Let’s Stop Calling Metastatic Breast Cancer “Chronic”!

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Metastatic breast cancer (MBC) is breast cancer that has spread to distant organs. Most often this occurs in the bones, lungs, liver or brain, but metastasis can occur in other organs as well. 6-10% of new breast cancer cases are initially diagnosed as Stage IV, sometimes referred to as “de novo” metastatic disease.

Treatment for metastatic breast cancer is life long. There is no cure.

You might want to read, Stage 4 Breast Cancer, by Dr. Deanna Attai.

This is not to say MBC is not treatable. It is. But referring to MBC as chronic feels like marginalizing a diagnosis that still brings with it a pretty dismal prognosis.

So, what is a chronic disease?

There isn’t complete agreement, but it’s defined by the National Cancer Institute (NCI) as the following:

A disease or condition that usually lasts for 3 months or longer and may get worse over time. Chronic diseases tend to occur in older adults and can usually be controlled but not cured. The most common types of chronic disease are cancer, heart disease, stroke, diabetes, and arthritis.

Reality Check: May get worse. Seriously? This just does not fit when talking about MBC because it likely will get worse. And what exactly does “controlling” mean? With a five-year survival rate of 22% and a median survival rate of 3 years, can this really be considered controlling it?

I think not.

The Centers for Disease Control and Prevention (CDC) lists cancer (along with heart disease and diabetes) as chronic and offers this broad definition of a chronic disease:

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.

Again, it’s a broad definition. No fine print, so to speak. Therein lies the problem.

Adding to potential confusion, sometimes reference is made to chronic conditions such as hypertension and asthma. Use Your Words Carefully: What Is a Chronic Disease? delves into this topic pretty well.

Terms like progression, recurrence, partial remission, partial response, stable, no evidence of active disease (NEAD) and others get thrown around too. American Cancer Society talks about some of these here.

Maybe it’s all just semantics or word dissection, but referring to metastatic breast cancer as chronic doesn’t feel like full disclosure to me.

Why not?

Because it’s still a terminal diagnosis.

Does that sound harsh?

Well, a metastatic breast cancer diagnosis is harsh. It’s okay to say the word, terminal. Referring to it as chronic distorts reality.

Having a goal of one day calling and treating MBC as a chronic disease is a fine goal. But referring to it as such with a broad stroke today, now that’s a stretch. No, it’s a problem.

As the late Barbara Brenner wrote in an opinion piece on this topic titled, Treating breast cancer as a recurrent—not chronic—disease:

If a “chronic” disease is one that the public believes can be successfully managed by the person who is ill—without serious side effects from the treatments—clearly metastatic breast cancer is not a chronic disease. If metastatic breast cancer is ever to actually become a chronic disease, we will need far more progress in the treatment and improved quality of life for those who take these treatments.

And public perception matters.

When the ordinary person on the street hears the term “chronic”, he/she more than likely doesn’t think this equals terminal. He or she likely doesn’t realize the seriousness. This is both good and bad.

But this ambiguity is not helping those who are metastatic. Those with MBC are doing everything in their power to live for as long as they can with the best possible quality of life. With less public awareness there is likely less public support, fewer dollars being donated for research specific to MBC and ultimately, fewer lives are being saved.

So as always, truth matters. Sugarcoating bogs down progress.

Following her early-stage diagnosis in 2004, my mother suspected she was having recurrence issues in the fall of 2007. By Christmas Eve that same year, her metastatic breast cancer diagnosis was confirmed. By March 2008, she was dead.

Doesn’t sound very chronic does it?

Now, this is not to say we gotta be all doom and gloom. When a person receives a metastatic breast cancer diagnosis, it doesn’t mean there are no treatments. It doesn’t mean the future is completely bleak. It doesn’t mean a person cannot live a decent quality of life for an unforeseen amount of time.

For sure, there are some who live a long time with metastatic disease. After all, individuals are not statistics. Each person, each cancer’s biology, each situation is unique.

And, of course, there is hope. There is always hope. But we need hope that’s also reality based.

Acknowledging the reality of what a metastatic breast cancer diagnosis means doesn’t mean you are being negative. It doesn’t mean you are an angry person. (But it’s okay to be angry.) It won’t bring about an earlier death.

Acknowledging reality WILL, however, potentially bring more awareness, and the public is sorely in need of more awareness regarding what metastatic breast cancer is, what a diagnosis means and how badly more research specific to MBC is needed.

I wanted to include thoughts about calling MBC chronic from indivicuals who are presently living with MBC.

