How Long Can You Live With Breast Cancer
Editor's notation: We're bringing back this slice from October 2022 for Metastatic Breast Cancer Awareness Solar day and to honor Jody Schoger, featured in the story. Schoger died of metastatic breast cancer in May. Want to learn more nearly MBC? Look for our tweets at the Northwest Metastatic Breast Cancer Briefing this Saturday at Fred Hutch.
A no-nonsense Texan of 60 years, Jody Schoger* has a very no-nonsense way of educating people almost her metastatic breast cancer.
"Someone volition say, 'When are you done with handling?' and I'll tell them, 'When I'grand dead,'" said Schoger, a author and cancer advocate who lives near Houston. "And so many people interpret survivorship as going beyond the lath. That everybody survives cancer now. But everybody does not survive cancer."
An estimated 155,000-plus women (and men) in the U.S. currently alive with "mets," or metastatic breast cancer. This type of cancer, also chosen stage four breast cancer, means the cancer has metastasized, or traveled, through the bloodstream to create tumors in the liver, lungs, brain, bones and/or other parts of the body. Between twenty and 30 percentage of women with early on stage breast cancer go on to develop metastatic illness. While treatable, metastatic chest cancer (MBC) cannot be cured. The five-yr survival charge per unit for stage 4 breast cancer is 22 percent; median survival is three years. Annually, the disease takes 40,000 lives.
As with primary breast cancer, treatment for phase four breast cancer, such every bit chemotherapy or radiations, can frequently exist harsh and unforgiving. But dealing with an incurable illness and the side furnishings of its treatment aren't the just burden MBC patients have to bear. Many likewise take to brainwash others about their disease, explaining over and over that no, the scans and blood tests and treatments will never come to end. No, the metastasized breast cancer in their lungs is neither lung cancer nor linked to smoking. No, staying positive and "just fighting hard" isn't going to shell back their belatedly-stage disease.
Equally one mets patient in this Living Beyond Chest Cancer video put information technology, "It's near similar having another job … My wish would be that the larger support circle would merely get it more."
A affliction no i 'gets'
Sadly, people don't "get" mets. In fact, a recent survey sponsored past Pfizer Oncology shows merely how misunderstood it is. Sixty percent of the ii,000 people surveyed knew piddling to nothing most MBC while 72 percent believed avant-garde breast cancer was curable as long every bit it was diagnosed early. Even more disheartening, a total 50 pct idea chest cancer progressed because patients either didn't take the right treatment or the right preventive measures.
"They've built an industry built on iv words — early detection equals cure — and that doesn't even brainstorm to define breast cancer," said Schoger, who helped found Breast Cancer Social Media, a virtual community for breast cancer patients, caregivers, surgeons, oncologists and others. "Women are blamed for the fate of bad biology."
The MBC Alliance, a consortium of 29 cancer organizations including the biggest names in chest cancer (think Avon, Komen, Susan Dear), addressed this lack of understanding and support equally well as what many patient advocates term the underfunding of MBC inquiry in a recently published landmark report.
"The dominance of the 'breast cancer survivor' identity masks the reality that patients treated for early phase chest cancer tin feel metastatic recurrence … [anywhere from] a few months [to] 20 years or more after initial diagnosis," the report states. "Public messaging nearly the 'cure' and survivorship is so pervasive that people diagnosed at stage 4 with MBC can exist stigmatized past the perception that they've failed to take care of themselves or undergo annual screening."
'Yous end upward on Mars'
Schoger's breast cancer — called invasive lobular carcinoma or ILC — came back 15 years after her original diagnosis and treatment.
"You recollect you're going to be flying to Chicago and land at O'Hare and y'all end up on Mars," she said of her April 2013 mets diagnosis. "It's not well known that yous tin have late recurrence. I even had an oncology nurse tell me 'Oh, y'all're cured' at eight years."
Schoger's doctors threw everything at her cancer after her initial diagnosis: mastectomy, chemotherapy, radiation and the daily medication tamoxifen, a form of hormone (or endocrine) therapy designed to cut off the food supply of her estrogen-receptor-positive (ER+) breast cancer.
But with MBC, the treatment philosophy is dissimilar.
"With principal cancer, they say, 'We're going to pull out all the big guns. We're going to put it in permanent remission,'" she said. "With MBC, y'all use as little as possible to get the biggest issue. Y'all attempt to stabilize the affliction."
For Schoger, that means a daily aromatase inhibitor (AI), which shuts downwardly estrogen production even farther to starve her cancer, along with a monthly infusion of Xgeva, a os strengthening amanuensis designed to gainsay the bone-zapping side effects of her AI treatment.
Schoger said she will remain on this therapy until it stops working. Then, similar most patients with MBC, she'll move on to something else.
"With metastasis, yous'll have times where you're responding well and your affliction is stable," she said. "And so there volition be a scary fourth dimension of progression. Then there volition be a new treatment, a time of stability once more, then — boom — progression. And information technology's all sort of going downwardly each fourth dimension that happens.
