My Unexpected Diagnosis

[Update: I wrote this in October of 2014. It’s been 3 years, and I’m still doing great. Thanks to all of you who continue to check up on me and wish me well!]

It was February 5th, my mother’s birthday and a month before the 20th anniversary of my becoming vegan. I was sitting in a breast surgeon’s office in a paper gown, cradling my biopsied breast and waiting. After about an hour and a half, my surgeon finally appeared, apologizing for keeping me waiting because the results had only just come in. He took a deep breath and said, “You don’t have cancer.” I thought, “I didn’t think I did.” Unfortunately, as I would later find out, we both were wrong.

He went on to explain that the biopsy found abnormal cells, officially called ductal carcinoma in situ (DCIS), but often referred to as Stage 0 or pre-cancer. While I was still reeling from the word “carcinoma,” he explained that these cells might become cancer, so they had to be treated like cancer. My options were a lumpectomy with radiation or a mastectomy. I asked whether there was any chance that the pathology report could be wrong, and my doctor said no.

I was stunned. I left in a daze and went over to my husband’s office nearby to give him the news.

Three months before, a routine mammogram had spotted a place that looked different from my last mammogram. I was sent to the Breast Health Center for another mam and then an ultrasound to get a closer look. The spot was so small and deep inside the breast that the ultrasound technician couldn’t find it at all, so I was given an appointment to return in three months. At that three month mammogram, the “spot” was clearly visible even to me as a glowing white circle in a sea of black and gray. A ultrasound-guided biopsy was scheduled for early the next week.

I’d had one of these biopsies four years ago, and that spot had turned out to be nothing but a harmless cyst, so I had been expecting the same results this time. Like most women, I didn’t think “The Big C” could happen to me. But because I was a vegan, I think I was even more positive that I couldn’t have cancer. After all, wasn’t I doing everything the vegan doctors tell us to do to protect ourselves from heart disease and cancer? Low-fat, lots of green and cruciferous vegetables and brightly colored fruit? No animal products? Moreover, no one in my family had ever had cancer. I naively thought I was immune.

So I didn’t really believe the pathology report, and I became even more skeptical when I read an article that said that DCIS is sometimes misdiagnosed. I decided to get a second opinion from one of the doctors mentioned in that article, a pathologist specializing in breast cancer in San Francisco. I had the hospital send him my biopsy slides, and a week later, I had a consultation with him on the phone. He was unable to confirm DCIS or rule out actual cancer because the radiologist who had performed the biopsy had noted that he had actually missed the “mass.” The biopsy needle had gone in front of the suspected tumor and gathered cells from there, just a few that looked abnormal. But until the actual mass was tested, the pathology specialist couldn’t rule out either DCIS or invasive cancer. He suggested I get another, more accurate, biopsy called a stereotactic biopsy, and I asked my doctor to schedule it.

I had high hopes that this second biopsy would show no DCIS and no cancer. Those hopes were shot down when my new medical oncologist called to give me the results: I had a small invasive cancer, Stage 1, that showed signs of being aggressive. She recommended surgery within the next 3-4 weeks. Just to be sure, I had the slides sent to the pathologist in San Francisco, who agreed with her diagnosis.

So I did what any logical person would do: I took a vacation. It was Spring Break, and my husband and I had planned a 5-day trip to take our high school junior (now senior) to visit 6 colleges in the Midwest. We wanted to do it while we could because we knew that after the surgery, I would need 6 ½ weeks of daily radiation treatments and might not be able to get away during the summer. The trip was a great distraction, but as soon as we got home, I made an appointment with the surgeon and scheduled my lumpectomy for the following week.

The surgery went perfectly. The surgeon removed the tumor and the area around it, as well as three lymph nodes which tested negative: the cancer had not spread to them. A week later, I returned to the surgeon’s office for more good news: The final pathology report showed that the “margins” or edges of the material he had removed were clean, meaning that all of the targeted cancer cells had probably been removed. The only worrisome thing to my husband and me were some figures in the report that seemed a little scary, particularly a “grade” of 3, meaning the cancer was aggressive. My surgeon was unconcerned, and my oncologist said that she would order a genetic test called Oncotype DX to more conclusively determine my chances of having the cancer recur.

A few weeks went by as I recovered from the surgery and waited for the results of the Oncotype test. I was expecting to start radiation soon when my medical oncologist called with the test results. They indicated that I was at a moderately high risk of recurrence. She was recommending that I have chemo.

This was the first time the other Big C word had been mentioned, and for some reason, “chemotherapy” scared me more than “cancer.” The oncologist explained that the type of chemo she was recommending was “well-tolerated” and without all of the serious long-term consequences of other treatments. I wasn’t convinced, and I began frantically researching the chemo itself and alternatives to it.

I was in a panic. On the one hand, I’ve always believed in fighting disease with nutrition and had always been opposed to taking any medication if it could be avoided. On the other hand, hadn’t I been doing just that for the past 20 years? My oncologist was telling me that chemo could reduce my risk of having the cancer recur and spread, that preventing it now would be much easier than trying to stop if it spread to my other organs. I went back and forth, one day deciding that chemo was just too dangerous and the next deciding that I didn’t want to take the risk of the cancer coming back. I was, frankly, a mess. I couldn’t sleep or eat for worrying about the chemo. I finally decided to get a second opinion from a highly recommended breast cancer oncologist at the University Medical Center.

My second opinion doctor came back with the same recommendation as the first: Have the chemo. She assured me that I was young (me!) and healthy and I could handle it. And it would cut my chance of recurrence in half.

