The good news in breast cancer treatment is that there are many options: for surgery, for reconstruction, for medications and hormonal treatments.
The bad news is that there are many options.
Long gone are the days when a woman awakened from a biopsy to find that she had no breasts, a decision that had essentially been taken from her. Long gone are the days of solely relying on the staging of a cancer, where a tumor was categorized and treatment was determined based on certain broad characteristics, such as size.
Now the biological make-up of a tumor is looked at; the DNA of a woman's tumor, as individual to her as her psychological make-up, can be studied and treatment can be tailored to her.
I made my surgery decision before the tumor was taken out—trying to make informed decisions in a matter of weeks was overwhelming. I went from knowing practically nothing about breast cancer to making life-changing decisions because of it. My decisions were in part based on my status as a mother of three young children (ages 6, 10, and 14) and partly based on my life experiences, personality characteristics, and the value I placed on certain things.
There were a number of reasons I wanted a mastectomy of my left breast. The unclean margin on my first biopsy and eventual discovery of a malignancy only on MRI (discussed in a previous blog) made me uncomfortable with the ability to detect the disease's extent in my dense breast.
But I learned other things: radiation on my left breast might have implications on my heart health 20 years later. I would be 62, and I was already at a higher risk for heart disease. My dad had his first heart attack at 48, and he had died of a second one at 58. Also, radiation could compromise the elasticity of my skin, and if I wanted reconstruction in the future, it could be complicated or not possible.
The most wrenching thoughts revolved around my healthy right breast. Based on what we knew, there was no medical reason to take the right breast. My oncologist was confident that the "high surveillance" I would have if I kept the right breast (alternately, every six months a mammogram with an ultrasound, or an MRI) would detect a cancer early.
She even suggested that I hold off on the right side, see how I felt after surgery on the left—I could always remove it later.
I felt like I had a preview of high surveillance during the diagnosis stage—every test turned up something that had to be biopsied. Even though some of the masses turned out to be benign, the whole process was an anxiety-filled rollercoaster ride—and I placed a high value on avoiding it. I also didn't feel as confident in high surveillance as the oncologist did, having known of women on high surveillance where the cancer was detected only after lymph node involvement.
I was so lucky this time to find it early (I hoped), could I be so lucky a second time?
I knew high surveillance would mean testing and biopsy appointments that I just didn't want to make time for (and I wouldn't need to do regularly if I had a double mastectomy). As a freelancer and mother of three, my plate was full. I had no choice during the diagnosis period about doing the testing, but my husband and I did choose not to tell the children until three days before the surgery (when there was something concrete to say). Because we didn't want them to take the rollercoaster ride along with us, for two reasons: to protect them from anxiety, but also because I selfishly didn't want to deal with their anxiety when I was having a problem keeping my own in check.
The pressure of putting on an Academy Award-worthy performance of normalcy sometimes caused my legs to give out on me—but dinner had to be served, after-school gymnastics classes continued, carpools had to be driven, Chanukah candles and birthday cakes had to be lit (I turned 42 the month of my surgery), a Kindergarten class play had to be prepared for.
Then there was my personal comfort level.
Could I sleep well at night and wake up to the right breast without anxiety (was it a ticking time bomb?)? Could I look at myself in the mirror with one reconstructed breast and one natural breast and feel normal? How important was it to me that I have a natural breast? Would I regret taking a healthy breast? How do I understand the limited statistics about recurrence when I hope to have another 40 years of life?
In the three years since my diagnosis, I've become aware of a number of studies where the researchers were trying to solve the mystery of why women choose mastectomy—didn't the women know that survival rates are the same for lumpectomy with radiation?
I want to ask the researchers--why do they celebrate targeted medications that treat the individual chacteristics of a woman's tumor, but they cannot accept the fact that the individual characteristics of a woman could affect her decisions about surgery?
I want to ask them why they assume all women with breast cancer should think the same way -- the single woman who is dating, the newlywed hoping to conceive, a mother of young children, a grandmother. I want to tell the researchers that although survival is the ultimate goal, it is not always the only goal. And that each woman has to weigh her own personal pros and cons.
I chose to get a double mastectomy.
On the day of the surgery, I had planned on a normal routine of sending the children off to school and then going to the hospital later, but a snowstorm caused a school delay, and I wound up leaving them instead—the hugs hurt. However, once at the hospital I relaxed—I felt for the first time that I was being active and not reactive, that I was on my way to fighting whatever needed to be fought.
Post-surgery, after I was taken to my hospital room, my husband taped pictures of my children on the wall opposite my bed. These made me smile and were a great motivator for me. Whereas, before the surgery these same pictures had caused me great pain—the possibility that I could die, that I would not be there for their tender years—had been unbearable.
Two days after the surgery, the five of us were in the room, and the surgeon came to my bed with a wide smile. He said that he liked giving reports like mine. My nodes were clear. There was no sign of cancer in my right breast. The two centimeter tumor contained only one-half a centimeter malignancy; the other part of the mass contained a lot of DCIS (non-invasive precancer that I discussed in an earlier blog). And the mass had also contained LCIS (lobular carcinoma in situ).
These cells are not cancerous, but their presence indicates a higher risk of getting breast cancer in either breast. For a multitude of reasons, I cried.