Recently, when a friend shared a post I’d written for AdvancedBreastCancer.net on social media, there were a few rather strident responses arguing that Stage IV Metastatic Breast Cancer (MBC) isn’t terminal because that label only applies when a medical professional certifies that a person has six (6) months or less to live or when someone has transitioned to hospice (same criteria). Ironic that this terminology wasn’t actually the point of the article I’d written, but I digress. I’m always a little surprised when there are objections to terms I’ve become accustomed to using after researching applicability carefully. It is a good time to review, though, since I always want to be using the right/precise terminology.
As I’ve written and said many times before, words really matter. I try to be as precise as possible when describing or labeling something I’m experiencing, as with most things in my life. My husband often bemoans the fact that we’re raising two very precocious and precise children as well as teaching them to negotiate effectively — it certainly makes parenting quite interesting!
Let’s start with Merriam-Webster’s definition:
Definition of terminal
1a(1): leading ultimately to death : FATAL terminal cancer
(2): approaching or close to death : being in the final stages of a fatal disease; a terminal patient
(3): of or relating to patients with a terminal illness; terminal care
b: of, relating to, or occurring in a term or each term; terminal payments
c: extremely or hopelessly severe; terminal boredomhttps://www.merriam-webster.com/dictionary/terminal
The definition goes on to include several other permutations of the word terminal, but these are the pertinent elements of how I was using the term. As an adjective, the word terminal describes the status (i.e., incurable) of the cancer that is Stage IV. Let me take two steps back and remind everyone that I write as a breast cancer patient. Breast cancer forms solid tumors and is not considered a cancer of the blood. There are major differences between the potential curability or incurability of different types of cancer and terms that apply to blood cancers (like remission) often don’t apply to solid tumor cancers (the equivalent is No Evidence of Disease (NED) or No Evidence of Active Disease (NEAD)).
When we learned that I wasn’t actually Stage II, but had actually been Stage IV from the beginning in June of 2017, my medical oncologist at the time something like this: “When you were Stage II, we talked about cancer being an experience to get through and that you will die of something else, now that you are Stage IV, the cancer in your body will kill you.” He went on to discuss some of the statistics about life expectancy, carefully navigating that line between accurate information and some scary truths. One of the things we discussed was that treatment for Stage IV MBC isn’t meant to be curative, but would be keeping the cancer in check until we couldn’t and managing the side effects of the cancer and cancer treatments. He made a specific point to say several times that MBC is incurable at that time.
There are other diseases, like diabetes, that are also incurable; however, diabetes is a disease that can be managed very well and if properly managed, does not result in death. In contrast Stage IV MBC can be managed perfectly but the cancer’s ability to mutate means that it doesn’t matter how well we manage it, the diagnosis always ends in death, whether from the cancer itself or the treatments. Yes, many people with MBC are living longer and fuller lives because of treatment advances, but we are still losing them when the cancer mutates around everything we have to throw at it.
At some point, for everyone living with MBC, treating the cancer becomes untenable. Sometimes this is a physical issue where the body no longer tolerates available treatment or the available treatment would only hasten death or there truly aren’t available treatments. Sometimes, this is a psychological issue where a patient chooses to allow nature to take it’s course and only manage symptoms. I found this article from Cancer.net particularly helpful in explaining this transition. There is no way to know when any particular patient will reach this point — anecdotally, we often see that once the cancer has become uncontrollable, the descent to death happens swiftly and most Stage IV MBC patients don’t spend much time in hospice.
To sum up … the goal of treatment for Stage IV MBC is to keep the cancer in check, as close to NED/NEAD as possible, while the diagnosis is incurable. At some point, the focus shifts from treating to keep the cancer in check and managing symptoms to just managing symptoms. Typically, this shift is when a patient entered hospice after a doctor has certified that that patient has only six (6) months to live.
I can see and understand that terminal has become a legal term of art since it is a necessary component of eligibility for hospice services. Medical Professionals and Health Care Workers have to be careful and precise with terminology since utilizing the word terminal verbally or in writing might trigger hospice services to get involved prematurely. Terminal is also a word with some serious negative connotations — who wants to be thinking along those lines?
From an advocacy/activism perspective, there are usually two ways to persuade people. One is to shock them out of a previously held belief and the second is repetition. Not only does terminal have shock value, it also helps to remind the audience of how serious the diagnosis is, how dire the need, why #StageIVNeedsMore, why it is vitally important when we say #Don’tIgnoreStageIV.
And here is my conclusion, I acknowledge and understand that there are differences of opinion on the use of the word terminal. There are reasonable and thoughtful people on both sides of this discussion. I can see some issues and pitfalls with the use of the word terminal, especially in a health care setting or by people who work in health care. There will always be people who relate to terminology in different ways for often very different reasons and I acknowledge the existential dread that accompanies this language.
I am going to continue to describe Stage IV Metastatic Breast Cancer as terminal. I believe, as a patient living with this diagnosis and an advocate/activist, that the benefits outweigh the risks for those of us who desire to get the attention of those in power and disrupt the status quo. It is my belief, based on my experiences and those of my friends also living with this diagnosis, that the urgency necessary to treat us as valuable human beings with dignity and to ensure that the necessary medication is available to keep all of us alive long enough to find a cure is missing in the macro-sense. Certainly there are amazing people focused on this issue for their entire careers and I’ve met some of them, enough of them to have hope for the future. Certainly the needle has been moving over time in the right direction, enough to give me some hope as well.
But we need urgency by the entire system.
We need administrators and hospital programs to ensure that we are treated with a different level of care because mistakes could literally kill us. Delays in treatment or in addressing side effects could kill us. So many things can disrupt what is often a delicate balance of killing the cancer cells and yet keeping the host alive. We need administrators and hospital programs to care for those of us who are metastatic very differently than those with early stage cancer because it is a marathon, not a sprint.
And terminal describes the cancer in my body. It will be the end of me someday. All I can do/say is #NotToday.