My husband was very careful to stand back and let me make the decision for myself, but I knew that he hoped that I would have the chemo. And I was afraid that if I didn’t have it, I would be anxious for the rest of my life, afraid that I hadn’t done everything I possibly could to prevent a recurrence. I’d read the stories of people who had fought their cancer with diet and lifestyle choices, but those people weren’t already eating a whole foods, plant-based diet like I was.

So I decided to do the chemo, four rounds, three weeks apart. I read everything I could find about the treatments and armed myself with supplements that could help prevent side effects. And I found out my oncologist was right: the treatments, though no fun, we’re not as bad as I’d feared. My side effects were minimal, the most annoying being a bad taste in my mouth that would come and go and made it difficult to create new recipes.

Just after my initial diagnosis, I’d begun getting up at 5:30 every morning and walking with my husband and our dog. During chemo, and later radiation, I considered it a point of honor that I never missed a walk. On the weekends, my family and I tried to get out of the house and do a little hiking or local sightseeing so that I wouldn’t feel like the treatment was making me isolated. I ate lots of fruits and vegetables to support my immune system and was careful to avoid coming into contact with people who were sick, and I sailed through my summer of chemo without so much as a sniffle.

When chemo ended, I was determined to take a family vacation before I had to start radiation therapy, so at the beginning of August, we spent a week in the mountains of North Carolina and a few days in Nashville, seeing my newest niece for the first time (and, of course, my brother and sister-in-law).

I got back home and jumped right into daily radiation treatments–33 of them. Again, the treatments weren’t nearly as bad as I expected, but I was thrilled when they ended last week. I couldn’t wait to put all of this cancer stuff behind me.

I didn’t write about this while it was going on mainly because I was afraid that people would offer suggestions and criticisms of my decision to go through with chemo and radiation, and I just couldn’t risk the additional stress that would have put on me. So why am I telling you now? Even though this blog is recipe-oriented and not usually very personal, I wasn’t sure if I could go on writing it if I had to pretend like something this big hadn’t happened to me, something that has consumed the last eight months of my life and has changed the way I see myself and the way I think about diet, veganism, and health.

My first month post-diagnosis, before I had the specter of chemo to worry me, all I could think about was “why” and “how”: Why did I, a vegan who tries to eat healthy, get cancer when no one else in my Standard American Diet-eating family has ever had cancer? What had I done wrong? Had I eaten too few nuts? Too little cilantro? Not enough flax seeds? BPA? Soy?! I worried that I had caused my cancer by never being able to get to my goal weight and stay there, that I didn’t exercise consistently, that I had had only one child late in life and that I hadn’t breastfed her long enough.

I was blaming myself, and I had a lot of help from the Internet. I couldn’t visit Facebook without seeing posts about how eating X (broccoli, nuts, soy, orange) would help prevent cancer. Or people posting about their frustration that a friend or family member had breast cancer and refused to treat it by adopting a plant-based diet. If I, someone who had been eating all the right things (and not eating all the wrong ones), got the message that I was to blame for my cancer, how must other cancer patients feel, the ones who hadn’t been stuffing themselves with kale and mushrooms? Is there a way to promote a plant-based diet that doesn’t point the finger of blame, that doesn’t make grand promises of health, and that doesn’t make people like me feel so confident in the invincibility of our diets that we put off mammograms or other screening tests?

I don’t know. But for me, it’s been helpful to think of the vegan diet as promoting health, but not providing a “Get out of Disease Free” card. My friend Maria made me see that even if my diet didn’t prevent me from getting cancer, perhaps the cancer would have grown much more quickly if I hadn’t been vegan. Perhaps I wouldn’t have sailed through chemo without ever needing nausea meds if I hadn’t been nourishing my body with fruits and vegetables. Perhaps my immune system wouldn’t have stayed as strong as it did or my energy as high if I had been consuming animal products.

It’s also been helpful to me to remember my real reason for being vegan. Though I’ve followed a McDougall-type diet ever since I became vegan, my ultimate reason for becoming vegan was not to improve my own health but to decrease the suffering of animals. So if you’re reading this and worrying that I’m going to be another vegan blogger who goes back to eating animals for her own health, don’t. No diagnosis in the world could convince me to eat another animal or animal product.

As for my current health, I feel great, and I’m confident that I caught this cancer early and have done and am doing everything medically and nutritionally possible to make sure I never have to worry about it again. I’ve tweaked my diet to reduce or eliminate foods I don’t need (sugar, soy, wine, and coffee) and to increase those I wasn’t eating enough of before (broccoli sprouts, flax seeds, organics). I walk at least once and sometimes twice a day, and soon I’ll be starting a workout routine at the gym. I plan to lose the extra weight I’ve been carrying around, which is the biggest threat to my health.

I think the hardest struggle I’ve faced isn’t physical but emotional. My image of myself as a healthy person who never took pills and was confident her vegan diet would protect her from anything–that image took a pretty big hit. I’ve been worried about “coming out” as a vegan with cancer for fear that non-vegans would see it as proof that a vegan diet “doesn’t work” and that some vegans would skewer me for resorting to traditional medicine. In the end, I decided that I had to put my truth out there so that I can get past it and get back to blogging as usual. Next post, you can expect a recipe. Cancer isn’t on the menu.

Thank you to all my family, friends, and friends of friends who offered love and support. And to my church, the Unitarian-Universalist Church of Jackson, and my parents’ church, The First Presbyterian Church of Hammond, LA (love the shawl and cap, y’all!) And to Maria Maggi, Nava Atlas, Dreena Burton, and Stephanie Weaver–wise women all, whose words of advice and offers of support helped me more than they probably know.