Communication, Trust and Dignity in Metastatic Breast Cancer Care
Laura Snyder, on making treatment decisions and the importance of clear communication in care for metastatic breast cancer. Learn more about metastatic disease from our campaign, Beyond the Breast.
I was a 49-year-old triathlete in my prime when first diagnosed with stage IIIa invasive ductal carcinoma. It was ER-positive and HER2-positive. After a year of the usual poison/slash/burn I was deemed “cancer free, as far as we can know.” A short nine months later I felt a lump in my neck and was quickly diagnosed with breast cancer that had metastasized to my lungs, liver, and mediastinal and supraclavicular lymph nodes. My breast cancer was officially beyond the breast.
I was treated with Taxotere, Herceptin, and Perjeta and enjoyed a year with no evidence of disease (NED) while continuing on Herceptin and Perjeta. But I wasn’t done yet. None of us metsters ever are. In the spring of this year I experienced some mild disorientation while doing flip turns during my regular swims. Yup. I learned I had brain mets, the furthest and scariest beyond the breastimaginable. My status right now is unknown. I’ve had whole brain radiation and am back on chemo (Xeloda) and HER2-targeted therapy (Tykerb), which are known to cross the blood brain barrier. I won’t know how I am until late September when I have a chest/abdomen/pelvis CT and a brain MRI.
This experience has been, among other things, an education. Making treatment decisions (or more accurately, accepting the recommendations of my trusted oncologist), and communicating with myriad healthcare providers has given me perspective on control and the lack thereof.
For me, I don’t so much make decisions about my treatment as make one big decision to continue to be treated in the hope of living as long as possible. My medical oncologist is brilliant, and driven by data. Since I trust him, I do what he recommends. I am uncomfortable in a position of deciding between or among treatment options when I know that there is data to support one modality or the other, and my oncologist knows a lot more than I do about it. I made personal decisions during my early stage treatment regarding whether to have a unilateral or bilateral mastectomy, and whether to reconstruct. Beyond that I felt I needed to put myself in the hands of experts, of which I am not one.
Maybe this makes me appear passive about my care. This is far from the truth. I am well educated on the studies, however small, that say that one treatment or other may work. And, I know that sometimes the standard of care works and sometimes it doesn’t. This is the most frustrating aspect of cancer care to me. NO ONE knows why some patients respond to treatment and some don’t. I imagine that being an oncologist is as frustrating as being a patient for this reason.
I’ve also gained a sometimes-bizarre education in communicating with healthcare providers and the health care bureaucracy. I don’t think my stories of what I call my “medical moments” are all that unique, nor do I believe that many of these amazing gaffes imply that I am getting bad care. I believe I’m getting excellent care, but I have a little advice for everyone from receptionists to radiation oncologists. The following all actually happened!
Please, primary care nurse, don’t leave the exam room to schedule my mammogram, as a quick peek at my chart will tell you that I don’t have any breasts.
Please, arrogant plastic surgeon, don’t tell me how easy and convenient it will be to have implants. The reality is they come with their own complications and a whole lot of discomfort, even three-and-a-half years out. Just tell the truth or say you don’t know.
Radiation oncologist, please just answer my questions even if they seem trite. Don’t tell me that when I should expect to lose my hair is “the least of my worries.” I am well aware that my 18 brain lesions are a bigger concern. Just give me the dignity of answering my questions.
Generally, office people: Please, please, please take the long road and help with scheduling scans and procedures without me having to be the lady that “calls all the time.” I know you are overworked but scanxiety and cancer anxiety are very real. You can go a long way to helping to alleviate some of it.
And in general, providers, PLEASE review my most current information before you talk to me. Don’t scare my husband and me by referring to a year-old scan from my initial mets diagnosis! We have the technology, people! Please prepare to walk into an exam room and talk to a patient.
The thing about being a cancer patient is that EVERY interaction we have is fraught with anxiety and second-guesses about its true meaning. Cancer levels us all into puddles of fear a lot of the time. Add to that cognitive difficulties as a result of chemotherapy (multiple regimens in my case) or say, whole brain radiation and it is a gloppy stew needing constant adjustments to the burner temp, the seasoning, the balance of ingredients. Poor communication like the above only feeds the fear beast. I know that’s not the intention in committing to caring for people.
If you work in health care, I’m telling you this in the hope that you will stop, breathe, and consider how a cancer patient might interpret your interaction. I do not want to silence you, or make you afraid you may not ever say anything right. We are all humans, and there is nothing easy about interacting with each other. Say that. If you are a patient, A.) keep it together and get to the root of what you want to know. Or, B.) burst into tears if someone has scared you or been insensitive. Both are appropriate responses to stress. If you choose B.), make sure to go back to A.) Persist. Pick your battles.
I am not battling cancer. I don’t believe in “battle language.” I am accepting treatment and hoping it gives me a longer life. My “battles” are for clear communication, maintaining trust in the experts I have chosen to help me, and importantly, for dignity as a cancer patient.
Get more insight from Laura in her blog, http://www.laurasnyderupdates.blogspot.com/