"If you want to see your children graduate from college I suggest you have a mastectomy as soon as possible."
The surgeon's words echoed in my head and every ounce of energy drained from my body like sand in an hourglass. I glanced up at the X-ray on the wall in front of me, still wanting to deny that the indiscriminate black blob in my chest could be a malignant tumor. I don't remember getting dressed or leaving the office. I floated to my car and somehow drove the half-hour home. The only thing I could think about was getting home to my son and daughter, then 11 and six years old, to hold them and tell them how much I loved them. I wanted more time. Lots of time.
I walked through the door and asked them to join me on the couch; their innocent eyes looked down in anticipation of bad news. "My doctor found a lump in my breast but I'm going to get rid of it and everything will be OK," I blurted.
"Is it cancer?" my son, wise beyond his years, asked. I couldn't lie. "Yes, but it's curable, and I'm strong and young and there's nothing to worry about." With that I held them close, fighting back tears and doing what all mothers have to do in the midst of a crisis-remain strong. "I'll be just fine, I promise." I told them to go and play, leaving me alone to try to make sense of my racing thoughts.
I was diagnosed with Stage 3A breast cancer in August 1995 at age 37. This is a fairly advanced stage of cancer. The tumor was the size of a chicken egg and the cancer had spread to the lymph nodes-not a good sign. I'd gone to my gynecologist for a yearly routine exam and he noticed a dimpling in my breast. I guess I didn't think anything of it; having lost some weight I figured it was just some odd redistribution of fat. He ordered a mammogram and sent me to a surgeon to read the results. The surgeon determined, even without a biopsy, that it was cancer.
After the shock wore off, I prayed to God and asked why. "Why me? Why now? How can I be asked to lose a breast, my femininity, particularly now?" I was going through a drawn-out divorce at the time as well. "How," I asked myself and God, "was I going to cope?"
I wondered why the surgeon had to remove the breast. Couldn't they shrink the tumor and give me a lumpectomy? I'd heard somewhere about other tumors that were shrunk with radiation and chemotherapy. I began a frantic search. I don't easily settle for simple answers or advice or follow "rules" or systems that don't make sense to me. Nor do I easily admit defeat. Many women don't go beyond what their surgeon suggests. I did. This is what prompted me to share my story. It is because I was my own health care advocate that I have both breasts today.
During the next several days, I went online and entered "breast cancer" in my search engine and remember getting overwhelmed with information. In the end, the most helpful source of information and comfort was the clinical breast health nurse, Donna Bonynge, at Sarasota Memorial Hospital, who encouraged me to seek an opinion from an oncologist, gave me pamphlets and basically held my hand through the whole process. I wrote out questions. I talked to other breast cancer survivors and got information from the Wellness Community in Sarasota.
I discovered that surgeons refer to oncologists, but usually not until the surgery is scheduled. I didn't want to lose my breast. I wanted a second opinion before the surgery-something my surgeon, thankfully, felt completely comfortable with. The hospital's breast health nurse gave me three oncologists to consider and I interviewed them in person.
I chose Sarasota oncologist Richard Brown. He was about my age, open to questions and interested in doing further investigation when I asked why we couldn't shrink this tumor first. He said this procedure, called neoadjuvant chemotherapy, or, shrinking the tumor prior to surgery, hadn't been tried with this stage of breast cancer, but he was more than willing to research the medical abstracts. Just a few days later, he discovered several studies from the U.S. and Europe that showed neoadjuvant chemotherapy was a promising approach to saving the breast. The response rate was in the 60-to-80 percent range in terms of tumor shrinkage and preliminary survival data showed that this method yielded better survival rates than the traditional method of mastectomy followed by chemo.
I decided to try it. I became the first woman in Sarasota to utilize this treatment modality. I became one of the main case studies, a topic of discussion, in the weekly tumor registry board meetings at the hospital. I was like the goose with the golden egg for these cancer specialists. I offered them the opportunity to go beyond standard protocol. I questioned, I insisted, I continued to ask for new approaches. When I asked the surgeon to do a needle biopsy as opposed to cutting, he consulted with one of his mentors and agreed to perform this procedure as opposed to performing surgery-something he'd never done before. My surgeon, medical oncologist and radiation oncologist became a team on a mission. Their enthusiasm was infectious and made me feel, together, we could conquer this cancer.
In four treatments of chemotherapy, the tumor shrank 50 percent, enough to warrant a lumpectomy, a procedure that removes the tumor and surrounding tissue instead of removing the entire breast. Afterwards, I went back for more chemo and on to radiation during the course of a year.
In addition to mainstream medicine, I sought alternatives. I used visualization, prayer and massage. I took antioxidants. I went to a therapist and an energy healer. I read countless books, including You Can Heal Yourself by Louise Hayes. I worked full time and kept my sights on my mission-seeing my kids graduate high school at least. When my hair started falling out, I walked the beach with my best friend and threw clumps of hair to the birds so they could make nests. We made a fun day out of picking out wigs, and I ended up with two--one with the longer hair that I'd always wanted.
Very few people knew I had cancer. When they found out, they couldn't believe it. I even did "chemo to go," wearing a little machine in a fanny pack that injected medicine into me periodically. I convinced my doctor I could give myself shots in the stomach when it was too inconvenient to go into the clinic. I lived life as fully and normally as I possibly could as I went through the "Big C."
My oncologist told me in the last eight years many women in Sarasota have chosen the method we used. He says since my case a number of surgeons finally have been referring to oncologists before they schedule surgery. Countless women are saving their breasts and surviving with dignity in Sarasota and throughout the world. The key word here is dignity. While many claim they don't care if they have breasts or not, I want to emphasize that it is a choice. What's just as important is that the case studies my oncologist discovered not only help women save their breasts but actually can be more effective in treating the cancer.
