Chronic v. Terminal

There’s been several articles recently labeling Stage IV Metastatic Breast Cancer (MBC) as a chronic disease sponsored by and including various non profits. Ironically none of the articles I’ve seen provides justification or basis for this claim and none cite to medical doctors or scientific proof. Instead of actual evidence or attempting to explain, the articles I’ve seen merely make the statement and shockingly move on as if there is consensus.

As someone who has spent the better part of nine (9) years wrapping my head around the fact that I am living with terminal cancer, watching my friends struggle, enter hospice and die, attending funerals regularly, and continuing to support many others living with MBC, I am too well aware of how labels can negatively affect people like me. I already struggle to explain to healthy people in the government, in private insurance companies. and in so many different organizations what it means to live with MBC and that’s at least with the category clear, that MBC is terminal. No, there is no consensus on this harmful label/narrative.

Let me take two steps back and try to define the terms. First, let’s look at the term, “chronic:”

Chronic diseases are defined broadly as conditions that last 1 year or more and require ongoing medical attention or limit activities of daily living or both. (https://www.cdc.gov/chronic-disease/about/index.html)

For those people who live with diabetes or an auto-immune disorder, the treatment is ongoing, but there is no discussion about whether/when that diagnosis will end in death. Yes, the medications are often harmful to the rest of the body and there are often ongoing adjustments to protect various organs and improve the overall quality of life, but those adjustments are nothing like progression and changing lines of treatment. In the context of chronic conditions, there is limited threat to life or that an organ will suddenly shut down or that treatment will become so toxic that a person hopes for death to end that suffering. For most chronic conditions, so long as the person is consistent with treatment, the threat to life is minimal or none at all. There are some treatments for chronic conditions that require infusions, but this is not the norm overall.

People with chronic conditions are typically not facing a change in their life expectancy.

It is important to me to note that I am not belittling the weight of living with a chronic condition, it is not easy. I also realize that because I have an objective diagnosis, clearly visible on scans and in the affect on my body, I am often afforded different support, different respect and different reactions from the medical system than those living with less visible, chronic conditions. Having lived with chronic pain since my MBC diagnosis in 2017, migraines since I was very young, and supporting family members with chronic conditions, I am particularly sensitive to the difficulty people with chronic conditions face.

But we have to call a spade a spade. And wishful thinking does not lead to categorizing illness correctly.

Now, let’s look at the term, “terminal” in the context of cancer:

A terminal illness is any condition expected to end in death. Examples include some cancers, advanced heart disease and organ failure. Treatments aim to improve your comfort rather than cure the disease. (https://my.clevelandclinic.org/health/articles/terminal-illness)

An incurable/terminal illness is expected to end in death; not today, probably not tomorrow for most of us, but once there are no more available treatments, terminal cancer will end our lives. This is a very difficult thing to wrap your head around and I really do understand the pull towards a different label so that it feels “easier” to live with. At the same time, I see and experience what happens to those people who believe their diagnosis is chronic once the first or second progression happens and they face, perhaps for the first time, the dwindling list of available treatments. The people who then have to adjust to the reality, that MBC is clearly not chronic for the vast majority of us, struggle a great deal and often to a depth that is dangerous — delaying the struggle is not a kindness and doesn’t help with the ongoing experience, in fact, it erodes trust in the medical system.

I cannot say enough about how important it is to maintain trust in the doctor/patient relationship. Medical professionals who gloss over the seriousness of MBC or avoid talking about it aren’t helping their patients. And if there is a hint of not telling the truth, of wrong categorizing MBC, patients may never truly trust the very people helping to keep them alive again.

There is a very small number of people within the MBC community for whom MBC is a chronic disease. Some of these people are my dear friends. There are those in the MBC community who experience No Evidence of Disease (NED) or No Evidence of Active Disease (NEAD) for years, sometimes decades. These people are unicorns and we all want to be these people. Here’s the hard truth; the people who get to experience NED or NEAD for long periods of time, to the point where the label chronic begins to resonate fall into a very small category of those of us living with MBC. Taking the experiences of a precious few and extrapolating that to the entire likely 200,000+ of us worldwide (estimates because we’re not properly counted) is simply magical thinking.

Magical thinking … is the belief that unrelated events are causally connected despite the absence of any plausible causal link between them … (https://en.wikipedia.org/wiki/Magical_thinking)

As an attorney, I’ve assisted 100s of people living with MBC to obtain the few benefits afforded to us. Benefits like SSDI or private disability, life insurance payouts, discharging student loans, waiving interest or other penalties in order to access funds from retirement accounts and a few other things that make living with MBC just a little easier. It is already an uphill battle to explain MBC, to differentiate No Evidence of Disease (NED) from remission, and to ensure that we get the few benefits afforded to us by virtue of living with a terminal/incurable diagnosis. Labeling MBC as chronic will only mean that people with MBC will have an even more difficult time obtaining and keeping the few benefits afforded to us.

Using a label like chronic to reframe the experience of living with MBC is akin to sexualizing breast cancer (you can read more here: Sexualizing Breast Cancer – Everyone Loses). There are those marketing or branding campaigns that aim to raise awareness by being provocative, by starting the conversation, which is how some justify the harm done to the MBC Community. Any organization taking a position on whether a medical condition is chronic or not, without acknowledging the nuances, is delving into areas of public health and should take care they aren’t harming the very people they purport to serve.

For more about the harm of false hope based on magical thinking, here’s some other blog posts from me and others:

• Let’s Stop Calling Metastatic Breast Cancer “Chronic”, March, 2024
• Stockdale Paradox, February 2023
• Speaking Our Truth, September 2021

Bottom line? MBC is not yet a chronic disease and everyone needs to be careful when attempting to change how it is categorized without real scientific basis because harming those of us who are already carrying the weight of terminal cancer should be avoided.