastin, I found my white knight in Raja Flores, MD, of Mount Sinai Hospital. My husband and I relocated from our home in California to New York City for three months, and on February 8, 2013, Dr. Flores removed my entire right lung, pleura, half my diaphragm, all mediastinal lymph nodes, and the pericardial sac (around my heart), which he rebuilt with Gore-Tex.

Three weeks into my recovery, I began a follow-up course of 28 rounds of high-dose radiation to my right lung cavity. If there were any cancer cells left, Dr. Flores and I intended to fry them into oblivion – even if side effects had me vomiting and nauseated for the better part of six weeks, and exhausted for another six months.

My reward? Dr. Flores declared me N.E.D. – No Evidence of Disease. I’ve lived with that diagnosis for almost a year and a half now, and it feels fantastic.

Is life with one lung difficult? Sometimes. But the most important thing to me is that it’s still life. Lots of surgeons told me “no” because they believed removing a lung would diminish my “quality of life.” For me, losing a lung meant gaining my life, and that’s a trade-off I think any patient would make if given the choice.

If you’re a medical student looking for an area where you can make a serious impact, consider lung cancer. In the past few decades, survival rates for other major cancers (breast, prostate, colon) have increased to well above 50 percent, some reaching the upper 90s. Lung cancer, the nation’s No. 1 cancer killer? A dismal 16.8 percent.

This is a field ripe for advancement. We need researchers developing better treatments and methods of early detection. We need doctors who both understand that the face of lung cancer is changing and are also willing to push the envelope with their patients to find an individualized, aggressive cure.

Every lung cancer is different, and every patient deserves a treatment plan with the goal of preserving life. You can be the difference. You can make an impact. And you can change the course of someone’s life, just like Dr. Flores did for me.

Emily Bennett Taylor, a former state track champion, college volleyball player, and finance manager, is now a Stage IV lung cancer survivor and spokesperson/patient advocate for the Bonnie J. Addario Lung Cancer Foundation. Her story has been highlighted on the Steve Harvey Show, the Atlantic Monthly, and on her blog – embenkickscancer.wordpress.com – named to Healthline’s Top Lung Cancer Blogs in 2013 and 2014.  She writes candidly about her treatment and life with one lung, as she works to raise awareness about the leading cancer killer.  Emily lives in Southern California with her husband Miles and their two lovable mutts, Ginny & Tonic.

11 Responses to “ "As a young lung cancer patient, I had to find my own path": Fighting stage IV with full force ”

  1. Emily "EmTay" Taylor Says:

    Particularly as a Stanford alum, I couldn’t be more proud to see my sister-in-law featured on this site telling her story to help raise awareness regarding the nation’s #1 cancer killer. It truly can happen to any of us and we need to work together to eradicate the disease.

  2. Kassy Perry Says:

    I am grateful to have had the opportunity to watch this amazing woman find her voice in the advocacy world. Emily is gifted in so many ways, and will do so much to educate the medical community and patients about lung cancer. She is leading the way in the search for better understanding of the disease with her work with another amazing woman Bonnie J Addario and the Bonnie J Addario Lung Cancer Foundation.

    She is exactly what the health advocacy world needs. Go Emily!

  3. Wanda Rabon Says:

    Thank you for sharing God surly must have a plan
    for you. My husband Larry has lung cancer but in remission. The radiation really damaged his lungs.He is on oxygen all the time.

    God Bless

  4. Sabrina Braillard Says:

    Thank you for your story. Im a newly diagnosed 46 year old woman, who absolutely believes that this can be cured.. so thank you for the extra dose of hope…. what an amazing story and person you are…thank you

  5. RickStrong Says:

    No matter how many times I read your story Emily, it moves me to tears. I’m approaching a year on Tarceva with only minor set backs so far. I’ll always be cheering on our inspiring #1 advocate and look forward to the day that this disease gets treated as a chronic illness and ultimately for a cure.
    Keep fighting and stay strong…for yourself, for me, and for all of us. Our voices from the rooftops will be heard!!!

  6. Mara Tripi Says:

    Emily…is changing the way Stage 4 lung cancer (and all lung cancer) is perceived…..Great job,Emily…once again…getting the word out there!….

    You are a driving force!

  7. Mischelle Martin Says:

    Emily, you are a hero and an inspiration. I have been living with Stage 4 lung cancer for a year and a half post diagnosis. I believe that positive thinking is paramount to the success of treatment. Keep going, Emily! We are on the road that leads to long-term survival and eventually to a cure. I want to be one, and I fully expect YOU to be one of those pioneers.

  8. Lucille V.Larivee Says:

    Emily, I am so proud of you for the positive outlook you had in attacking this horrible disease. I am also a survivor of stage IV adenocarcinoma with mets to my esophagus. I was truly lucky in the fact that I was able to find doctors that wanted to treat me very aggressively & didn’t have to waste time looking for someone that would. I was 43 at the time & had been very healthy so why not. I had radiation for my esophagus with chemo for both. The day I had my surgery my doctor said he still wasn’t sure if it would be a lobectomy or pneumonectomy but “would do what was best for me”. Well, he did take my whole lung & that was 23 years & 8 months ago & it was the best thing he ever did. As you’ve said life with 1 lung is difficult but I thank God for every day that I’m still here & pray for others that are going threw the same thing.

  9. Tomma Hargraves Says:

    I am a stage 3/B non small cell lung cancer survivor….almost 8 years now. I participated in a very aggressive clinical trial at UNC-Chapel Hill. I did have a mutation. While I am not as young as this writer, I, too,was healthy and had to become my own advocate to find the best treatment. Sometimes I think it’s a crap shoot…being in the right place at the right time. I do wish folks would pay more attention to ALL of us with LC… I know the story of young folks may be more interesting… but the fight is the same for all of us… better treatments mean better funding…we need that.

  10. Mari Says:

    You are such an inspiration to me. I too am stage I’ve and have been told non operable. I am ros1 mutation in which the majority of my disease has responded with xalkori. I have one stubborn Hilar node and an anterior mediastinal node that they want to maybe target with radiation. I’m nervous and still looking for a cure as well!! I totally feel good work two jobs but am told stage iv. I need next steps. Thank you for reminding me there is hope! It’s been over a year now for me! Together we all pray and find hope for cures

  11. Stephanie Says:

    Always great to hear your story, Emily! Keep fighting the good fight and bringing those talented med school souls over to the world of lung cancer. We need brilliant minds to add to the already great work being done!

    Med students- Join the fight! Help keep my Stage 1B husband alive and all his LC friends!

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