I’m in the war of my life, at the door of my life, got no choice but to fight til it’s done.
War of My Life, John Mayer
In honor of Breast Cancer Awareness month, I’ve decided to repost a series of blogs I wrote last year (2013) about my breast cancer journey. Writing about the process helped me cope with the feelings I had before, during and especially after my surgeries, and I received several emails from women going through the same or similar experience.
My hope in reposting these blogs is that more women whose lives have been impacted by breast cancer will know that they are not alone. And so, without further ado, here is the start of of my journey:
I love John Mayer. More correctly, I love John Mayer’s music. I mean, he’s not hard on the eyes but he is commitment phobic and, well, I’m a happily married woman. But his music is bluesy and soulful and it speaks to me.
Last Monday, as I drove the 55 miles from home to work, I heard the song War of My Life, and while I’ve probably heard the song a hundred times, this time, it spoke to me. And I realized that, since I received the results of my breast biopsy on April 30th (see I’m a Noble Warrior, I’ve Got This), I’ve been engaged in the war of my own life.
Here’s how it started. On Monday evening, April 29th, I picked up a voicemail from my doctor. “Great news on the biopsy, Suzanne. No cancer. I’ll call you tomorrow to check in.” I heaved a small sigh of relief (I didn’t really expect it to be otherwise) and went to bed.
The next morning as I’m driving to work, the phone rings. I answer it (using my built-in, hands-free setup), and it’s my doctor. “Hi Dr. McClure,” I said, “thanks for the great news on my biopsy.” “Yeah, about the biopsy,” she begins, “it’s true that you don’t have a cancer, but they did find something called Atypical Lobular Hyperplasia.”
“Atypical what?” Turns out that Atypical Lobular Hyperplasia (ALH) is a pre-cancerous condition (in the milk lobes) which may or may not become cancer. “So that means there is surgery in your future. An excisional biopsy (lumpectomy) at a minimum. Unless you decide to do something prophylactically.”
“Wait, what?” I said. “Prophylactically? As in, mastectomy?” By the time I pulled into the parking garage at work I felt like I was living in a parallel universe. And then, when I’d gathered my wits about me, I set out to learn more about my condition. And when I’d gathered all the facts, I made the decision to have a bilateral mastectomy. Here’s why:
1. A person with no risk factors for breast cancer has a 10% chance of getting breast cancer in their lifetime. People with ALH have a 4-5 time greater risk of getting breast cancer. So instead of 10%, my risk is now 40-50%.
2. Women between the ages of 45-55 (I’m 52) with ALH have the highest future risk of developing breast cancer, making my risk higher than 40-50%.
3. Women with a strong family history of breast cancer have an even higher future risk of developing breast cancer.
I have a strong family history of breast cancer.
In 2007, at the age of 51, my sister Diane was diagnosed with ALH. Before undergoing a lumpectomy to remove more tissue, she had a breast MRI which revealed nothing out of the ordinary. The lumpectomy revealed that she had cancer, and that they did not get clear margins (meaning there was cancer in the perimeter of the sample).
After undergoing another MRI, the radiologist saw something in the other breast that looked like it could maybe be something suspicious after all. A second lumpectomy was performed on the other breast which also revealed cancer with no clear margins.
It became clear that my sister’s best option was bilateral mastectomy with reconstruction (also known as radical mastectomy). The pathology of the tissue removed revealed hundreds of tiny tumors in both breasts that were not seen on imaging.
Three months later, at the age of 49, my sister Pamela found a lump. A mammogram revealed nothing unusual. An MRI revealed a tumor. Deciding on the more conservative lumpectomy, the pathology revealed two tumors, side by side: one tumor was cancer, the other was ALH.
Though both of my sisters tested negative for the breast cancer gene (BRCA 1 and BRCA2), a woman who has more than one immediately family member (mother, sister, daughter) who has had breast cancer but tested negative on the BRCA 1 and 2 test, has about a 40% chance of developing breast cancer in her life.
So, what does all that mean for me? In terms of risk, I’m not sure. It isn’t as simple as adding the risk of having ALH to the risk of having strong family history together. The truth lies somewhere in between and every medical professional I’ve spoken to, from surgeons to oncologists to genetic counselors, seems to have a different answer.
But the bottom line for me was this. Whatever the actual risk percentage is, it is too high for me.
And so, after carefully considering all options—weighing the pros and cons of each—I have decided that, rather than playing Russian Roulette with my life and opt for the most minimally invasive option (lumpectomy), I’ve decided to eliminate my lifetime risk (as well as a lifetime of fear) by having a bilateral mastectomy (I prefer even numbers and don’t wish to be known as the Uniboober).
But I didn’t come by this decision quickly or easily or without a lot of struggle (I’ve swung to both sides of the pendulum so many times it’s made me dizzy), and until last week, I wasn’t 100% certain I’d made the right decision. And then, last week, events unfolded that crystallized my decision. Here’s what happened:
Last Monday, while discussing my situation with a coworker/friend, she said, “You know, Suzanne, it seems to me that you’ve been given a warning sign. Maybe your mother is trying to tell you that she couldn’t stand to see another one of her babies suffer the way your other two sisters did.”
That night, I broke down and cried for the first time since this began (which is shocking for me, I’m a crier). Big gulping sobs that shook my whole body. As I crawled into bed that night I snuggled the teddy bear that my mom had crocheted for me when I was eight twenty-eight and when I held him, I felt her love. And then I talked to her. “Mom, I need for you to tell me what to do. And you need to pretty much hit me over the head with the answer.”
Tuesday I saw the breast surgeon who told me that ALH is tricky because, when it becomes invasive cancer, it isn’t normally seen on imaging (as in both my sisters cases).
Wednesday night my sister Pamela called. I hadn’t spoken to her since the day of my diagnosis and I didn’t know which way on the pendulum she would swing. When I finished telling her of my struggle to make a decision she said, “Well Suz, it’s a no brainer. Have the surgery. All of us Whitfield girl’s should have it. I wish I’d done it myself.”
And in her words I heard my mother’s voice, as clearly as if she’d been standing in front of me (hands on hips and wagging a finger at me). And so my decision was made.
On Thursday I woke up feeling lighter than I had in a long time.
On Friday I spent the morning communing with butterflies (I simply adore them) at the Conservatory of Flowers in San Francisco’s Golden Gate Park. That afternoon I met with the plastic surgeon who will be doing my reconstruction, and he was funny and kind (seriously, his name is actually Dr. Kind) and it further cemented my decision.
And finally, as I sat in rush hour traffic on the freeway heading home, I kid you not, a white butterfly flittered in front of my window, pausing for several seconds before taking off.
In that moment, I knew my mother was speaking to me. Good job, Suz. You made the right choice.
And so, sometime soon (I’m trying to plan around the John Mayer concert on July 23rd) I will be having a bilateral, nipple sparing mastectomy with reconstruction.
What about you? What “war” have you had to fight, and how did you go about making your decision? I want to know.