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#MBC is not a chronic condition #breastcancer #cancer #womenshealth

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

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

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

  1. About a year into my mbc diagnosis, my first line of treatment was working well. I was just one liver spot from being ned. When I talked with the radiologist about zapping that one spot, and how these targeted therapies could turn stage IV cancer into a chronic disease. What hope that gave me. But new spots showed up soon. And I’ve progressed pretty regularly since then. Maybe there will be a day when stage IV cancer is more treatable is a chronic illness. But we’re not there yet. And that hope he gave me was a false hope. False hope is not helpful. As brutal as honesty can be, it’s better than false hope. Thanks for raising the topic Nancy.

    1. Michele, I agree, we are not there yet. Honesty can indeed be brutal, but I so agree with you, it’s better than false hope. Thank you for taking time to share your thoughts on this important topic.

  2. Comprehensive and excellently put!! Thank you, Nancy, for amplifying the voices within the metastatic community who want the truth to be known, not just what might make us feel better in the moment. Having a terminal diagnosis is not for the faint of heart and continuing to lean in, to address, to talk about, the reality of that is inspiring to see in someone who is not herself metastatic. ❤️

    1. Abigail, Thank you for your kind words. I admit, sometimes it is hard to walk that line considering I am not metastatic. When am I saying too much? Or not enough? Having witnessed MBC up close through my mother’s experience as well as via the experiences of so many others I care about, inspires me to keep going, to keep speaking truth. As I wrote, sugarcoating bogs down progress. And progress is what we need regarding all things related to MBC. Thank you for reading and commenting too.

      1. I sympathise with irritation for a label of chronic when you know that unless something else gets you first the MBC will. I hope your oncologists made that clear when MBC was first diagnosed in your case.The point about hope though is that no-one knows how long they will live with the disease even though they know that it will always be there, even if Ned. I think the term terminal is reserved by professionals to ‘judged to be approaching the end of life’ meaning days, weeks or a few months only. There is no doubt that most women when first diagnosed with MBC don’t fit in that category either. I’m not sure it would be at all helpful to leave people wondering if that is her situation. I’m a recently retired UK oncologist (who completed treatment for primary BC a year ago). One of the most difficult things is people asking ‘so you’re clear of it now?’ And answering honestly when I knew at diagnosis that my survival chances were 40% at 5 years. Response to treatment has certainly raised my chances, as it will all those people with MBC who get a good response.
        Finally, in the UK there has been a push to consider the chronic (I.e. longer term) survival of cancer sufferers as an important period to focus on for anti-cancer and other palliative treatments to improve and maintain quality and duration of active life. That is a very positive attitude. If a cancer cannot be cured managing and minimising its effects is important.

        1. Sally, Just to clarify, I am not metastatic. This is why I wanted to be sure to include opinions from others who are in this post. Hope is a tricky thing. There is always hope, but false hope isn’t helpful. I agree with Susan’s comments in the post. If a person wishes to refer to herself as chronic, that’s fine. But in the world of advocacy, calling MBC chronic muddies the waters, makes people think MBC isn’t as serious as it is and doesn’t help to generate much needed research funding. Until median survival improves a lot and until treatments don’t cause horrendous impact on QOL, I can’t get behind the idea of calling MBC chronic. I very much agree that it is really important to focus on palliative treatment options and to encourage better management of side effects and QOL. Thank you for sharing your thoughts on this topic. My best to you.

  3. I don’t have MBC, but having any breast cancer diagnosis makes one aware of what the future could hold. What truly annoys me are the MBC drug commercials with their healthy, even athletic actresses who quite evidently aren’t experiencing the side effects the calm voice quickly mutters through. One even declares “we are the thrivers!”. What an unrealistic portrayal of women whose disease is often terminal in 2-3 years.

    How about commercials that show the reality of MBC and asks for donations to fund research to find a true way to end this killer of women.

    1. Jan, Don’t get me started on those ads! Some day I need to write about them and not just the cancer-related ones. I like your idea. Commercials showing reality and asking for donations to fund research. What a concept, right? Thank you for sharing.

