The Cost of Breast Cancer: How I Coped With a Terminal Diagnosis

Nora Zelevansky
Posted
cost of breast cancer

The author, second from right, with friends at the Making Strides Against Breast Cancer Walk in Central Park, NYC last October.

The Price of Being Sick

Right after we discovered that the cancer was back, I was put on an expensive oral chemotherapy drug called Tykerb. It was classified in such a way that my insurance only paid half the cost, meaning I owed $1,800 a month for that medication alone. I didn’t qualify for financial aid through the drug company because my salary was too high, but my mother, a pharmacist, reached out to all her friends to find opportunities for aid. A social worker at Roosevelt Hospital, where I’d been receiving treatment, helped me apply for help too.

At first, I felt guilty. I thought, I have a job and insurance! Maybe others need it more. But the costs of treatment, plus my $1,500 monthly mortgage payment, started to weigh heavily. I had to try.

Ultimately, the Patient Advocate Foundation awarded me $1,750, CancerCare offered $325 and the Pink Daisy Project sent me gift cards to Trader Joe’s, Subway and Applebee’s that added up to about $400. I also applied for help from Team Continuum, a hospital conglomerate to which Roosevelt belongs. They paid the management fee ($148 per month) at my condo for four months. Insurance covered a couple wigs when I first lost my hair, then the American Cancer Society gave me one in 2012. Every bit made a difference, and I’m so grateful.

RELATED: How My Disease Is Bankrupting My Family

In 2010 I filed for short-term disability, which came to about $800 a month, when I was off work for my surgeries for six weeks. I had to be out for a lot of treatments, but my incredibly generous boss said I could take the time, as long as I maintained my work. I never took a reduced workload. I couldn’t travel in the beginning, so I missed some business trips, but mostly I just worked it all around my doctor’s appointments.

Each year has brought a different bill for things like deductibles and coinsurance amounts for chemo, payments for my out-of-network doctors and copays for those in-network, more tests and prescriptions. In 2010, the year of my diagnosis, my total out-of-pocket costs were $11,708.51. The next year, my total out-of-pocket costs were $10,693.12, and in 2012 they were “only” $6,423.17.

Looking back, as far as I can now track, the total billed to my health insurance company was $1.26 million—which doesn’t count the first year and four months of my treatment when I had two chemo regimens, two surgeries and one course of radiation.

In some ways, I was financially fortunate. I have always been a saver, so I had at least some money to fall back on in a worst-case scenario. And, miraculously, in 2008, before any of this ever happened, a fellow Villanova alum called to sell me long-term disability insurance. I only listened to the pitch to be nice, but then I mentioned it to my father and he said it couldn’t be a bad idea. So I signed up through Northwestern Mutual. That has proved incredibly important.

I can’t imagine how people without insurance do it.

  • Angie Young

    Thank you for sharing your story. You are incredibly brave and strong. Peace be with you.

  • Jennifer Osborn

    My condolences to Emily’s family. She sounds like she was a wonderful person who was taken much too soon.

  • susanjohnston

    This is a heartbreaking story but I appreciate Emily’s willingness to share it. My heart goes out to her friends and family during what must be an unspeakably difficult time.

  • Lesley Hanson

    Lesley Hanson – Trinidad and Tobago

    I think this artilce should be on the front page of every newspaper so that all can see the necessity of having Health Insurane.

  • Globetrotting Mommy

    What a wonderful story about my friend Emily. I will miss her tremendously.

  • Helene

    Great Article. I have cancer and I can relate to all the bills. I have received some help from my local hospital because my husband was layed off from his job. Emily was a very strong and brave person…..This article should help alot of people…..

  • Kat

    This is a great story–thank you for sharing. I visited Emily’s blog–what a truly special person she seems to have been.

  • Halle

    Thank you for sharing this story with us. Emily’s bravery through her fight with cancer is inspiring and touching. I hope that this story spreads far and wide. She was beyond amazing and everyone should hear her story.

