“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. 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.
And now, Olivia Newton-John has died from MBC as well. I couldn’t help but notice that many news sources didn’t mention the cause of death being metastatic breast cancer. I also noticed some confusing reports about her three “bouts” with cancer. Of course, I don’t claim to know the details about her cancer, but it like sounds like she experienced recurrences — not three separate cancer diagnoses.
Again, clarity matters.
To be clear, this post is not a criticism of these women or their loved ones. Actually, it’s not even about them. It’s about words, specifically, the words metastatic breast cance
You might want to read, Metastatic Breast Cancer: The Unspoken Words
Obviously, these 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, 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?
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 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.
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!
Ilene
Tuesday 1st of October 2019
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.
Nancy
Tuesday 1st of October 2019
Ilene, Love you too. And yes, let's.
Julia Barnickle
Monday 30th of September 2019
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.
Nancy
Monday 30th of September 2019
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.
Kathy Cook
Thursday 26th of September 2019
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.
Nancy
Thursday 26th of September 2019
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.
Nancy Westacott
Wednesday 25th of September 2019
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.
Nancy
Thursday 26th of September 2019
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.
Donna Funkhouser
Wednesday 25th of September 2019
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.
Nancy
Thursday 26th of September 2019
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.