  4. My stepmother was diagnosed Stage IV de novo and lived 14 years. That still meant she died at 47 years old. While my father is grateful for the time they did have together (they married when she was 6 years into her diagnosis) he was given a lot of false hope by her medical team. It allowed him to have a massive case of denial even when her symptoms were severe. This spring it will be six years since she died and his grief process has been negatively impacted by feelings of anger and regret. He often says that if he had been told how little time she had left that they would have made different decisions. (Example: she worked as a part-time school music director for as long as she could, which left very little time or energy for them to spend together.) She was also in a lot of denial about her prognosis and kept buying concert dresses (they are both musicians) for when she would “get better”. Experiencing all this second-hand has given me a vehement desire to face reality and know the worse in my own prognosis for Stage III. “Chronic” is, indeed, a weak and inaccurate term!

    1. mamamorgaine, Your comment is so important in that it illustrates so well that even if a person with mbc survives for 14 years like your stepmother, dying at age 47 means she did not live a normal life span. And your father being given false hope was just wrong. Hearing that his grief has been impacted by feelings of regret and anger, well, that makes it all the more sad. Denial can be a good tool sometimes, but honest dialogue etc is better in the long wrong. As you said, “chronic” is a weak and inaccurate term. I like how you put that. Thank you for sharing your valuable insights on this topic.

  5. Nancy thank you for writing such an important piece with stark honesty. There’s unfortunately a big difference between stage III & stage IV. The terminus, the end if the line is death. I found the story by mamomagaine above to be very indicative of my own situation because the confusion still exists even in those closest to us. Too many loved ones will live in regret of time not spent and things not experienced,.

    1. Ilene, You’re welcome. Thank you for contributing your thoughts for this post. I found mamamorgaine’s comments to be compelling and important too. Confusing loved ones about a prognosis isn’t helpful and only exasperates grief when that times comes. Thanks again for sharing.

  6. This is interesting to me as a woman living with Stage IV ovarian cancer, the daughter of a woman who died of a late metastatic recurrence of “early stage” breast cancer, and an activist in both the ovarian cancer and hereditary cancer communities.

    I see some noteworthy differences between the MBC and OC communities, with members of the latter trying hard to maintain hope by framing their cancer as a chronic and treatable (though not curable) condition. Perhaps this is in part because most with high grade serous OC are diagnosed at later stages, and we don’t have to fight for visibility and legitimacy in the OC world. There’s no reliable early detection for OC, so the early-detection-saves-lives hoopla so prevalent in breast cancer culture (and which discounts the reality of women with MBC) isn’t there for those of us with OC.

    In general, OC survivors dislike the “terminal” designation, seeing late-Stage OC as a condition that will probably involve being on and off chemo indefinitely. They foresee periods of, at best, having “no evidence of disease” (NED) or at least stable disease … and, at worst, being on chemo without letup for the rest of their lives.

    In that last case, as they run out of treatment options and disease shows up in new places and tumors get larger, the accumulated toxicities of multiple lines of treatment increase, and they find they don’t qualify for clinical trials because of exclusion criteria… they are more likely to see their condition as terminal.

    But those who of us who are still enjoying periods of being NED seem in general to resist defining themselves (ourselves) as terminal. After all, they’ll (we’ll) say, life itself is a terminal condition, and it’s everyone’s goal to live one that’s long and of the best achievable quality.

    Those of us who are part of communities of OC survivors online or in person are well aware of both the hope and grief that comes with an advanced OC diagnosis. We’re confronted with both every day. For every elated announcement on a Facebook or in-person support group about falling CA-125’s and being declared NED, there’s a somber update about a member entering hospice or passing in the last day or two. All of this is part of the reality of living with advanced-stage OC.

  7. Nancy, I’m so glad you wrote this post. I learned a lot from it and from others’ comments. I was ultimately dx’d as stage III – before surgery it was stage II but I had 1 too many lymph nodes involved to fit the earlier stage. Now, 3+ years post treatment I am NED and quite aware of the risks of recurrence. You’ve had a helpful influence on my thinking. Knowing that unclear language can obscure reality in harmful ways, I won’t think of or describe stage IV as chronic. Though if others wish to self-describe in that way, I respect their wish to do so.

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