- Posted May 27, 2014 by
Nashua, New Hampshire
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Lessons from a Roller-Coaster-Riding Cancer Survivor
June 1 is National Cancer Survivors Day and this week marks Choate’s 11-year anniversary of beating cancer. She penned this essay about the 10 lessons she learned from her journey in hopes that she might inspire other women to be advocates for themselves. “If I hadn’t gone to the doctor when I did, if I hadn’t been my own vocal advocate, I wouldn’t be alive today, enjoying the best years of my life and the years yet to come,” she said.
- zdan, CNN iReport producer
Carolyn Choate, Nashua, New Hampshire
Lessons from a Roller-Coaster-Riding Cancer Survivor
Who’s winning the war on cancer? I am. Well, me and about 14 million other survivors living in the U.S. today according to the American Cancer Society. For the record, on the upcoming 27th Annual National Cancer Survivors Day on June 1, I’m celebrating my 11th “cancer-versary” from a near-death diagnosis that no amount of “preparedness” could really prepare me for. Still, I hope some of the lessons I learned during my cancer journey may be life-saving to others.
At the time, I thought I knew and did enough to stay well ahead of the cancer curve. Despite regular self-exams and mammograms from the age of 40, no family history, an organic diet, maintaining an environmentally friendly household, and breast feeding my daughters long term, fact is, I really didn’t know just how conniving cancer is. (Lesson #1: Even under the best of circumstances, no one is immune from cancer.)
But in 2003, three months after I passed my annual mammogram at 45 with flying colors, I noticed that the areola of my right breast had changed, felt abnormal. It was thick and leathery while the areola of the left breast was supple and smooth. I knew something was wrong and called my PCP right away. (Lesson #2 & #3: Go with your gut and, don’t wait because timing is so important when treating cancer.)
Another mammogram and an ultrasound came up empty but I still wasn’t convinced. My doctor, whom I had chosen to begin with because of his well-regarded medical reputation and because he valued his patient’s participation in the process, respected my growing frustration and referred me to a surgeon for more thorough discussion and testing options. The surgeon was stumped. I remained adamant. (Lesson #4: Insist on participating in decisions about your own health care; don’t settle for less.)
With exploratory surgery largely gone the way of the dinosaur, he suggested I have several “punch biopsies” around the areola. It wasn’t pretty. Imagine taking the eraser out of the metal casing of a No. 2 pencil, its edge razor sharp, and literally burrowing it into flesh much like a cheese connoisseur uses a trier to sample aged cheese. The bad news: it hurt. The good news: so what? They found the cancer. (Lesson #5: While testing can be painful and scary the alternative can be much worse so always opt for a biopsy if given the opportunity.)
One week later this mildly neurotic but otherwise happy, seemingly healthy, fully employed wife, mother to two young daughters, and part-time graduate student, had a radical mastectomy of her right breast – without reconstruction – and a standard lymph node dissection, under the arm pit, to determine if the cancer was localized or if it had spread. The pathology report that followed stunned everyone on my medical team:
Stage 3b estrogen positive, HER-2 negative breast cancer with four lymph nodes involved. (Estrogen was the fuel, if you will, that fed the engine of my particular type of cancer.) Treatment: aggressive chemotherapy, followed by radiation, followed by oral anti-cancer meds. Prognosis: three years maybe. I was paralyzed with shock. (Lesson #6: if positively diagnosed, get a copy of your pathology report and become familiar with your type of cancer and treatment options as an informed patient is better equipped to advocate for him/herself. Lesson #7: Don’t do as I did and let yourself become victimized by your prognosis no matter bad it seems.)
As it turned out, intuition was my saving grace. The tumor, the size of a golf ball, had taken up residence for God knows how long against my chest wall, its tentacles maniacally extending in the opposite direction, out my areola. In all likelihood, if undetected for much longer, the cancer would have metastasized or spread to my lungs, my brain, or to my bones. As hard as it was to hear I had Stage 3 cancer, Stage 4 would have been far worse.
Clearly, I was absent the day the teacher told the class something like 15% of breast tumors don’t show up on mammograms. Thankfully, over a decade later, cancer diagnostic imaging and technology in general is much improved, detecting ever smaller tumors. In the case of breast cancer screening, for example, some hospitals have cited a detection increase of as much as a 38% using newer 3D Tomosynthesis mammograms over older mammogram technology. (Lesson #8: To my knowledge, no cancer screening test or technology is 100% accurate but that shouldn’t be an excuse not to take them or retake them if needed.)
Of course, there’s lots more to tell about my roller coaster ride with cancer. But I’m far from the only one to walk away from the surreal carnival alive. After the initial shock of diagnosis wore off, I became angry that my cancer took so long to find. Years, perhaps? That phase was quickly followed by one of abject helplessness as I ticked off the days I thought I had left; exacerbated by the “sick as a dog” period during chemotherapy, not to mention the emotional devastation my husband and daughters experienced seeing me in that state, bald and emaciated.
Slowly but surely, I began the steady climb out of that deep crevasse and with it came a new found sense of fight and grit in spite of numerous and terrifying complications due to chemotherapy. All my fingernails and toenails turned black and fell off. My tear ducts spouted like Niagara Falls 24/7 for years. I had my ovaries removed to reduce my body’s estrogen production which plunged me into menopause overnight. One month after surgery, I began taking an aromatase inhibitor for five years, a revolutionary class of drugs developed by Dr. Angela Brodie at the University of Maryland that neutralizes estrogen in the body. I’m convinced this drug was key to my survival as well as perhaps millions of other women. (Lesson #9: The adage, “one day at a time,” truly describes the life of a cancer survivor; sometimes you really don’t know how you’re going to get through another day but you do.)
One year passed and all my scans were clean. In 2005, not only did I feel strong enough to return to graduate school, I doubled my course load so I could complete my Master’s Degree in 2006 before my so-called three year “expiration date.” That goal -and seeing my daughters graduate high school - kept me focused. And so very hopeful. (Lesson #10: Hope, I have learned, comes from within; you needn’t depend on others for it.)
Years four through 11 – 2007 to 2014 - have been the most precious years of all; the years I took for granted before cancer but never thought I’d enjoy after diagnosis. Birthdays, family vacations, college graduations, gardening, that puppy I always wanted, my first triathlon, our 25th anniversary in Tuscany . . .
In 2012, I opted for a prophylactic mastectomy of my remaining breast, again, without reconstruction and with the total love and support of my husband. Far from seeing it like the tragic circumstance of 2003, I was excited for the wonderful, life-changing, life-affirming opportunity it offered. To live free from the worries of recurrence in a body I’ve come to believe in, appreciate, respect, and challenge. I love the way I look and feel. (Lesson #11: If you’re like me, you won’t trade the lessons you’ll learn surviving cancer for anything in the world.)