"None of us knows which manner our affliction is going to go," said Schoger, who has lost many friends to MBC. "Everybody hopes for the longest possible fourth dimension for the starting time therapy yous're given. But some women have ambitious disease and but blow through their therapies."
From 'cured' to phase 4
Others, like Teri Pollastro, a 54-twelvemonth-old stage 4 patient from Seattle, respond surprisingly well.
Diagnosed with early stage ductal carcinoma in situ (DCIS) in 1999, Pollastro underwent a mastectomy but did not receive chemotherapy, radiation or tamoxifen, since her cancer was ER negative.
"They used the C-word with me, they told me I was cured," she said. "Every fourth dimension I went back to my oncologist, he would roll his eyes at me when I had questions."
In 2003, Pollastro switched to Seattle Cancer Care Alliance where she saw Dr. Julie Gralow, a breast cancer oncologist and clinical researcher at Fred Hutchinson Cancer Inquiry Middle. Gralow discovered Pollastro's cancer had metastasized to her liver.
"My husband and I were in shock," said Pollastro of her mets diagnosis. "You don't go from being cured to stage four."
Pollastro went on Herceptin, a type of immunotherapy for women with HER2-positive metastatic breast cancer, and did half dozen months of chemotherapy.
"I felt meliorate right away with the handling," she said. "Merely the problem is, it stopped [working]. That's what you can wait with mets. And in that location'south always some residual cancer. And that starts percolating."
And forth with mets, she also had to deal with many misconceptions regarding her affliction.
"People don't empathise the give-and-take metastatic to begin with," she said. "They'd say, 'Oh at present you take liver cancer? How could that happen? Doesn't it go to the other chest first? And when I'd tell them I was phase 4, they'd give me pity or stay abroad or see me a yr subsequently and call up I was a ghost. They couldn't believe I was alive."
The Mercer Island, Washington, mother of ii, who ofttimes counsels newly diagnosed patients, sometimes fifty-fifty found it hard to relate to early stage breast cancer survivors.
"They're like, 'I did this' and 'I did that' and 'I beat cancer' and they think they're going to exist fine and I think, 'Well, so did I,'" she said. "Or people will inquire me, 'Aren't you lot worried nearly all that radiation you're getting from your scans?' and I'll remember, 'Are you lot kidding me? You think I've got a choice here?'"
New targeted therapies
Equally new treatments are slowly being approved, MBC patients are starting to accept more than choices, though.
Gralow said the Human Genome Projection has led to a much meliorate understanding of breast cancer with all of its subsets and behavior patterns. Therapies are no longer "one-size-fits-all" but targeted for each cancer subset.
"Nosotros all the same take a long way to go and we are still losing too many women … but there is a lot more than hope for many years of good quality life for a patient diagnosed with a metastatic recurrence now than there was ii decades agone," she said.
One new drug, Perjeta, has shown particular hope when teamed with Herceptin and chemo, bumping survival rates in HER2-positive mets patients by near sixteen months.
"That'southward meaningful," said Gralow. "If you look at the erstwhile textbooks, nosotros used to predict that yous'd alive a twelvemonth or maybe two at most. And if you were HER2 positive, it was much shorter."
Pollastro, who was on Herceptin for vii years, has too benefited from new therapies. In 2004, she participated in a vaccine clinical study run by Fred Hutch'due south Dr. Nora Disis and also received targeted radiation therapy at a cancer handling heart in Rochester, New York. As a outcome, she'south currently NED (no show of disease).
Only she'due south yet cautious about using the word "cured."
"The longer I go, the less worried I go," she said. "Merely I feel like I'm on a merry-become-circular and I go along waiting for it to stop. I've lost a lot of friends and experience bad about that. I have a little survivor'southward guilt. Just It'south like musical chairs. I continue wondering, 'When am I going to miss the chair?' So far, I've been lucky."
Schoger, whose disease has stabilized simply not disappeared entirely, said she, also, feels lucky.
"I feel similar I'm on Easy Street," she said. "I'chiliad not on chemo right now, I'm on endocrine therapy and it's shrinking the cancer and relieving symptoms."
As for the stigma surrounding mets, there are signs that that, too, may be starting to compress, thanks to the work of advocates.
"This is the first year since I tin remember that I've seen media reports that have included women with metastatic disease," said Schoger. "And the MBC Alliance report was very blunt about how the survivorship story has masked the issues of the mets community. If an brotherhood of breast cancer organizations comes out and makes that stiff statement, that's phenomenal progress. That's a corking step forward."
*Editor's annotation: Jody Schoger died of metastatic breast cancer in May 2016. In her own words, she is finally "done with treatment."
Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Eye. She has written extensively about health bug for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A chest cancer survivor, she blogs at doublewhammied.com and tweets @double_whammied. Email her at dmapes@fredhutch.org.
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Source: https://www.fredhutch.org/en/news/center-news/2014/10/stage-4-metastatic-misunderstood-breast-cancer.html
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