I can't say that I gave the word "chronic" much thought before I was diagnosed with stage IV metastatic breast cancer (MBC). To my healthy person's mind at the time, chronic was a word for people who didn't take good care of themselves - yes, I was THAT healthy person before I received my comeuppance in 2017.
I'd never really been around anyone with a chronic illness other than the few colleagues I had with controlled diabetes and, frankly, as a healthy person, I didn't have to think about it much.
After being diagnosed with MBC, the word chronic has taken on a whole host of other meanings, none of them positive and I've often felt very ambivalent about using the term. But why? Why is this term so divisive and why does it matter? I often have a visceral reaction to the word, especially in the context of MBC.
To my husband's (and others) regular chagrin, I'm an extremely literal person and I often overlook nuance, favoring the plain meaning of words. I'm sure this is partly due to my education and career as a lawyer, but that really only exacerbated the situation.
Additionally, I usually have my head in a book, so I also have picked up a rather extensive vocabulary. The English language is robust and full of a plethora of verbiage perfect for just about every circumstance.
I struggle to define MBC and the experience of living while people around me are dying every day.
Eventually succumbing to MBC
And this is my quibble with those who want to define MBC as chronic - while some people do get to live for years and decades, so many don't. While we don't have the most current statistics, since the data lags behind a bit, on average only approximately 28% of those living with MBC get to live more than five (5) years.
While there are those amazing people who live their best lives with MBC, it is still a disease that is fatal to every person who has it. Eventually, despite all of the tricks and targets of modern medicine, we are all worn down by cancer and the treatment and succumb to some part or all of it.1
And that doesn't add up to chronic for me.
The seen and unseen scars
I would definitely agree that the side effects from the medication and cancer or a combination thereof can become chronic. I, for instance, have chronic bursitis and arthritis and a bunch of other -itis' from all the inflammation in and around the surgical sites from the surgery where titanium rods were placed inside my femurs.
This inflammation and scar tissue and effect on the hard and soft tissues of my hips and thighs have become symptoms that I must manage all the time.
That's chronic. It's manageable. It affects my life and my activity levels, but I can still do those things, albeit with adjustments.
Cancer literally has no limit
MBC on the other hand is manageable right at this moment because the pesky mets are behaving themselves due to the medication I'm on; however, that's not a situation that will last. The cancer in my body and in the bodies of my fellow MBC-havers continues to mutate and grow because the mechanism for cancer cells to die as they should have been turned off. The cancer cells literally have no limit, no stopping point, no "off switch."
Doesn't sound chronic to me.
An additional issue with labeling MBC as chronic is that there are so many different subtypes and the experiences of those with MBC are very different depending on where the cancer has metastasized to outside the breast. For instance, I have bone-only mets. Outside of the potential shattering of my femurs, which was addressed with the titanium rods when I was initially diagnosed, the mets in my bones don't threaten my life on a regular basis. Those of us with bone-only mets do have a different average life expectancy than those with metastasis in other locations.
Living longer with MBC
Yes, people are living longer and longer with cancer generally. Some of us are living longer and longer with MBC. This is encouraging for those of us who have cancer already; at the same time, I worry that labeling MBC as chronic relegates it to the category of a disease that isn't too bad, isn't too scary, isn't something to worry about as much.
Akin to the pink ribbon movement, attempting to categorize MBC as chronic, I believe, is another way to minimize and dismiss the suffering of those of us with MBC and to further sideline the efforts of many to see MBC taken more seriously.
Is labeling MBC as chronic that bad?
To view one's disease as chronic can be extremely helpful from a mental health perspective. There is only so much a person can handle and everyone's capacity for anxiety and stress are different. In fact, stress is actually bad for the body generally and can affect the growth of cancer overall.
Viewed from this angle, it could make a person with this diagnosis feel better about the label, especially if everything is going well and the cancer is behaving itself. Some people get years and years of NED or No Evidence of Disease.
MBC is terminal, never chronic
As you can see, I'm still ambivalent about this label. And so, this is my conclusion for now:
- As an advocate, MBC will always be terminal, never chronic, since the language is powerful and resonates and can be used persuasively;
- As a human being who values preciseness and literal meaning, MBC will still be terminal in my mind; and
- As a mentor and patient leader/influencer, I will not interfere or call out those who view their own disease to be chronic if that helps them.
After all, reasonable minds can differ about a whole host of issues and this label is one that can be interpreted in multiple ways.
Now it's your turn - Do YOU think MBC is chronic? Why or why not?
Have you ever changed your treatment regimen because you were experiencing side effects?