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#MetastaticBreastCancer Let's Start Saying the Words #breastcancer #advocacy #breastcancerawareness

“Metastatic Breast Cancer” – Let’s Start Saying the Words!

With sadness, I read the news about the death of journalist, political commentator and author Cokie Roberts last week. And just days later when a reader shared the news about the death of actress and TV personality Suzanne Whang, I was saddened yet again.

Both women died from metastatic breast cancer. I know you join me in sending condolences to the families, friends and fans of these two amazing and inspiring women. They touched a lot of lives.

To be clear, this post is not a criticism of these two women or their loved ones. Actually, it’s not even about them. It’s about words, specifically, the words metastatic breast cancer.

You might want to read, Metastatic Breast Cancer: The Unspoken Words

Obviously, these two women aren’t the only well-known people to have shared about their cancer experiences, nor are theirs the only breast cancer deaths to have been reported on of late. However, their names have been in the news most recently, hence the focus on them in this particular post.

Celebrities and other well-known people sharing publicly about their illnesses brings awareness and hopefully more urgency to the need for further cancer research that will result in less harsh, more effective treatments and extended lives for anyone facing cancer.

When any well-known public figure dies from cancer, or whatever her/his illness was, and that information is shared publicly as well, that matters too. Doing so brings the possibility of bringing not just attention, but additional clarity to that particular illness.

When I read the news about the death of Cokie Roberts, that potential for clarity instead felt muddied up.

As a person who knows quite a lot about what a metastatic breast cancer diagnosis means for a person and her family, even I was confused by the headlines and the family statement that referred to the cause of Roberts’ death as complications from breast cancer.

What does that even mean?

Such a statement does not bring clarity.

Of course, I respect a family’s right to share what they choose about their dear one’s illness and/or death. Privacy is important. I get that. I do.

However, Cokie Roberts was a respected journalist and role model for many. Accuracy in reporting mattered to her. It should matter to all of us, including reporters reporting on her death.

Wouldn’t clarity in reporting about her death, in fact, be honoring her memory?

Roberts was diagnosed with early stage breast cancer in 2002. She talked publicly about her diagnosis touting mammograms and early detection. Early detection was/is supposed to be enough.

How many times have we all heard that?

Clearly, it was/is not. (Though it’s still important.)

To my knowledge, details about her cancer’s recurrence haven’t been widely shared. There was brief mention of the cancer coming back in a piece by Nina Totenberg, a colleague and friend of Roberts.

If Roberts chose to share about her early stage diagnosis, does not her family have some obligation to make a clearer statement about her cancer’s recurrence and her subsequent death from the same disease? (They still could.)

Perhaps responsibility to report more accurately and completely here primarily falls to news organizations.

Isn’t this their job?

Why the hesitancy to report that she died from metastatic breast cancer?

Again, she was an esteemed journalist. Facts and clarity should matter when reporting about her life and her death too.

Perhaps journalists need to become better informed, ask more focused questions and write more accurately about breast cancer (and other cancers) in general, but especially when writing about metastatic cancer of any kind. And when someone dies from it, that fact should be clearly stated as well, not muddied up.

Again, why is there hesitancy to use the words, metastatic breast cancer, anyway?

Let's start saying the words, #metastaticbreastcancer! #breastcancer #stage4 #advocacy #MBC

It was the same deal, at least in the articles I read, when Suzanne Whang’s death was reported. No mention of the word metastatic. Or Stage 4. Her partner chose the words, lost her 13-year battle with breast cancer, and while those are not words I would ever choose, it’s not my place to suggest words he should use.

My concern is with the words not spoken in the reporting.

Again, why leave out the words, metastatic breast cancer or stage 4, when sharing and/or reporting about a person’s diagnosis of metastatic breast cancer or a person’s death from the same?

Yes, the words, metastatic breast cancer, are scary. But as my friend Martha brilliantly wrote in a recent piece for Cure titled, A Few Thoughts On Olivia Newton-John:

Label it (mbc) correctly. Yes, privacy and gentleness matter. Olivia Newton-John didn’t use the term “metastatic cancer.” Yet, how else to describe a cancer that has spread outside of the primary site to the bones? Metastatic breast cancer is scary, but it is not so scary that it cannot be mentioned.

