In August of 2007 I went to the doctor for a checkup. My doctor recommended a mammogram because my mother had recently been diagnosed with breast cancer for a second time. I was 43 and at that point they were only giving women in their early 40s mammograms if there was a family history of breast cancer and both my mother and her sister had had breast cancer. When my mother was first diagnosed, in 2001, she had a lumpectomy and radiation, which was the standard treatment for what they called breast cancer, but what I’ve now come to understand was DCIS, or ductal carcinoma in situ, which they also call stage zero, but may or may not be correlated with invasive breast cancer. It’s looking more and more like it might be its own animal, that it might be a marker for cancer, but that it’s not in fact cancer.
My mammogram looked problematic, so in early September, just before my mother’s mastectomy, they did a needle biopsy on me, which is a horrifying and extremely painful procedure. The needle biopsy was inconclusive so I was scheduled for a surgical biopsy. I said to my doctor, “I can’t do this. I can’t. I don’t want to know. Can I put it off to go be with my mother for her mastectomy?” She said sure. So I didn’t yet have my diagnosis when I flew from Los Angeles to New York to be with my mother and have the very life-altering experience of being with her through her surgery and helping her with her drains after the surgery. My father is very squeamish — he couldn’t do it. So I’m doing this very intimate work, intimate for obvious reasons, but also because of what the drains are — they’re these plastic vials that fill up with blood and fluid and have to be dumped at intervals until the breast loses all of its excess tissue and liquid. It’s intense. It’s gothically intense. It definitely shaped my decision to not have a mastectomy. I think women faced with the decision of having a mastectomy would feel differently if they had seen one up-close and personal. It’s not an easy recovery. It’s radical surgery that takes a great deal of time to recover from at any age.
I didn’t tell my mother what was going on with me because there was nothing to tell. But I knew that three weeks in my future was the surgical biopsy, which would reveal if I had breast cancer. At the same time I was working maniacally — this is how I cope — finishing my book manuscript and filing my tenure materials. I had the surgery on a Monday and that Saturday I flew from Los Angeles to give a paper at a conference in Philadelphia.
When I got home, the hospital called and asked me to come in. When they ask you to come in, usually it’s bad. Good news comes over the phone; bad news is delivered in person. But my doctor, whom I came to just adore, didn’t deliver the news. I was in a teaching hospital and some 25-year-old dude was tasked with having me as a training subject for delivering the cancer news. Let me tell you, he did not do a very good job. It was all I could do to not say, “Okay, and … scene. Let’s do this one more time because that was really not done well.”
He said, “Bad news. You have DCIS.” And I said, “I know what DCIS is because my mother had it. What you’re telling me is I have cancer.” He said, “Yes.” I said, “Okay.” Then I don’t remember very much after that except wandering out of the building and then sitting on a curb until I finally called someone. I was alone. My partner was teaching in New York for the semester and I had gone to the hospital by myself — something I would never, ever, ever tell anyone to do. I never went on another visit alone.
I was utterly terrified. My way of dealing with this really scary situation was to research the shit out of it — I’m a historian, so this was my training — and to get my partner with a Ph.D. to do the same thing. I wasn’t someone who necessarily thought that the medical establishment was going to give me the truth. If I wanted to find my way around this diagnosis, it would be up to me to do that. So I had a research team. Most people don’t. I don’t pretend to understand medical research but I was at least able to ask the kinds of questions that got me a different set of answers than if I hadn’t had that information, which is really not fair. You shouldn’t have to be your own medical advocate, but it’s actually necessary.
I had already done all this research for my mother. She hadn’t wanted to have a mastectomy but her doctors had told her that she absolutely needed to, so I had gathered some information to help her and even then there were some studies that showed that DCIS was being overtreated or perhaps could be treated with something less invasive than the full-on standard of excision — anything from a lumpectomy to a mastectomy — plus radiation and chemo. It’s being treated with these radical procedures, but it’s not entirely clear what the relationship is between DCIS, invasive breast cancer, and mortality. Women really don’t want to say no to doctors, especially when the big C is involved.
