How do you understand what your oncologist is saying when you’ve never heard any of these words before? More specifically, how do you make sense of these words being applied to you?
I certainly struggled to understand from the moment I heard “cancer.”
I made a lot of comprehension mistakes that hurt me during particularly vulnerable points in my care. One that still brings up all the emotions happened soon after I was told that my lung biopsy had returned with evidence of breast cancer. This information, which came as an awful, almost-physical blow to my husband and me, led to multiple additional tests and scans, a change from the early-stage clinical trial I had said “yes” to before I had officially been staged, and an even larger vocabulary I had to learn stat (to borrow a well-worn medical word).
I can still remember having to fill out a single-page form prior to another CT scan. It asked, “What is the reason for this test?” I answered with what my paperwork said: Restaging.
Restaging? I felt a surge of relief and hope. Could I be “restaged” from stage 4? Was my oncologist looking to see if I wasn’t actually stage 4?
This is the world I lived in. A world where I didn’t understand much of what was happening to me. I didn’t know the words to use with my doctor to get to the information I actually needed.
I misunderstood a lot.
I didn’t even know that “restaging” could mean anything other than what it sounded like to me: a chance to restage me from stage 4 to something else (such as somewhere between stage 0 and stage 3). I didn’t search the term online, though I wish I had because understanding what the term meant for me could have saved me from more psychological pain later.
I like this definition of restaging: “Restaging CT scans have the potential to impact management by identifying new distant metastases ...” from an article in the International Journal of Surgery about colorectal cancer — it is straightforward about the purpose when cancer has metastasized.
In this world where I was wandering around, trying hard to get my bearings but unable to even find the map, let alone read it, there was a lot of fear, anxiety and renewed hopelessness with each misunderstanding.
Though my confusion about what restaging meant is possibly an extreme case of failure to communicate, the necessity of learning cancer vocabulary is not reserved just to me. I spend a lot of time thinking about how patients and doctors talk to each other and how it often seems to me like we don’t have a large-enough shared vocabulary — a problem that is especially challenging for people with advanced cancer.
I like it when I see new resources for people diagnosed with metastatic breast cancer because I will never forget what it was like to be tossed into a world where I couldn’t navigate without hurting myself. This morning I came across a useful tool for anyone with metastatic breast cancer, but maybe especially those who are newly diagnosed.
The mBC Dictionary was compiled by breastcancer.org and Pfizer, and it includes the 20 most-common terms searched by people on the breastcancer.org metastatic breast cancer pages. The dictionary can be easily found and downloaded as a PDF.
“Restaging” isn’t included (thankfully it didn’t make the top 20 cut-off) but I have experienced confusion about many of these words over the course of my treatment, and they are often topics of disagreement in support groups. Finding concise definitions for phrases and words we all hear or see is so useful for patients unfamiliar to this serious diagnosis.
Will this dictionary expand into other areas (clinical trial terminology comes to mind)? I hope it does, because it’s impossible to underestimate the value of good communication and better understanding when it comes to living with cancer. I speak from experience.
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