Amen to that.

You might want to read, Do We Expect Too Much from Celebrities Diagnosed with Cancer?

Clarity with words matters. When talking about such serious things, it matters even more.

How can we expect people to learn about and begin to understand the gravity of a metastatic breast cancer diagnosis if so many of us avoid even saying the words?

When someone dies from metastatic breast cancer, it’s time to use the words. It’s time to say the person died from metastatic breast cancer.

It’s time to bring clarity to what a diagnosis of metastatic breast cancer really means, and it’s time for all of us to start saying the words.

Only then, will we be more successful at directing resources specifically aimed at finding better treatments and outcomes for those living with it today and for those who will find themselves living with it tomorrow and ultimately, for preventing metastasis in the first place.

Image below via Metavivor Research and Support Inc.

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Why do you think there is such hesitancy to use the words, metastatic breast cancer?

Were you confused by the phrase, complications of breast cancer, in the reports on the death of Cokie Roberts?

If you like this post, please share it. Thank you!

Metastatic Breast Cancer, Let's Start Saying the Words! #breastcancer #advocacy #metastaticbreastcancer #breastcancerawareness

18 thoughts to ““Metastatic Breast Cancer” – Let’s Start Saying the Words!”

  1. I understand your viewpoint, Nancy, and know it is widely shared. Respectfully, I somewhat disagree with it.

    To begin with, while I doubt any of your readers lack clarity on MBC, I think it is perhaps expecting too much of the general public to fully grasp the point, no matter how many times we make it. In a world that is as profoundly ignorant of, and disinterested in, so many aspects of science, I see emphasis on MBC, as opposed to breast cancer, as a losing battle.

    In some senses, I think it’s good to refer to people dying of breast cancer as opposed to MBC. In my experience, too many people blithely assume that breast cancer is really pretty benign and that “nobody dies from breast cancer anymore.” While it’s happily true that great strides have been made in reducing mortality, all too many of us die from breast cancer. Even those of us who are not metastatic know that our current NED may not last, or may depend on continuing medication for years and years hoping that it will stave off recurrence, metastatic or otherwise.

    It is also possible for people with cancer of any type to die from complications as opposed to the cancer outright. Sometimes it’s complications of treatment, sometimes something else. I don’t see the use of that term as necessarily attempting to hide the reality of the situation.

    Finally, I suspect that in Cokie Robert’s case she probably had conversations with her family about her obituary. If this is what she wanted, or what her family thought she wanted, let’s give it a rest.

    I thoroughly understand that many will disagree with this. I understand that the public needs to understand that cancer spreads to many other organs and such spread is, 99% of the time, the actual cause of death. I wish that were made plain in public discussion of the disease. I think there’s room for nuance, however, as well as presenting information in a way that meets our audience where they are rather than where WE are.

    PS – re: breast cancer awareness month: I’m ignoring it. I’m not going to participate in any activities, I’m not going to gripe about it. Maybe if we downplay it some of the air will be sucked out of the tawdry pink campaigns. Well, one could hope.

    1. Julia, Thank you for sharing your insights on this. I agree, most of my readers do understand MBC and what a diagnosis means. The general public, not so much. Where I disagree with you (also respectfully), is that I don’t think it is expecting too much of the general public to grasp its meaning. I don’t see it as a losing battle. Maybe it’s the educator coming out in me. I say, the public needs to learn, needs to understand and this can only happen with open discussion about metastatic disease in general. I believe it’s up to those of us who are able to try to keep educating. Otherwise, how will things ever change regarding the dismal amount of $$ earmarked specifically for metastatic research? How will lives ever be saved? I do think the “Pink Machine” has done such a disservice with its incomplete messaging regarding everything about breast cancer for decades now. I also believe those in the public eye with this disease bear a greater responsibility once they have chosen to share about their diagnosis publicly. Are we entitled to details, of course not. But sharing openly about the cause of death from mbc might be the right thing to do when mammograms, early diagnosis, etc. have been touted. With a large platform, comes greater responsibility. As I mentioned, this post isn’t really about those two women at all. One more thing, much of the responsibility, as I mentioned in the post, lies with the reporting of these things. Again, thank you for sharing your thoughts and for “listening” to mine.

