October is Breast Cancer Awareness month, and I want to share my personal experiences—yet again. Last year at this time, I was a twelve-year survivor. Those who know me or follow my posts are aware that I had a reoccurrence this past January. Once again, it was found through my yearly mammogram and caught in the very earliest stages. Once again, I am profoundly grateful. While there is an abundance of confusing and conflicting information out there, one thing hold true—early detection saves lives. My mission, in continuing to share my story, is to inspire readers to take action on their own behalves, as well as to bring comfort and HOPE to those who are struggling with their own diagnosis—or love someone who is.
I didn’t realize what a daunting task it would be when I decided to write my very first blog in October on the topic of breast cancer. The original idea came from a celebratory place—on Friday, September 28, I had my yearly diagnostic mammogram and was declared cancer free. I am now a 10 year survivor—which puts me in the 82nd percentile of women who make it this long.
In the past 10 years I’ve walked for hope, run for hope, spoken about hope, and even been in an ad campaign about hope. And now, I want to write what may inspire hope— for those going through what may feel like the scariest and loneliest ordeal of your life.
I have much to say, but there is already so much out there. There is certainly no need to remind anyone that October is breast cancer awareness month—everything is festooned with ribbons the color of a new scar.
As survivors our stories are all unique and all similar—the terror, the tears, the pain, the awkwardness in ourselves and others. I’ve learned that when you tell people you had breast cancer most of them reflexively glance at your chest! Although many women would argue that every month is breast cancer awareness month—as the fear is always in the periphery of our minds—there is a need for it to be so in our faces that we cannot hide beneath layers of fear and denial that it can happen to us. We cannot just hope it won’t happen to us or to women we love, we also have to take action.
I have long known I was at increased risk for breast cancer. It was 1972 when my mother sat me down to talk. I was 24. Mom was pale and trembling, and I had never seen her eyes so desperately sad. The story was that she had been pregnant once before me and she had miscarried.
During her pregnancy with me, mom was prescribed diethylstilbestrol (DES), the first synthetic estrogen hormone. DES was created in 1938 and was regularly prescribed for “problem pregnancies” until November 1971, when the FDA told doctors to stop prescribing it for their pregnant patients.*
We, the female children born of those pregnancies, are called “DES Daughters.” We are at increased risk for a number of health issues including cervical cancer, structural changes of the reproductive tract, infertility, and depression. Those of us over 40 are almost twice as likely to get breast cancer, and the relative risk is estimated to be even higher for DES Daughters over age 50.
By 1972, articles were being published describing the outcome of long-term studies of the effects of DES. Mom had read one of those articles.
“I’m so sorry I did something to put you at risk.” Her eyes filled with tears. “I was so afraid I’d lose you.”
Of course I understood. 1948 was a time when no one, especially women, questioned their doctors. DES seemed like a miracle drug—the answer to prayers for those longing for babies. I comforted Mom with gratefulness at being alive and reassurances that I would be just fine. Four years later, at age 28, I was diagnosed with cervical cancer and successfully treated with conization surgery.
In my early forties I developed fibrocystic breast condition, characterized by lumpy, painful breasts. Self-exams became an exercise in terror. Around that time I had a patient who also had the condition. She raved about her breast specialist, a surgical oncologist, exclaiming, “I will pay him to examine my breasts for me.” I thought, “This is my man,” got his name, and made an appointment. Dr. Stephen Sener turned out to be the man who saved my life.
Over the next ten years I had a number of fine needle aspirations of suspicious cysts, two hollow-core needle biopsies, and the surgical removal of a lump. Every time I waited with dread for the nurse to call with the pathology reports—which always came back benign.
In October 2002, that wasn’t the case. My routine mammogram found a suspicious area and another hollow-core biopsy confirmed malignancy. On Friday afternoon, October 25, Dr. Sener called with the news I had always feared—and I came undone.
The following Tuesday, October 29, I had a lumpectomy. After the pathology reports came back, my final diagnosis was ductal carcinoma in situ (DCIS)—the most common type of non-invasive breast cancer. The cancer was microscopic and therefore would not have been discovered without a mammogram. The chances of recurrence of DCIS are 30% and most happen within 5 to 10 years after the initial diagnosis. DCIS isn’t life threatening in itself, but having it increases the risk of developing invasive breast cancer later on. To lower that risk I was advised to have radiation therapy.
I qualified for and chose the option of the brand new (at that time) Intensity-Modulated Radiation Therapy (IMRT). Since this radiation focused exclusively on the cancer site, I only had to go 16 times, instead of the usual 32. I went to the Kellogg Cancer Center at Evanston Hospital where a team of lovely women—my “radiation angels”—measured where the radiation beams should go, permanently marked my chest, and worked hard to save my life while I stared up at the picture of a Ragdoll kitten taped on the machine. They kindly scheduled my appointments at 7:30 a.m. so I could keep my usual work schedule. I never missed a beat, and none of my patients knew what I was going through until long after the fact. Working was what kept me (relatively) sane.
There were months of extreme fatigue and distorted sense of smell and taste—all the usual side effects of radiation. Not to mention depression, abject terror, self-pity, and many, many sleepless nights. But the total love and support from my husband, family, and friends helped get me through.
After radiation therapy was completed, I was prescribed Tamoxifen which is supposed to prevent breast cancer. I stopped taking it when the immediate and long-term side effects began to outweigh the potential benefits. I figured that twice a year diagnostic mammograms would be enough to catch any cancer that might return. Fortunately, I was right.
After 5 years, my diagnostic mammograms were reduced from twice to once a year. After 10 years, I’m left with a scar that has faded to white and one tiny black dot in the middle of my chest that I refer to as my tattoo.
In the intervening years, I’ve exercised and focused on a healthy diet, choosing mostly organic fruits and vegetables and dairy. I have limited meat and stayed away from anything that has hormones or additives of any kind. I drink gallons of green tea in a week, and still enjoy red wine in moderation.
I admit that my yearly mammograms still fill me with terror and dread. And I find it ironic that I’m not allowed to wear deodorant on the one time a year I need it the most. But during the actual procedure I find comfort in focusing on the date of inspection on the mammogram machine—March 11—my mother’s birthday.
Because psychologists know that hopelessness combined with helplessness is an often lethal combination, I professionally and personally contend that when all else seems out of our control, it becomes our responsibility to do whatever is within our power. To my women readers, take action! Know your risk, including your mother’s possible use of DES. Do self-exams and have regularly scheduled mammograms when recommended. (Remember, a mammogram saved my life!) To all my readers, action in the form of good self-care and education to increase awareness is the only way to create more hope—for ourselves, the women we love, and future generations of women.
Since, for me personally, the wolf will always be at the door, I will keep doing what I have been doing—it has worked so far. On September 28, 2012, I became a 10-year survivor! On October 6, 2012, I danced at my son’s wedding! Life is beautiful.
*Although doctors were told to stop prescribing DES in 1971, it wasn’t banned for use with humans until September 2000. Therefore, an estimated 5-10 million people in the United States were exposed to DES, including pregnant women and the children born of those pregnancies. DES sons and grandchildren are also at risk for health issues caused by DES. Read more about DES to find out about your risk or the risk or someone you know at www.desaction.org.