I vividly remember the moment I was diagnosed with cancer. The tone of the news was cold, faceless, and felt careless. There was none of the bedside manner or patient-centered communication I had learned about in medical school. It was also abrupt: I felt immediately like I had the wind knocked out of me. There was no physician around to let me know next steps, no social worker to support me or my family members, no clear idea of what the future would hold. This is what happens when you get diagnosed with cancer through an app on your cell phone.
I was in the passenger seat driving home with my partner when my phone started buzzing loudly - it was my health app alerting me I had a test result waiting to be read. After weeks of concerning symptoms I had been fearing the worst, but was in my early 30s and completely unprepared to open the app and read the x-ray results that had been released directly to me. I hadn’t even seen a doctor yet or been examined, but the x-ray I had gotten earlier that day suggested I had a large tumor in my chest. It didn’t say much more, didn’t leave a number to call for more information, and certainly didn’t make me feel safe and supported. Despite being a doctor myself and being well-versed in navigating healthcare, the next few days were a total blur of being terrified and seeking answers.
As a practicing physician, I’ve had to grapple with the reality that the very system that is set up to care for patients can sometimes do the most harm. The trauma of this moment shows up every time I interact electronically with my medical team. Something as benign as getting lab results will make my heart race. The emails I get from the clinic following a visit asking me to fill out a satisfaction survey give me anxiety. These are just a few examples - I’m now nearly three years out from my initial diagnosis, in remission from my cancer, and yet so many parts of survivorship - being in the clinic, getting blood draws, meeting new doctors and having to repeat my story, can easily resurface the traumatic parts of this experience.
Without being properly addressed, medical trauma can lead to issues with mental health, avoidance and delays related to medical care. If the very system that is supposed to make you feel safe can make you feel insecure and anxious, this can compound the already challenging experience of navigating life as a cancer survivor. So what can patients and physicians do about this? My firsthand experiences as a patient have taught me that principles of trauma-informed care should become the standard for cancer survivors.
Trauma-informed care is a framework of delivering medical care that takes into the account the degree of trauma that accompanies serious illness. The approach acknowledges the unique shared experiences and subsequent needs of certain patient populations. When it comes to cancer, traumatic experiences can occur during diagnosis, treatment, or remission. Trauma-informed care can be used at every step of the way to support people through this journey. While it might not be possible to get every member of your care team to adopt these models, there are things you can do as a cancer survivor to receive trauma informed care.
I have put together several strategies for my own care and from my community of survivor friends that have helped significantly:
- If you have scanxiety or fear regarding receiving information related to your medical tests, try to avoid scheduling scans, bloodwork, or any type of testing on a Friday. The weekend will hold things up, and it’s harder to get a hold of your care team over the weekend if you need to communicate.
- Request that your care providers do not release medical results in patient-facing health portals without calling first, or setting up a visit to discuss your medical data. This will allow you the benefit of being able to ask questions and understand your health information with the guidance of your medical team.
- If physically being in the doctor’s office gives you anxiety or fear, ask your care team what visits might be possible to do virtually. There are ways to monitor things like blood pressure and other vitals from home, and it might not be necessary to get your medical care in person for each and every visit.
- Get in the habit of asking your care team what the risks, benefits, and alternatives are to any medical decision. Being informed and confident in your ability to guide your own care can help with some of the feelings of lack of control that cancer can create.
- If you find yourself experiencing symptoms of PTSD including excessive worry, flashbacks, nightmare, irritability or hyper-vigilance, it’s important to establish care with a mental health provider. Providers trained in acceptance and commitment therapy, cognitive behavioral therapy, or who have experience with survivorship can be incredibly helpful. And even if you aren’t experiencing any of the above, I cannot emphasize enough the importance of mental health support. It’s been a game changer for me, and in my opinion, should be standard of care for cancer survivors.
- Figure out what coping skill or technique is most helpful for you when navigating stressful medical interactions. Some suggestions include breathing exercises (link to our box breathing), playing your favorite music, or meditating. Having this tool well developed and ready to deploy at any minute can help significantly with unpredictable moments of stress.
Taken together, for many people the experience of getting diagnosed and treated for cancer is a medical trauma and should be recognized and treated like any other traumatic experience. And not just for survivors- this can also be the case for the people around you including family members, caregivers, and co-survivors. While some degree of fear or anxiety might persist, when it comes to our healthcare there are things we can do to interact in healthy, sustainable ways with our care teams and the medical system. If there are strategies you have found helpful to reduce the stress and re-traumatization of your own medical care, as always, we’d love to hear them. While we can’t fix the entire model of healthcare delivery, we can figure out ways to get the care we need in ways that feel safe and sustainable to us as survivors.