  • Lena

    This is such a touching story. I was moved to tears. Thanks LearnVest for posting/sharing and my thoughts are with Emily’s family. Praying they can find some comfort in these sad days.

  • LJ

    Thank you, LearnVest for sharing the story of such a great individual. I am inspired by her hard work and dedication even in the face of such adversity.

  • Lisa

    What a beautiful way to document such a sad and scary time! Emily makes a brave decision to share something so personal and so difficult to talk about and in doing so, she helps her readers understand and appreciate another side to dealing/coping with cancer: money and preparation. I have a friend who is uninsured and dealing with her breast cancer and I know the financial side of the equation is equally as daunting as healing herself! I’m so sorry for Emiliy’s family and friends to have lost such a bright and enterprising young women. Thank you for sharing her story; it has insprired me to get involved with my own long-term health insurance options.

  • http://citygirlsherine.blogspot.com/ Sherine P

    What a story, my condolences go out to Emily’s family .
    A family friend is suffering from BC and it doesn’t look good but she fights every day! These women exemplify strength. I was going to give proceeds of my pink swarovski embellished eyewear sales (on enerjiee.com) to Susan G. Komen… but maybe the Pink Daisy Project may be my choice. I hope emily is at peace.

  • Sharon

    Condolences to Emily’s family… this story was so sad (I am crying at my desk at work right now), but I am glad that LearnVest published her story to keep a bit of Emily alive.

  • Sasha

    All I can say about this post is anyone who thinks America is the greatest country in the world is wrong. The fact that health care is equated to a luxury item in this country is disgusting. I lost my mother because of it.

    My Mom was my best friend, and the greatest person I’ve known in my life but she was unemployed and had to health insurance so she used the approach to health care that a huge amount of people are forced to rely on – ignore it and hope it goes away. It didn’t.

    By the time she couldn’t ignore it anymore and she told me she wasn’t feeling well, I took her to a doctor where they diagnosed her with stage four breast cancer. She was diagnosed in April 2008 and she died in December of that same year. Those few months of treatment completely bankrupted her.

    If we had lived in a country with socialized medicine like the rest of the civilized world, it likely would have been caught earlier, and I would probably still have a mother.

  • April

    Thank you Emily and your family for sharing. It’s something most people probably don’t even think about until it happens to them. I agree with the comment that said it should be on the front page of every newspaper as to WHY everyone needs health insurance. THIS is why.

  • Holly

    My goodness – what a moving article and blog. My condolences to Emily’s family and “entourage.” There is a lot to be learned from this article, about finances and life!

  • Molly Debroy

    This article is such an honest account of a very confusing time in Emily’s short but meaningful life. Her blog is truly her legacy. Rest in peace.

  • kgal1298

    So sad. This is also why I know people who have been doctors who choose to forgo treatment and instead spend their last days with the least amount of pain as possible and of course living because they know there is only so much time and sometimes it’s better to pass quickly than to prolong it, but in life the greatest fear we have is death. Which is also the reason with finances I’ve always been in the middle morality is just that once we’re dead does debt or riches matter? Not as much as making sure you live each day and make the most of it at least not from my view point. it’s sad she didn’t get more time though. RIP.

  • robin

    Thank you for this story. I had a lump in my breast at age 30 but I was fortunate it was benign. This could have been my story if I was not so lucky. Blessings to Emily’s family. She was a terrific person.

  • Kenishia Mais

    May Emily’s beautiful soul rest in peace. I was literally moved to tears while reading this. I tremendously thank for sharing her story. This is really a wake up call for me personally, as it relates to making further preparations for life’s happenings. Admittedly, I have never seriously thought about health or life insurance seriously until this very day, it was always a fleeting thought. Guaranteed, my weekend will be spent reminding those dearest to me how much I love and appreciate them, and finding myself good life and health insurance policies. Emily seemed to have been such a bright, cheerful and loving person – it’s apparent that the world lost a great woman much too soon.