Today I got very pleasant news from my oncologist. After five years of using Femara, one of the new breast cancer aromatase inhibitors and seven years of tamoxifen, he is discontinuing drug therapy. Since 1989 I’ve been dancing with breast cancer and I’m one of the many very lucky people who is here to tell about it. As we say in 12-step work, I’d like to share my experience, strength and hope with all of you.
But first I have to say, even though the doctor had told me this past summer that it was his plan to discontinue the drug if all my blood work and cancer markers were good, when he actually told me today, my eyes filled with tears and it was all I could do to keep from howling with joy—and fear. I’ll admit that there is comfort in taking hormone therapy for breast cancer because I’ve felt protected.
It all begin routinely in 1989 when I was 51, 20 years ago. I had gone through a divorce after a 25 year marriage; it was final in 1987. Emotionally it was an extremely difficult time—and I even got laid off a job in that period, right after selling the family home and buying my townhouse. Fortunately, I pieced together work until I got my next job. Those times, however, have made me so much stronger. I had had a predisposition to lumpy breasts, as did all my sisters, and had several biopsies, all negative. Each time was an emotional jolt, however. Then I found a lump in my left breast myself in a routine self-exam. After another biopsy by a local doctor and a clean bill of health after the operating room pathology, when I went back to have the stitches removed seven days later I was told that I did have breast cancer. That doctor referred to it as a “garden variety” breast cancer and suggested mastectomy. I reacted strongly and told him I was getting a second opinion. I had cared for my own mother-in-law the year prior to her death of breast cancer in 1973 and lost a close friend in 1983. I was terrified. Friends referred me to the well-known surgeon at UCLA, Dr. Armando Guiliano, and I went through extensive testing and ultimately a partial mastectomy and removal of the lymph glands. Though the cancer was invasive, it was not in my glands, thank God. Unfortunately, after four days in the hospital and a few days home, I was diagnosed with a strep infection in the surgical area and went back to the hospital for two weeks where a debridement surgery was performed. I was so very sick. I realized how fortunate I was to have early stage breast cancer, once I was out of the woods, and stoically faced into the six weeks of radiation with minimal side effects except for external burning (I thought). I got two oncology consultations after and decided to forego tamoxifen, but my 132 pound self began to gain weight, probably because I was existentially fearful and food gave me comfort. But, I could live with that.
In 1996, my long-term significant other and I broke up and I decided that I had to live a single life while I tried to figure out who I really was without a man. I’d always defined myself as a woman who needed a man. (I’ve never seriously dated again.) I also adopted Cookie that year. In 1997 my Torrance radiologist, a parent at the school I work for, found a suspicious area in a mammogram, but it was the opposite breast this time. They had had a cancellation for a stereotactic biopsy and with Cookie out in the car waiting, I had a biopsy on the spot. Technology had already come a very long way. It was cancer. I saw a local surgeon who immediately said, “Let’s be safe and take this breast off.” I said no, I wanted a second opinion, and went to a local oncologist and asked for my pathology to go to the Tumor Board at Torrance Memorial Hospital. They agreed that a lumpectomy would be safe and that’s what I had, followed again by six weeks of radiation. I worked the entire time with minimal side effects. By the way, my two cancers are not considered recurrent; each one was a separate case and that has been in my favor.
For the next seven years I took tamoxifen and for the last five years I took Femara. I’ve been recalled for more film after some mammograms and had one other negative biopsy in recent years. The Femara, by the way, is very expensive and I was paying a lot each month out-of-pocket once I partially retired. Part D Medicare’s donut hole came all too soon, but hey, I’m here, just grousing a little bit. I developed a chronic cough, GERD, and a lot of aches and pains, but I adapted because I fiercely wanted the best chance possible. I also gained 30 pounds from 1997 until now. I have been eating indiscriminately, I’ll admit, but the doctor said weight gain is a possible side effect, as are the aches and pains, and the exacerbation of depression itself that I’ve dealt with for a lifetime. And I do have radiation scar tissue in the lung and esophagus, partially causing the cough, along with a lot of allergies and asthma. This past year I did have the genetic testing for the BRCA gene as two of my other sisters have had breast cancer, as well as a niece. It was negative.
The bottom line? Unless something else develops, I see the doctor’s nurse practitioner in one year who will order my blood work. Needless to say, I’m so hoping that a lot of my day-to-day symptoms I’ve experienced the last years might lessen as the drug gets out of my system. I’m deeply grateful I never had chemotherapy, just the hormone therapy and other treatments. Chemo has been my greatest fear all along.
I owe so much to so many doctors, nurses and counselors I’ve seen over the years, and to the researchers and subsequent technology that is rapidly improving. I’m grateful for the drugs that have been available to me. Yes, I’m one of the “lucky ones,” and I thank God every day. It is likely that my death won’t be caused by breast cancer.
I know this has been a very long entry, if you got this far. It's probably pretty self-serving as I don’t talk a lot about living with breast cancer as I don't want to scare anyone. (I'll admit I was a pain in the ass when first diagnosed.) But, frankly, I wrote it for myself and will paste it in my journal tonight. If anyone witnesses it, and it helps you or someone you know, I’d love to hear about it. Urge your friends to do self-exams, get those mammograms, and stay on top of the research. Thanks from the bottom of my heart for reading here.