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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.

13 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!

  12. cari Says:

    Emily, I too was diagnosed stage IV NSCLC in 2010. I went for several consults and oddly all were willing to do surgery on me. The difference was which procedure, after 2 conflicting consults I searched for a 3rd opinion and my miracle also was Dr. Raja Flores. I had the left side of my lung removed in Jan 2011. I am older than you and also an ex-smoker, gave it up 4 years before diagnoses. I have since had one recurrence but I also had mets to the brain that I have radiation to each time they crop up.
    Lung cancer doesn’t receive the kind of funding that other cancers do. We need to shout out loud to be heard. Lung cancer is the deadliest and deserves to be recognized as such.
    Keep shouting it as I do.

  13. R. Jude Dion Says:

    I am seeking hope and glad to see you can fight. I survived a 15 meter fall onto hars surface should have killed me over a decade ago. Broke my entire right side. Leg; bag; pelvis back(I was back to working high iron in 3 months)…rib and back pain forced retirement been waiting for third attempt for pain and was giving myself a hair cut and felt lymph node or start of cyst went to family doctor and he though cyst tried opening it. But since it was my posterior cervical lymph node. Said probably a virus too soft too moveable so NO WAY DID MY 47 year old body have cancer. Well it did not go away and grew. So he rxed a bad badantibiotic and had me do lung xray. I got compared to ones from year ago so wheb Doctor called….I said give me the bad news is it bad or bad bad…he said bad bad bad….cancer and it has spread. So Ct scan former brother in law (a heart surgeon) I told I had ct thankfully looked as let me know in early am news wasn’t good so I wasn’t spending hours dreading call. Then saw oncologist…awesome eastern European… He asked in accent “what Mack truck smashed into you?”. I said you notices healed and unhealed rib fractures…. He said ” you no have rib fractures they are still shattered ane sternum dislocated….how do you sit let alone stand….I said via slow released morphine and been waiting on pain pump. Well thats is done and can finally settle decade old comp case but must keep secret. Hit home when I saw it on paper Stage IV 5cn suncarinal- fork trachea involved no aurgery liver looks clear but right adrenal gland cancer with what we know Now 1O months average…I am tough no symptoms other than neck. Had CT of Neck and Pet scan says to biopsy lymph node on neck… I hope the take whole thing. I know palliative is not giving up but not a word a want. U survived 45 foot fall so my son would have a Dad (that was what kept me going in flight for life) and didn’t want parents to bury another sun. He is 22…they are gone. It all been bonus time. I am going to see if I was saved from death the first four times…my middle name is Jude hopelese cases. I have confidence in my doctors but as a recovering Drunk who coke to drink more…I have been sober almost 5 years and I have been a safety instructor soaybe my stories have saved lives. But I am Roman Catholic… I (agree with George Harrison we are all right) but it as much a part of my Quebecois and Celtic culture so I have picted Matt Talbot a hopeless Irish drunk from early 19th century who with help of Mary asking Jesus abd God and Holy Spirit to make him whole he dedicated the rest of his life to daily mass and working and what ever money her earned he gave to poor. He is Venerated but needs two miracles to reach full sainthood. So I have St. Jude and Matt Talbot, Mary and my friends and family all asking God for a miracle
    Venerable Matt Talbot ,you sobered up through a simple daily program of complete reliance on God after pledging yourself to live without alcohol. You did this with the encouragement and guidance of two spiritual directors. You lived your Catholic faith after the example of Mary our mother and her beloved Son, Jesus our Savior. You began each day with Mass and Holy Communion. You prayed and fasted constantly. You gave what little you possessed or earned through your hard work to the poor.

    We come to you, Dear Matt, on behalf of our beloved Jude who has suffered so much since his fall. We are asking you to intercede for a miracle of healing for Jude from the cancer that threatens to take his life. Please go to Jesus and Mary and plead with them for this great favor. We will be grateful to you for all our lives. Conclude with 3 our Fathers, 3 Hail Marys and conclude with: O Sacred Heart of Jesus, we place our trust in you. Immaculate Heart of Mary we hope in you. Venerable, Matt Talbot, please hear our prayers. Amen

    I am actually happy and grateful every morning, God doesn’t promise anyone tomorrow and each morning I pray and ask God to help me accept the shit I can’t do a damn thing about, the courage to take on the struggles and challenges I can….AND HOPEFULLY BE SMART ENOUGH to know the difference and choose to stay sober for 24 hours. AND THAT IS HOW I AM GOING TO Take on THIS. EVERYTIME I ATTEMPTED TO QUIT ANYTHING FOR EVER I FAILED BY NIGHTS END. BUT I KNOW I CAN FIGHT TODAY AND IF I WAKE UP I AM GONNA FIGHT TOMORROW AND JUST LIKE SOBER DAYS WHICH HAVE ADDED UP TO YEARS…. I HOPE TO HAVE not just SURVIVE DAYS BUT ALIVE DAYS AND hopefully THEY WILL ADD UP TO YEARS. KEEP ME IN YOUR PRAYERS.(feel free to share my Uncle’s Prayer, he is a Monsignor and 40 years sober
    …he was a hopeless alcoholic. Prayer works and miracles happen they may not ne the answer we wanted and you really have to keep your eyes open to notice little miracles
    SO PLEASE GIVE ME HOPE WITH SUCCESS STORIES AND I WILL PRAY AND SHARE THE SAME. BIOPSY AND PER SCAN RESULTS THURSDAY. GLAD I CAN TAKE RXs as prescribed because a couple lorazapan with keep me from flow blown panic attack and PTSD. THANK YOU AND KEEP ON KEEPING ON.

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