I learned that DCIS grows inward, not outward. When people talk about cancer they generally mean something that is invasive. But DCIS is confined to the duct — that’s what’s meant by “in situ.” So one of the questions I asked the doctors was “What’s the relationship between the occurrence of DCIS and invasive cancers?” They still don’t have an answer for that.
A month after the surgical biopsy my partner flew out and we met with my doctor. The doctor asked a lot of questions, really drew me out, and I really had to sell her on my decision. I think she really wanted to make sure that I wouldn’t regret it. It was not what was being recommended by the American Cancer Society. It was not the standard of care. This was outlier medicine. She was treating my questions as if no one had ever asked them. But once she was clear that I was making it with full knowledge and with my full faculties, it seemed she respected it. Together, we decided that we would do what’s called watch and wait or active surveillance, which would be a combination of MRIs and mammograms given much more regularly, at three- and then six-month intervals.
Everyone was incredibly supportive about my decision. I never would have gotten through this without all the people who went to doctor’s appointments with me or sat and watched old movies with me. My parents were also incredibly supportive but it was painful to see that my father felt very guilty that he had buckled in front of these doctors who insisted there was no other answer, that he’d be putting his wife’s life in peril if he even asked about a lumpectomy rather than a mastectomy. The decision was ultimately hers but he clearly felt guilty that he hadn’t helped her ask more questions. She’s an otherwise healthy, active person — she’s a tennis player, a golfer — but it took her a really long time to come back from the mastectomy.
I had two scares — two times something showed up in the scans — since I made the decision eight years ago. It’s only in the last year or two that I’ve really been able to say, “Okay, maybe this is done.” And my mother had another recurrence in the other breast last year. It’s DCIS again and they wanted to do a second mastectomy and she absolutely refused. She treated it with a lumpectomy even though this is her third recurrence. She’s very clear that having gone through it once, and having seen me make the decision I did, she wasn’t going to get a mastectomy.
I think it’s really chilling, the degree to which breasts are seen somehow as something that can be lopped off. Can you imagine the situation in which someone would say, “Oh, the pinky, that’s just a minor digit. You don’t need it.” The integrity of a hand is a beautiful thing. I wasn’t ready to lose this part of myself. It wasn’t just a matter of vanity: Breasts are a secondary sex organ. I will also say that even with the biopsy, there was a loss of feeling after that.
A lot of people want to do something immediately and they want to do the thing that will take the risk down to zero. Of course, there’s no way to take the risk of cancer recurrence down to zero ever. I saw a Time magazine in a waiting room yesterday and on the cover was “What If I Decide to Do Nothing: Breast Cancer’s New Frontier.” This many years later, it’s still seen as really unusual for people with DCIS to refuse radiation and the oncology drugs like Tamoxifen and just watch and wait. It’s very hard to ask, “What happens if I do nothing right away?”
My advice for people who get diagnosed with DCIS is to do whatever feels right, and yet I think braving doctors, asking questions, finding out what the risk factors are is really important. People are differently risk averse. For some people, the most extreme response feels safest to them. For anyone who can stand living with this degree of uncertainty, less surgery is a really good thing, if it’s possible.
I have a good friend who was diagnosed with DCIS at almost the exact same time I was. She opted for a double mastectomy. That felt like the right decision for her. I respect that. It’s not a decision I would make. I have a different relationship to gender and my body than she does. It took her a really long time to recover, well over a year.
With different stages of cancers, I think you can’t mess with it, but the new research on DCIS is so vindicating. Because screenings can pick up so much more now, DCIS diagnoses have skyrocketed and DCIS is being treated like other breast cancers, so here you have thousands of women being diagnosed, being terrified that they might die, seeing themselves as cancer patients, when in fact women diagnosed with DCIS are no more likely to get breast cancer than other women. I really think the standard treatment being offered to people is scary and extreme and needs to be questioned.