My mother had bilateral mastectomies—five years apart. I vividly recall that shortly after she was first diagnosed, she called me into her room to show me the spot on her breast: no discernible lump—just a horizontal line masking the cancerous cells below. She wanted to alert me in case I ever saw something similar on my own body.
She/we were lucky: after the distressing surgeries, she needed no follow-up treatment and died at age 83 of heart failure.
Many women—and some men—are not so lucky. As October 1-31 has been deemed “Breast Cancer Awareness Month,” it seems to be a good time to discuss the disease that, after skin cancer, remains the most common cancer among women, affecting 1 in 8 in the US and hundreds of thousands worldwide.
And I have recently become aware of what life is like for women—including some very young women—living with metastatic breast cancer (MBC). I’m hoping to provide some insights into this aspect of the disease: it doesn’t get as much attention as what my mother had, which a surgeon at the time called “garden variety breast cancer.”
A Bit of Background
The CDC reports that about 250,000 women and 2,300 men are diagnosed with breast cancer in the US each year. Non-Hispanic white women are most often diagnosed, with Black women not far behind.
However, as is too often the case, Black women are more likely to die of the disease, and it is the leading cause of death among Hispanic women.
Diagnosis most frequently occurs in women in their 70s, and deaths are highest in women in their 80s. But 11% of women diagnosed with breast cancer are under age 50.
There has been a gradual reduction in the incidence in women over 50, according to the National Breast Cancer Foundation, possibly due to less use of hormone replacement therapy.
And a reduction in breast cancer deaths since 1990 has been documented, attributed to screening, early detection, and better treatment options, as researchers learn more about the nature of the various molecular and cell distinctions among breast cancer manifestations.
But a recent study found that the decline seemed to have slowed in the decade from 2008 to 2017.
Learning From Abigail
None of this information comes close to revealing what it’s like to be a much younger person living with metastatic breast cancer (MBC). I have learned a great deal about that particular hell from my treasured virtual friend Abigail Johnston, whose blog is titled “No Half Measures: Living Out Loud.”
Abigail was diagnosed with Stage IV MBC in 2017 at age 38. She was originally believed to have Stage II disease and was told that it could be managed and wouldn’t kill her.
When it was discovered that the cancer had spread to her bones before she’d even felt the lump in her breast, she received the Stage IV diagnosis, which is invariably fatal. Her two sons were not quite 2 and 4 at the time. She was informed that she had about three years to live, but fortunately recently passed that point.
Those of us who follow her blog rejoice with her when she receives encouraging test results and share her dismay when she suffers from treatment “side effucks” and medical personnel outrages. She is an easy person to admire and love.
Dynamo that she is, she keeps a rigorous schedule as an advocate for patients, an educator for both patients and the public, and a voice for those who are less willing or able to express the many sorrows, indignities, anxieties, fears, and needs that add extra burden to those with this dreadful disease.
Her blog posts are far-ranging and informative, inspirational, sometimes funny, always worth reading.
A former attorney, she founded a non-profit, Connect IV Legal Services, to put Stage IV MBC patients in touch with attorneys who will help them pro bono with financial/legal matters they may face.
The list of her organizational activities is long, and includes serving as a board member and a Parliamentarian for her local PTA.
From Abigail’s Daily Blog Posts
Since the October 1 beginning of Breast Cancer Awareness Month (BCAM), Abigail has been blogging daily or sharing posts from others about aspects of being a member of that club no one voluntarily joins—but which has, in fact, given life to a support community of women and men similarly affected that is remarkable in its depth, compassion, and dedication—and she is one of the reasons.
I’m including below some of the items gleaned from these posts.
Of particular note, October 13th was the only day of this “awareness” month dedicated to the more than 155,000 women and men who have metastatic breast cancer.
Abigail wrote a powerful essay about what it feels like to be:
“…the elephant in the room…By being vocal, we make lots of people uncomfortable. By asking that someone pay attention, we force others to be reminded of their own mortality.”
Though she understands the sentiment that leads people to “want to categorize breast cancer as ‘the easy cancer’” because MBC shows “the dark side,” she is simply asking for understanding…
“that this is my life, that MBC is real and it is entirely different from the other stages. That it WILL kill me. I won’t die of old age, I will die because of breast cancer.”
Since Abigail doesn’t live by half measures, her time on October 13th involved various public activities, including being featured in a live Zoom presentation, “Living With Breast Cancer—One Woman’s Story,” in which she spoke about “living with purpose” and shared information about research she’s learning with regard to mutations. That was from 7 to 8 pm.
After that, she appeared with friends and family at landmarks in Miami, near her home, that were lit up to raise awareness of MBC. This #LightupMBC campaign is an effort by METAvivor—an organization devoted to “metastatic breast cancer research, support, and awareness”—in conjunction with http:moorefightmoorestrong.com, an organization named after a young woman named Jessica Moore who was diagnosed at age 32 and died four years later. (Regrettably, the link doesn’t work.)
