Tracking Breast Cancer Recurrences

Since I have been deeply involved in Cancer World for more than forty years and have been living with breast cancer since 1993, I thought I was well informed about the landscape. However, I was shocked to read recent news and realize that, until now, there has been no central database of breast cancer recurrences. There have been multiple studies, and we have a lot of information from them, but there has not be a single place where numbers are gathered and maintained about how often breast cancer recurs.

Breast cancer advocates have been leading the pressure on SEER to include recurrence information.

All of us, and this is true for people with any kind of cancer, would like to know the facts about our recurrence rates. I realize as I type that “all of us” should probably read “most of us” since some people would prefer to avoid the numbers. In no way is this intended to be a criticism of that approach; we all should do whatever is most helpful in supporting our physical and mental good health.

The National Cancer Institute has just announced a new pilot project to collect this information; they do acknowledge that this is a long-term effort and likely will take years. Some of you are familiar with the NCI’s Surveillance, Epidemiology, and End Results (SEER) Program that was initiated in 1973. It collects and organizes information from cancer registries that include patient demographics, primary tumor site, tumor morphology, stage at diagnosis, and first treatment, and follow up on this information as possible. Since then, it has been the mother lode of all cancer data and used as a database for innumerable purposes. In the beginning, the focus was on the incidence of various types of cancer and survival. There have been changes over the years, but, until now, SEER has not included information about cancer recurrence.

Since recurrence is the biggest worry of most cancer patients, it is a major gap in knowledge to not have this data. Gathering this information is difficult as some patients are lost to follow up, and recurrences are found and documented in so many different ways and locations. Breast cancer advocates have been leading the pressure on SEER to include recurrence information. We need to know about local recurrences and about metastatic recurrences. In breast cancer, a local recurrence is more cancer in the breast and a metastatic recurrence is cancer that has spread somewhere else in the body. Local breast cancer recurrences are considered potentially curable, while metastatic/distant recurrences are treatable, not curable.

This all matters. This first project is limited to gathering the data about breast cancer, and I know that some people with other types of cancer will be frustrated by this decision. For years, I have talked with patients who are being treated for other cancers who are quite disturbed by all the emphasis on breast cancer. “Pink October” is a good example. Although there are other months that are designated for other cancers, I don’t think that the NFL wears teal sneakers in September to “honor” ovarian cancer. When I have had this conversation with someone, I always try to talk about the common cross findings in cancer research. Even if the funded goal is a question about breast cancer science, it is very likely that any discoveries will be relevant to other cancers. We know that many chemotherapy drugs that were initially used for one cancer are now standard treatment for many others, too.

Having more facts about the incidence and types of breast cancer recurrence will help us all. Although it can be painful information, it will likely encourage study of the most common sites and kinds of recurrence and may hasten new treatments. This information will gradually become available to clinicians and to patients. As always, individuals are entitled to ask or not to ask the difficult questions, and there is no single right answer as to how many numbers any one of us wants to know. It is up to you.