When I was newly diagnosed with breast cancer, many people who have been through this wringer said to me, “Welcome to the club that you never wanted to join.” And in doing so, they may as well have said, “We’re here for you; we see you; we understand your pain and fear and anxiety.” But the truth is that there is another club within the breast cancer club that people don’t like to talk about or even acknowledge, and that is the club that I am in, the club for those diagnosed with Metastatic Breast Cancer (MBC), or Stage IV Breast Cancer. MBC refers to breast cancer that has spread beyond the breast and lymph nodes, it is the only form of breast cancer that is life-threatening, and it is incurable. It bears repeating: Metastatic Breast Cancer is the only form of breast cancer that is life-threatening. A docile tumor can stay in the breast for your entire life and not cause you trouble, but the aggressive, cagey tumors that spread to bones, lung, liver, or brain are the ones that kill.

It came out of the blue; I didn’t even know that you could be diagnosed with Stage IV cancer with no prior history of breast cancer.  What’s more, I had no family history with the disease, and generally had no lifestyle or risk factors to mark me as someone who should be on guard against breast cancer. The diagnosis came as a surreal joke, but the truth is that the majority of those diagnosed with breast cancer have no known risk factors. So when the Breast Cancer Awareness Month campaigns rolled around last October, with its ubiquitous advertisements and pink ribbons, I was feeling raw and shell-shocked in the way that you do for the first 1 or 60 months after diagnosis.

That’s when I encountered the bus. I traveled the same route as the bus when I picked my kids up from school each day. Most days in October I trailed behind the bus staring up at its large, pink advertisement plastered across the back that went something like, “Even young women can get breast cancer. Check your breasts regularly. Early detection = cure.” Screw you, bus.

I had checked my breasts regularly, had even found the lumps that would be diagnosed malignant, and had found them early enough that in an initial consultation, a surgeon told me that my chances of surviving were very good. That was before the CT scan that found suspicious lesions in my liver, lesions that would prove to be malignant, that would signal that my cancer was no longer considered curable. I realized with a sense of shame that I would never be a “survivor” in the sense that I would go through the breast cancer experience and come out on the other side.

For the 6-10% of women whose breast cancer is metastatic at initial diagnosis, there is no hope of getting through the experience, just of persisting within it. It doesn’t matter if you find it “early,” as some breast cancers are so aggressive that they metastasize before they are detectable.  Some would claim that you can be a “survivor” while living with breast cancer, but that seems disingenuous to me, as our doctors tell us that we will never have a life after cancer. Women who have been diagnosed and treated for breast cancer also face a risk of developing MBC. In total, about 30% of breast cancer patients will develop MBC.

Given that MBC is the most dangerous form of breast cancer, you would think that there would be a lot of research on it, wouldn’t you? You would be wrong. According the Metastatic Breast Cancer Network, only 7% of breast cancer funding has gone to studying MBC. The Global Status of Advanced/Metastatic Breast Cancer’s 2016 report found that, similarly, over the past decade only 7% of scientific papers on breast cancer related specifically to MBC.  Furthermore, while survival rates for early stage breast cancer have made some gains in the past decade, survival rates for MBC patients have remained about the same. The upshot is that while breast cancer itself has a fairly high profile–judging by the number of pink ribbons I see, as well as the number of fund-raising emails I get every October—MBC is both under-funded and under-studied.

How has this happened? For years we embraced the idea that increased screening, vigilance, and early treatment of all types of cancers would result in better survival for the population overall. As a result, doctors found and treated more cancers, including cancers that did not need to be treated. More recently, it is becoming apparent that we need to understand why and how cancer metastasizes if we are to develop effective treatments for all patients.

And there’s a darker side to this problem. We need to ask the question, is it possible that early stage breast cancer gets more research funding because it affects a larger population, thus offering a larger market for new drugs? Or is it simply a more effective marketing tool, to tell potential donors that by giving money to efforts to detect and treat breast cancer early, they can save lives? The book Pink Ribbons, Inc. by Samantha King argues that breast cancer fundraising campaigns have been predicated on providing an upbeat message promising survival for those who comply with breast cancer screening. This strategy has instituted a “tyranny of cheerfulness” over breast cancer patients, especially during the annual Pinktober awareness campaigns. There was little room in this narrative to talk about MBC.

The “early detection = cure” message is a cruel joke to members of the MBC community. How many nights did I lie awake wondering, if I had just found the suspicious lumps 3 or 4 months earlier, might I, then, be a “survivor”? That pink bus seemed to be suggesting that if I had just fulfilled my personal responsibilities…. Last October, one blogger, a woman who is at high risk of breast cancer due to carrying the BRCA1 gene, had the audacity to write, “My doctor told me that women who follow the rules don’t die from breast cancer.” Such statements put the blame squarely on patients for the spread of their cancer. To which I say, screw you and the bus that you rode in on.

It’s not fair to blame patients for their illness, especially when what is needed is more research and more focus on MBC. If you are receiving fundraising messages for Breast Cancer Awareness month, please ask yourself the questions: Is this fundraiser going to benefit all breast cancer patients or just those in the early stages of the disease? Is the message focused on early detection and treatment, or is it focused on responding to the needs of all, including the most imperiled? If you would like to donate to support breast cancer research, please consider giving to an organization that recognizes the need for more research and support for MBC patients.

On October 1, I took part in my local Run for the Cure event to mark Breast Cancer Awareness Month. Given my skepticism towards these efforts, I was not sure what to expect. But, as the old feminist adage goes, Sisterhood Is Powerful. Gathering with so many people of all ages marking their personal losses from breast cancer as well as their collective hope for a cure made me feel supported. Indeed, flawed as this movement may be, it has gone a long way towards making breast cancer a popular cause. There was a time when people would not even say the word “cancer,” and now I can be celebrated for living with it. (“You’re amazing!” one young volunteer enthused when I went to pick up my free pink t-shirt.) More importantly, as I walked the course with friends who have been through the breast cancer experience, it opened up a space for us to have conversations that would otherwise feel out of place. We talked about facing fear, the places where we find strength, and dealing with the limits of scientific knowledge.

This year that bus is back with a large pink ad, proclaiming, “Breast Cancer . . . not just a disease of older women,” next to a photograph of a vibrant young women, telling us she “was only 24 when she lost her life to breast cancer.” This acknowledgement that women die from breast cancer suggests that the message is moving in the right direction. Over the past year, I have learned that there is no shame in having MBC, and by telling my story I can change the collective understanding of breast cancer to include those of us living with the disease, not surviving.