Landmarks in every US state and elsewhere in the world were lit up in green, teal, and pink to call attention to the too-often-overlooked women and men with MBC.
“Why Green, Pink, and Teal?”
The explanation is on the moorefightmoorestrong site, and it gets to a serious issue that’s been overlooked in the “pinkwashing” of the breast cancer campaigns most of us have become accustomed to seeing.
“The pink ribbon is well-known for representing the fight against breast cancer, but most of MBC patients feel that pink does not encapsulate their experience. Metastatic Breast Cancer may start in the breast, but its spread to vital organs makes the disease fatal.
“To highlight the uniqueness of the disease and show its commonality with other Stage IV cancers, METAvivor designed a base ribbon of green and teal to represent metastasis. Green represents the triumph of spring over winter, life over death, and symbolizes renewal, hope, and immortality while teal symbolizes healing and spirituality. The thin pink ribbon overlay signifies the metastatic cancer originated in the breast.”
Abigail provided her strong opinions about that “pinkwashing” in her October 1 blog post, questioning why the people who are dying get only one day’s attention during this month–and only 7-10% of the research funding.
“In my view, we should apply the principles of triage…—focus on those of us who are dying at a median rate of 2-3 years post-diagnosis rather than those who are at least 70% likely to end treatment and live a ‘normal’ life.”
“And yet, the focus is on those who’ve triumphed over the ‘easy’ cancer and touting the ‘easy’ testing (i.e., mammograms), which don’t even detect much/enough of the disease that murders my friends daily.
“Secondly, the pink ribbon is EVERYWHERE. On bananas, on yogurt, on beauty supplies, shirts, stamps, etc.
“Yet, if one queries those companies about how pasting that ribbon on everything helps those of us with breast cancer, the answer is usually extremely minimal, if at all. There are exceptions, but the usual answer I receive is pennies to selected charities for every dollar spent.
“Then those same charities often use the majority of those funds in administrative costs like salaries and “educational” campaigns, meaning very very very little gets to actual research funding, which again, is allocated to MBC at the rate of 7-10%.
“Also, many of the products that boast a pink ribbon actually are or contain elements that CAUSE CANCER.”
Abigail recommends that anyone who’s tempted to purchase a pink breast cancer symbol first query the retailer about how that money will be spent.
Other Items I’ve Learned From Abigail’s Series
The SEER database (Surveillance, Epidemiology, and End Results Program—-seer.cancer.gov) doesn’t count people with MBC accurately, Abigail says, so although it’s known that roughly 115 women and men die from MBC daily, it isn’t known how many are diagnosed.
“Whenever you see a notification that someone has died from breast cancer, the actual terminology should be ‘metastatic breast cancer’ or ‘ramifications of the treatment of metastatic breast cancer.’ The media gets this wrong over and over and over.
“Why is this important?
“Just like we don’t get counted correctly, the public is unaware of how fatal MBC really is, how many people are dying of it every day, and the focus of BCAM needs to be awareness about MBC. Yes, I know it’s important to do self exams and mammograms are good too; yet, none of that can prevent a person from developing MBC and MBC is 100% fatal.”
Another valuable piece of information involves participation in clinical trials.
It had been assumed that numbers of participants were low because people were reluctant to join trials. But The Fred Hutchinson Cancer Research Center did a study that pointed to another reason: of 9000 cancer patients in their study, more than half didn’t have a trial available to them. When trials were available, about half of those in the study did, in fact, participate.
[The National Breast Cancer Foundation Inc. website has a search tool in which anyone interested can fill out specifics about her/himself and be directed to available clinical trials.]
Abigail’s blog is filled with information like this, which is valuable for us all to know. Equally important, she offers insights into the personal and social needs that caring people can meet to truly help those affected in their daily lives, including even some advice about vocabulary.
“Language matters,” she writes, and then quotes a young woman named Adiba:
“Let’s talk Battle terminology. You always hear ‘She fought bravely…lost her battle to cancer, etc.’ Fact is most of us MBC patients actually hate hearing that as it makes us feel like failures. Like it’s our fault that treatment stopped working.”
Abigail recommends (emphasis mine):
“Before you use the same fight terminology that has become and stayed ‘mainstream,’ ask how the person with cancer is doing. Don’t take it on yourself to be a cheerleader or give them answers or solve any problems, just sit with them. LISTEN. And then listen some more. Less is more. Much less, please.”
Abigail’s posts are on her blog and also on the Connect IV website. They are always worth reading—whether you have breast cancer, care for someone who does, or simply care about making research inroads so that fewer and fewer people suffer and die too soon.
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