The Recurrence Nightmare

For the first year after I finished treatment, I felt invincible: a conqueror, a warrior princess. I had come through chemo, surgery, more chemo, and hormonal therapy with fewer side effects, less pain, less downtime, and more energy than anyone around me had ever seen before. My psyche, my marriage, my family, and my career were all still strong - each impacted in different ways by the long slog through my cancer treatment, but fundamentally sound and perhaps even strengthened by adversity. Cancer gradually faded from my thoughts, and, I felt, from my life.

But as much as we survivors might wish to be done with breast cancer, breast cancer is never done with us. (Olivia Newton John recently announced her recurrence, 25 years after her initial diagnosis.) Of the fifty or so breast cancer patients and survivors I now know, the statistical reality is that five or six are likely to have a recurrence sometime in the future. I could be one of them. It's hard even to write, but it's important to know.

An often-cited statistic is that a women has a 1 in 8 chance of developing breast cancer, approximately 12%. The odds of surviving early stage breast cancer are highly individual and unpredictable, but as it so happens, my oncologist has estimated my specific chance of recurrence at about 12%. To a casual observer, that would seem to mean that my chance of getting breast cancer now is the same as any woman's. I've heard it explained just that way to other cancer patients, presumably to alleviate their anxieties about recurrence. And it is very reassuring to think of it like that. The problem is that it's completely wrong.

First of all, you have to consider the timeframe of each statistic. The 12% chance of developing breast cancer that all women face is a lifetime risk, and it increases greatly over that lifetime - a child has a 0% risk, while a 70-year-old has a 4% risk. The 12% chance that my oncologist gave me is very different, because it has a 10-year horizon. Contrast that against the average woman in her thirties, who has a 0.44% chance of getting breast cancer in the next ten years, and it's easy to see that the risk is not the same.

Perhaps even more significant is the difference in the definition of "breast cancer" between the first statistic and the second. In the first case, the statistic applies to all stages of breast cancer. 95% of breast cancers are non-metastatic when they are first diagnosed, meaning they are highly curable in most cases. So of that 12%, more than three-quarters will survive their disease. In the second case, my individual case, the 12% chance is of distant recurrence - in other words, metastasis. Metastatic breast cancer is incurable, so the 12% chance my doctor gave me is really the chance I have of dying of breast cancer.

Despite the fact that metastatic breast cancer (MBC) accounts for almost all breast cancer deaths, it is not well understood. Incredibly, statistics are not reliably collected for metastatic recurrences, which comprise the majority of MBC cases. Statistics are only gathered for the 5% of initial breast cancer diagnoses which are Stage IV metastatic (also called "de novo" disease). Death from MBC is often recorded to be from other causes such as pneumonia or liver failure, rather than as a complication of breast cancer. So we don't truly know how many people are living with it, nor how many have died from it.

What is known is that the vast majority of breast cancer metasticizes to four places in the body: the bones, the brain, the liver, and the lungs. (I sometimes hear those four words concatenated in my head - bonebrainliverlungs - and may never be able to think of them separately again.) Early symptoms of such metastases are very different depending on their location - for instance, metastasis to the brain may cause headaches or vision disturbances, while metastasis to the liver may cause a rash. Other nonspecific systemic symptoms of metastatic breast cancer can include fatigue, weight loss, and poor appetite - but these can also be caused by medication, depression, stress, other diseases - or just life.

And therein lies the rub for us early-stage survivors: every cough and ache and pain could be the first sign that our cancer is back. How do we know? How can we not worry?

Last December I had a routine ultrasound that showed that my lymph nodes were enlarged. Soon after, I came down with pneumonia. Six weeks later, I got a virulent eye infection. Then bronchitis, which put me out if commission for more than a week. Then bronchitis again. Through all this, the doctors, the tests, the antibiotics, and so many days spent in bed convalescing, the warrior princess feeling completely left me. And I couldn't help wondering if all these illnesses were actually symptoms of a recurrence.

There is absolutely no scientific basis for that concern. All my tests - including three biopsies, a PET/CT scan, and blood tests for cancer biomarkers - came back negative for cancer. My oncologist, while not dismissive, is certainly not panicked; she is quite convinced at this point that it is not cancer that is causing my recent health issues. And most important, with each illness, I have eventually recovered. But it's not always easy to be rational. As a friend from my support group put it, after what we've been through, we can create a cancer diagnosis in our heads from a hangnail.

That's why I write this, even though I know it is not inspirational. I think it's extremely important for us survivors - and those around us - to understand the threat that we are living with and to know that it's perfectly reasonable to be afraid. It's extremely important to acknowledge that our heightened sense of mortality is not hypochondria or neurosis. It's simply a logical response to the reality of being a post-treatment early-stage breast cancer survivor. 

The threat of recurrence will always be with me. The key, I now believe, is not to conquer cancer, but rather to move through it - less warrior, more Buddha.