The Problem With the Standard of Care After Breast Cancer Treatment Ends

Lately I’ve been reflecting on my cancer journey and some of my experiences that surprised me. As a survivor of triple-negative breast cancer, one thing I was very surprised by was the emotions and experiences that hit at what felt like the abrupt end of care following the end of treatment. As much as the cancer journey was a fall off of a precipice, the transition period following treatment had its own free fall moments. Before my surgery and months of chemotherapy and radiotherapy, I had various moments of “education” given by my doctors, nurses, and medical technicians, each of which served to inform and prepare me as best as possible for what was to come: the initial diagnosis “talk,” “chemo class,” radiation mapping, etc. I also had regular appointments with my various oncologists and an open phone line to get advice from my assigned nurse. I had the information provided from the results of various scans and tests to find and diagnose the cancer and to plan the treatment as well. Additionally, I read a lot online in popular and medical-academic sources about my cancer and the complexities of the treatments I faced, and I joined social media-based support groups to grow my information base with experiential knowledge from the “trenches.” Like many people deep in the cancer journey, I clung to this large trove of information to help ground myself in the midst of difficult and complex news and treatments.

Despite all of this searching and access to information, I was not fully prepared for the strangeness of what happens when treatment ends. A lot of the focus of my medical team at the end of my treatment was on the physical recovery in the year or so that follows treatment, which is a challenge, but one for which information and guidance is often available. Yet, my medical team didn’t really mention the psychological transition that follows the end of treatment. The online sources, thankfully, introduced me to some of the more psychological and socio-cultural elements of post-cancer life, like the phenomenon of “scanxiety.”

One psychological phenomenon I noticed I shared with many of my fellow breast cancer survivors I spoke with was the lingering anxiety that the cancer wasn’t actually gone. Because for a share of breast cancer survivors, often no end of treatment full-body scans (MRI, bone scan, PET scan) to rule-out residual or recurring cancer outside the breast (metastatic spread) are provided. Six month or yearly mammograms for those with breast-conserving surgery are the standard of care, but interestingly, ultrasounds, which can be more sensitive in detecting cancer — especially in those with dense breasts that can obscure tumors — are not. This is not the case for every breast cancer survivor, especially those with advanced cancer or those that had a mastectomy, but for many it is a real state of affairs.

The strength and continual lingering of this sort of “no-scan-xiety” more than a year after treatment has perhaps surprised me the most about my post-cancer transition. Because I had surgery first, there wasn’t an “evidence-based” way to gauge whether the chemo was effective against my cancer by testing for a shrinking tumor, and because I had some evidence of spread of my cancer, the thought of metastatic spread beyond my breasts is always in the back of my mind. Even with “clear” mammograms—though I have dense breasts which means tumors can be obscured and missed, which is another conversation for a later date — especially since a full-body scan is off the table as an option because it is deemed “unnecessary.” I’m also leaving the discussion of the relationship between “evidence-based medicine” and “insurance-driven medicine” for a later conversation — but it is important as these tests are expensive.

As I understand it given my social science background, the justification for the absence of post-treatment scans lies squarely in the “evidence-based medicine” framework of our current medical system. The popular and academic discussions around the evidence-based medicine framework are huge, complex, and varied, and I do not see myself as an expert in the area at all. But for my purposes of my musings here, I want to focus on the fact that this framework seems to focus medical care most centrally around (ironically in this case) medical testing and then also medical research. As a scientist myself, I truly understand the desire—and need—to focus medicine in this way. However, I will argue here that restricting the focus of medical care solely to this framework is problematic, in part because the framework defines “health” in a severely limited way: mainly in terms of the results — results of medical testing and treatment and of medical research.

Can you see what is missing in this definition of health? In this system, all three of my oncologists are justified in dismissing my concerns about the lack of post-treatment scans for residual or metastatic cancer, because medical research on the topic, as I was told and as I understand it, finds no benefit of post-treatment scans for predicting spread or recurrence. Again, in my understanding, this means that statistically there is little to no difference in having a post-treatment scan versus not having one in determining who will have a recurrence of their cancer after treatment. This is scientific evidence — in the form of clear statistical likelihood — that having a post-treatment scan doesn’t, in a sense, matter because it doesn’t change statistical outcomes.

As the American Cancer society puts it: “Other tests such as blood tests and imaging tests (like bone scans, x-rays, or CT or PET scans) are not a standard part of follow-up for most women who’ve been treated for breast cancer, because they haven’t been shown to help them live longer. But one or more of these tests might be done if you have symptoms or physical exam findings that suggest that the cancer might have come back.”

But why doesn’t this knowledge alleviate my “no-scan-xiety”? I’m a scientist, shouldn’t I find some sort of comfort in these results of important medical research? Maybe.

But for me, the problem becomes that the complexity of my health as a full human being is reduced to statistical likelihoods, and what is erased from this definition of health is both my mental health and its relationship to my quality of life. In my following arguments I’m not discounting the potential health effects of repeated full-body scans of various types at all — that does need to be a consideration in deciding if a scan should be completed. I’m also not discounting the fact that full-body scans can and will miss smaller areas of cancer and thus aren’t definitive in gauging recurrence or spread. However, imagine the peace of mind that could result for affected cancer survivors if their “no-scan-xiety” could be at least partially and imperfectly alleviated with an (appropriate) full-body scan post-treatment (and perhaps even as regular and appropriate intervals)? Couldn’t a survivor’s mental health — an important aspect of their health — and quality of life potentially improve with the knowledge that such a scan could provide? And if residual cancer remains or metastatic spread has occurred, isn’t that important to know, both for the patient and health care provider? Either way, with a full-body scan the “black box” of “no-scan-xiety” can be filled with some information instead of none, whereas contemplating “statistical likelihood” leaves the box empty and the anxiety lingering. As we know, anxiety and fear — aspects of our mental health — can have huge effects on our quality of life and further affect our physical health as well. If your goal is to improve the health of cancer survivors in a comprehensive way, shouldn’t that focus include their mental health and quality of life, even when that means re-defining what makes a test “necessary”?

If you’re a cancer survivor experiencing “no-scan-xiety” like me, please know you are not alone. And please reach out to the very skilled counselors and support groups connected to your local cancer treatment centers and in your community, as they have many tools at their disposal to help not just in dealing with cancer treatment, but also the transition period following the end of treatment. You don’t need to go through that transition, or any “scanxiety” or “no-scan-xiety,” alone. If you’re a medical professional involved in the research or treatment of cancer, maybe consider extending your definitions of “health” and of “necessary testing.” I could be wrong about how full-body scans affect mental health and quality of life post-treatment, but I would like to see some scientific evidence either way.