  2. Thank you for a thoughtful piece, Nancy. I believe it is important to use the word metastatic, for very many reasons including the fact that cancers less well-publicized and funded than breast cancer also metastasize and kill quickly or slowly. Knowing what metastasis is–and there are a lot of us from a variety of cancers–matters. I think any celebrity or public persona, or any person really, is entitled to his or her privacy. Yet when someone’s spoken out about early detection, mammograms, alternative treatments, etc etc (Cokie did not do all of this but other celebrities have) then it is even more important to make clear that those tests and treatments did not stop the progression of the disease, as was claimed, and it is important to name it correctly when reporting on a death.

    Raising money and encouraging funding of research into metastasis will become more understandable the more widespread the use of the word. The correct word.

    1. Martha, I agree completely with everything you say. Once a public person chooses to share publicly, her/his responsibility becomes greater. People need to hear and learn what the word metastatic means. I’m not sure I knew it before my mother’s diagnosis. I like to think I did, but I’m not so sure if that was the case. I love your words that I quoted in the post. Like I said, brilliantly written. Thank you for reading and commenting too.

      1. I’ve seen so much of this discussion this year. In thinking about it, my observation is that (as you said was your case) most people don’t know what the word means until it impacts them. While education is always good, I’m not sure what using the word ‘metastatic’ achieves that saying ‘died of breast cancer’ does not. Would it be any different meaning if we called it advanced breast cancer? More people would probably understand. IMO, the education that needs to occur is that breast cancer (and all the other cancers) can and do advance, and when they do, they kill. And that breast cancer kills so, so many, every year. To me, that’s the education that’s needed, rather than word definition. Just my two cents. Which may be colored by the fact that both my parents died from cancer that metastasized, and I knew the word from my earliest days, I don’t know.

        1. Cathy, I agree that saying so and so died from breast cancer would be far better than saying he/she died from complications. I think it is important to use the word “metastatic” because the public tends to think breast cancer isn’t such a big deal anymore. But your points are good ones. Thank you for sharing them, and I’m very sorry about your parents. You certainly understand the word far too well.

  3. I noticed right away the use of the words , died of complications to bc, rather than mbc or stage 4 .I don’t understand the hesitancy. Another thing I don’t understand is tying a color to each type of cancer. Are we supposed to keep track of which colors match each cancer….like a sad game? Why don’t we do this with other diseases? Like blue for a cold, green for bronchitis, red for pneumonia. Maybe I’m thinking too much but there are so many things I don’t understand that really disturb me about bc and mbc. I don’t think we need pink to remind us to be aware.

    1. Donna, Yeah, were you confused too? Maybe she died from an infection, had a fall that was related somehow and complications developed. That’s where my mind went anyway. I found it confusing. Even just saying she died from breast cancer would’ve been clearer IMO. Your point about the colors is so Donna. 🙂 Totally spot on. And no, we don’t need pink to remind us to be aware. Thanks so much for reading and chiming in here.