So, I asked a few online friends who are living with MBC, how do you feel about referring to MBC as chronic?

(Thank you to all who shared!)

Here’s what they had to say:

Advocate extraordinaire Dr. Kelly Shanahan said this:

Until the majority of people with a disease can be expected to live close to a normal lifespan with treatment, that disease cannot be called “chronic”.

And you can’t use an arbitrary number like 10 or 20 years because my friends diagnosed at 30 would still be dead at 50 if they lived 20 years – and that’s not a normal lifespan.

Fellow advocate Abigail Johnston who blogs at No Half Measures had this to say:

The definition of a chronic illness is one that does not affect the patient’s life expectancy. Metastatic breast cancer (MBC) still has a median life expectancy of 2-3 years. I was 38 when I was diagnosed. MBC will cut my life expectancy drastically short and that is not chronic.

Jo Taylor, founder of abcdiagnosis and METUPUK, shared these thoughts:

We do not have data and statistics by each breast cancer subtype so, we don’t know which breast cancer sub-types survive longer. Extended life expectancy has increased in some types due to some targeted therapies, but the current 2-3 year median life expectancy is NOT a chronic disease.  That’s a terminal disease. 

The statistics have not changed for over 30/40 years, so until ALL patients are living longer than 10/20 years from a MBC diagnosis then it is not chronic. Patients are still dying way too quickly from this incurable disease that kills people prematurely.

Susan Rhan, blogger at Stickit2Stage4 and president of METUP.org, shared her insights as well:

Its understandable some individuals living with MBC prefer to consider themselves to be “chronic” because they are stable or NED. Howthefuckever, it‘a very important that the public at large understand the correct narrative of MBC. It’s terminal.

Creating a false narrative is detrimental to all the progress that has been made and continues to be made. Advocates and activists have worked tirelessly to educate lawmakers, researchers, medical professionals and others that we are beyond early detection, prevention and awareness. We are cannot be discarded or forgotten.

Calling MBC chronic won’t enable us in gaining an influential voice to close the gap in understanding that breast cancer is a sneaky bitch. We won’t have people like Mia Sorvino laying on the Capitol lawn in DC in protest of the 116 men and women dying daily.

Bottom line – calling MBC “chronic” may help one’s individual perspective but in the end it’s irresponsible.

Linda, author and loyal reader of this blog, offered a different take:

I’ve never really considered it before (so it was good that you asked so I could clarify it in my mind). I looked up the word’s meaning, and then I remembered that if you apply for Disability, it actually helps to have a chronic, or end term, disease like Stage 4 breast cancer according to their classification. Isn’t that sad? 

When I applied and we got to the point where I had to tell the woman my cancer diagnosis, she typed it in the computer and went “Wow! That just moved your application to the expedited level!”

I’m not happy to be labeled Chronic or Stage 4, or MBC, but sometimes you need to use the tools available to you. I needed to be declared disabled to get out of a bad work situation, so I am not disappointed to be called chronic by the Social Security people.

Ilene Kaminsky, blogger at The Cancer Bus, responded with this:

Metastatic Cancer is terminal. The end of the line is death – 100% of those with terminal metastatic breast cancer or stage 4 will die. Not so with most in stage 0-3. I wish those of us diagnosed with stage 4 could call our illness chronic.

Terminal illness of any kind is also considered chronic and “chronic” describes symptoms rather than the disease. AIDS is now chronic rather than terminal. It’s not a death sentence like metastatic breast cancer. Some in the general population, remain unaware that the status of a person with AIDS shifted, thanks to research.

There is confusion with stage 4 cancer. People seem to think there’s remission and there’s “getting better”. Terminal has side effects from the disease and the therapies. That’s the most confusing part of all, I think.

Finally, I leave you with a few words from Martha taken from her recent CURE Magazine piece titled, ‘Chronic Metastatic Breast Cancer Is Not A Thing’:

The day we call call breast cancer “chronic” will be the day none of us have to fear opening up our emails or checking into social media and finding yet another breast cancer death of someone we love.

Amen to that.

So, let’s stop calling MBC chronic.

Clearly, it is not.

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What is YOUR opinion regarding calling MBC “chronic” vs terminal?

Do you have metastatic breast cancer, or do you know someone who does/did?

Let's Stop Calling #MBC Chronic! #breastcancer #metataticbreastcancer #advocacy #womenshealth #research #cancer #stage4

The post Let’s Stop Calling Metastatic Breast Cancer “Chronic”! appeared first on Nancy's Point.