Still, some surgeons are slow to come around. I want women to understand upon first receiving that gut-wrenching news, which is normally delivered by a surgeon, that cutting (I choose to call it "maiming") is not the only way. It is not my intent to discount any surgeon's advice. When seeking choices of medical treatment in a very complex world, I suggest people consider a very simple concept. Surgeons cut. Medical oncologists use medicine. Radiation oncologists use radiation. That's what they know best. As professionals, we can only know what we're trained to know. With a complicated disease like cancer, there are many alternatives. That's why it's imperative that people become their own advocates. Look at all the data. Talk to a variety of professionals. Ask them to think out of the box. Seek a higher, more informed choice.
Today, many physicians say that their patients are one of their most important sources of information. It is difficult for medical professionals to stay current on every medical improvement in their field, given the current breakneck speed of medical technology and the complexities of a distressingly broken system in which doctors see more patients for less money due to insurance requirements.
I feel grateful that I could be, in some small way, a contributing factor in bettering the lives of other women by working hand-in-hand with my physicians. When I see my oncologist for my bi-annual checkup (which I always schedule around my birthday and Thanksgiving as another thing to be thankful for!), he often refers to me as his "shining star." I see the look of pride on his face as he reviews the blood work results, rattles off the requisite list of questions and tells me, "Good job!" I tell him he's a star, too, as he races off to another of his 40 or more patients for the day.
I am a fairly private person, and it's taken me eight years to garner the courage to tell my story. It's personal. It's a little embarrassing. I didn't want to come off as a victim. Or as a know-it-all. I tell this story with hope that other women will read it, and will not only survive but thrive beyond breast cancer, with bodies intact, minds at peace and spirits soaring. And I pray that not only will we see our children graduate from college, but our grandchildren!
Breast Cancer Facts
Breast cancer is the most common form of cancer in women in the United States after skin cancer. Both its cause and its cure remain undiscovered.
Based on the current life expectancy for women in the United States, one out of nine women will develop breast cancer in her lifetime-a risk that was one out of 14 in 1960.
In 2003, 211,300 new cases of female invasive breast cancer (cancer that has spread to nearby tissue, lymph nodes under the arm or other parts of the body) and 55,700 cases of female in situ breast cancer (noninvasive cancer) will be diagnosed. Of these noninvasive breast cancers, approximately 85 percent will be DCIS-ductal carcinoma in situ (abnormal cells that are found only in the lining of a milk duct and have not spread outside the duct).
Breast cancer alone is expected to account for 32 percent of all new cancer cases among women in 2003. A new case will be diagnosed every two and a half minutes.
This year, 39,800 women are expected to die of breast cancer. Breast cancer is the second leading cause of cancer death for all women (after lung cancer), and the leading overall cause of cancer death in women between the ages of 20 and 59. A woman will die from breast cancer every 13 minutes and over 1 million women in the United States have died of this disease since 1970.
Breast cancer incidence increases with age, rising sharply after age 40. About 77 percent of invasive breast cancers occur in women over age 50. The average age at diagnosis is 62.
Diagnosis, Treatment and Survivorship
In the United States, more than 80 percent of biopsied breast abnormalities prove to be benign, but any breast lump or symptom must be evaluated by a medical professional. New, less invasive biopsy procedures (such as stereotactic core needle biopsy) permit removal and evaluation of breast tissue in a surgeon's or radiologist's office and require no special preparation or recovery period.
If detected early, breast cancer can be treated effectively with surgery that preserves the breast, followed by radiation therapy. This local therapy is often accompanied by chemotherapy and/or hormonal therapy. Currently, 63 percent of breast cancers are discovered at an early, "localized" stage, and five-year survival after treatment for early-stage breast cancer is 97 percent.
Today, only six percent of breast cancers are diagnosed at an advanced or metastatic stage, when the five-year survival rate is 23 percent.
There are more than two million breast cancer survivors in the United States today.
To Find Out More
. . .about breast cancer diagnosis and treatment (including recurrent and advanced breast cancer) and for many other resources, call or visit NABCO at (888) 80-NABCO or www.nabco.org.
. . .about new treatments, clinical trials, options for women and families at high risk, and genetic testing for breast cancer, call or visit the National Cancer Institute at (800) 4-CANCER or www.cancer.gov.
. . .about financial, insurance, and practical concerns after a cancer diagnosis, call or visit Cancer Care at (800) 813-HOPE or www.cancercare.org.
. . .about emotional and family support and coping with breast cancer, call or visit Y-ME National Breast Cancer Organization at (800) 221-2141 or www.y-me.org.
Support/Wellness in Sarasota
- Sarasota Memorial Hospital's Breast Health Center, 1700 S. Tamiami Trail, Sarasota, 917-4101, for support groups and counseling services from clinical nurse specialist.
- Wellness Community of Southwest Florida, 3900 Clark Road, Sarasota, 921-5539, for family and individual support groups, wellness classes, cancer library/research.
- American Cancer Society, 1750 17th St., 365-2858 for general information, limited financial assistance, transportation to doctors' appointments.
- Alice Greenspan, cancer survivor, energy healer, spiritual counselor and wellness author/lecturer, Ionie Center, 1241 Fruitville Road, Sarasota, 927-7780.
Source of statistics is from the American Cancer Society, Cancer Facts and Figures 2003, January 2003. www.cancer.org.
American Cancer Society, "Cancer Statistics, 2003," A Cancer Journal for Clinicians, January/February 2003