  4. I am in Ontario, Canada. I have had several discussions with Dr’s, 2 of them being Coroners. My conversations with both began regarding Canada’s Assisted Dying Policy and evolved into other topics, death from cancer being one of those topics.
    The conversations were in different places at different times but the information was basically the same. The chances of seeing the cause of death as “Cancer” on a Death Certificate in Ontario is rare. See, cancer is not what kills one. It is the catalyst. Cause of death is more than likely from organ failure which was brought on through cancer, whether it is the disease itself or complications arising from the disease – chemo and radiation are usually the culprit.
    As a survivor of a “rare” cancer I would really like to see more causes of death listed as the cancer – it is free “advertising” (if you want to call it that) for the type of cancer the person had. Recently Eddie Money, a performer from the 70’s and 80’s died from “heart issues”. He also had Stage 4 Esophageal Cancer. Did the EC cause the issue with his heart? Not likely in this case. He had heart surgery and it wasn’t till that issue his cancer was discovered.
    I usually figure out, by an obituary if cancer was involved, with more and more people opting for donations to a charity rather than flowers, if I see the Cancer Society or a cancer research foundation listed I am fairly confident that somehow cancer was involved.
    I hear MBC a lot, but I have noticed that not many other cancers are referred to as “metastatic X cancer.” For the most part, members of any of my groups who have mets from their original Esophageal Cancer diagnosis refer to this as a “recurrence now involving lungs, liver, brain” as these 3 are the more prominent of metastatic cancer from EC.

    1. Nancy, You make really good points. I hadn’t really thought about what is put on death certificates. And what is not. Also true that you don’t really hear about metastatic X cancer. Maybe my post should’ve been titled, let’s start saying the word “metastatic”. Regardless, same deal. People need to learn what metastatic means, but first they have to start hearing the word. Thanks so much for reading and sharing.

  5. I had the same thoughts reading about Cokie Roberts. It was confusing to see her death attributed to ‘complications’ – a vague term that could mean dozens of things. Did she have a heart attack from damage done by Adriamycin? Did she develop osteoporosis from aromatase inhibitors and then suffer a fracture that developed complications that eventually spiral into a fatality? Or did her cancer travel to another site, as it appears to have done, and eventually overwhelm that site and then her entire system? It’s hard to know, and I agree that given her profession of truth telling, the lack of transparency with the details of her terminal illness are a disservice to everyone.

    1. Kathy, As I mentioned, I felt confused too. My first thoughts were along the same lines as yours. Does it matter? I think it does. As I also mentioned in the post, at least some of that responsibility falls to those doing the reporting. Families can certainly share whatever they choose and are comfortable with. But Roberts did come out after her early diagnosis touting mammograms and early detection. Plus, she was a very public figure, though it seems, also a private person. That is a fine line to walk. Are we entitled to details about her death? Certainly not. But I wish her family would have been a little more forthright. Perhaps a lot of good could come from that. I definitely wish reporters and others would start using the word “metastatic” more often regarding any cancer. Becoming familiar with the word is the first step to the many others that are needed to bring change and ultimately, save more lives. Bottom line, these two women died from metastatic breast cancer, and their loved ones are grieving. Too many other families are doing the same. We can’t ever forget that. It’s my motivation for writing this post. Thank you for reading and commenting.

  6. Thank you for raising this point, Nancy – I agree with so many things that you and your readers have said. Here in the U.K. we tend to talk about “secondary” breast cancer, rather than “metastatic” – which adds to the confusion. Either way, I hadn’t heard of metastatic breast cancer before diagnosis and didn’t know what to look out for. As one reader said, any cancer can metastasise – and although not everyone is as closely connected to the world of cancer as we are, it’s always good to be informed.

    With regard to how the cause of someone’s death is announced, my understanding is that pneumonia is often the ultimate cause of death – and is therefore what gets written on the death certificate. That might explain the announcement, because most family members wouldn’t want to be seen to disagree with the doctor. However, I feel that the ultimate cause of death is a red herring – unless it’s totally unconnected with the ongoing illness – so it’s time we simplified matters and started calling things by their rightful name.

    1. Julia, I’ve noticed that in the UK it’s typically referred to as “secondary”. I wonder why the differing names, and you’re right, this only adds to the confusion. I hadn’t really thought about the death certificate part of all this. I suppose a coroner strives to be very specific, but in doing that, shouldn’t she/he also name whatever sort of cancer (or other condition) that was a major contributor to the cause of death? Just wondering. Thank you for reading and taking time to comment.

  7. I love you Nancy. You say it like it is and pull no punches. All I can say is here here and let’s use October’s pink to make a stink for MBC.

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