Living with Stage 4: The cancer no one understands
In a culture focused on survivorship, those with metastatic breast cancer who will be in treatment for the rest of their lives can feel isolated and misunderstood
Oct. 24, 2014
By Diane Mapes / Fred Hutch News Service
A no-nonsense Texan of 60 years, Jody Schoger has a very no-nonsense way of educating people about her metastatic breast cancer.
“Someone will say, ‘When are you done with treatment?’ and I’ll tell them, ‘When I’m dead,’” said Schoger, a writer and cancer advocate who lives near Houston. “So many people interpret survivorship as going across the board. That everybody survives cancer now. But everybody does not survive cancer.”
An estimated 155,000 plus women (and men) in the U.S. currently live with “mets,” Stage 4 breast cancer that’s traveled through the bloodstream to create tumors in the liver, lungs, brain, bones and/or other parts of the body. While treatable, metastatic breast cancer (MBC) is incurable. Between 20 and 30 percent of women with early stage breast cancer go on to develop MBC. Median survival is three years; annually, the disease takes 40,000 lives.
As with primary breast cancer, treatment for mets can often be harsh and unforgiving. But dealing with an incurable illness and the side effects of its treatment aren’t the only burden MBC patients have to bear. Many also have to educate 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 beat back their late stage disease.
As one mets patient in this Living Beyond Breast Cancer video put it, “It’s almost like having another job … My wish would be that the larger support circle would just get it more.”
A disease no one ‘gets’
Sadly, people don’t “get” mets. In fact, a recent survey sponsored by Pfizer Oncology shows just how misunderstood it is. Sixty percent of the 2,000 people surveyed knew little to nothing about MBC while 72 percent believed advanced breast cancer was curable as long as it was diagnosed early. Even more disheartening, a full 50 percent thought breast cancer progressed because patients either didn’t take the right treatment or the right preventative measures.
“They’ve built an industry built on four words – early detection equals cure — and that doesn’t even begin to define breast cancer,” said Schoger, who helped found Breast Cancer Social Media, a virtual community for breast cancer survivors, 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 breast cancer (think Avon, Komen, Susan Love, etc.), addressed this lack of understanding and support as well as what many patient advocates term the underfunding of MBC research in a recently published landmark report.
“The dominance of the ‘breast cancer survivor’ identity masks the reality that patients treated for early stage breast cancer can experience metastatic recurrence … [anywhere from] a few months [to] 20 years or more after initial diagnosis,” the report states. “Public messaging about the ‘cure’ and survivorship is so pervasive that people diagnosed at Stage 4 with MBC can be stigmatized by the perception that they’ve failed to take care of themselves or undergo annual screening.”
‘You end up on Mars’
Schoger’s breast cancer — called invasive lobular carcinoma or ILC — came back 15 years after her original diagnosis and treatment.
“You think you’re going to be flying to Chicago and land at O’Hare and you end up on Mars,” she said of her April 2013 mets diagnosis. “It’s not well known that you can have late recurrence. I even had an oncology nurse tell me ‘Oh, you’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 different.
“With primary 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, you use as little as possible to get the biggest effect. You attempt to stabilize the disease.”
For Schoger, that means a daily aromatase inhibitor (AI), which shuts down estrogen production even further to starve her cancer, along with a monthly infusion of Xgeva, a bone strengthening agent designed to combat the bone-zapping side effects of her AI treatment.
Schoger said she will remain on this therapy until it stops working. Then, like most patients with MBC, she’ll move on to something else.
“With metastasis, you’ll have times where you’re responding well and your disease is stable,” she said. “And then there will be a scary time of progression. Then there will be a new treatment, a time of stability again, then – boom – progression. And it’s all sort of going down each time that happens.
“None of us knows which way our disease is going to go,” said Schoger, who has lost many friends to MBC. “Everybody hopes for the longest possible time for the first therapy you’re given. But some women have aggressive disease and just blow through their therapies.”
From ‘cured’ to Stage 4
Others, like Teri Pollastro, a 54-year-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 time 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 Research Center. 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 4.”
Pollastro went on Herceptin, a type of immunotherapy for women with HER2 positive metastatic breast cancer, and did six months of chemotherapy.
“I felt better right away with the treatment,” she said. “But the problem is, it stopped [working]. That’s what you can expect with mets. And there’s always some residual cancer. And that starts percolating.”
And along with mets, she also had to deal with many misconceptions regarding her disease.
“People don’t understand the word metastatic to begin with,” she said. “They’d say, ‘Oh now you have liver cancer? How could that happen? Doesn’t it go to the other breast first? And when I’d tell them I was Stage 4, they’d give me pity or stay away or see me a year later and think I was a ghost. They couldn’t believe I was alive.”
The Mercer Island, Wash., mother of two, who often counsels newly diagnosed patients, sometimes even found it difficult 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 be fine and I think, ‘Well, so did I,’” she said. “Or people will ask me, ‘Aren’t you worried about all that radiation you’re getting from your scans?’ and I’ll think, ‘Are you kidding me? You think I’ve got a choice here?’”
New targeted therapies
As new treatments are slowly being approved, MBC patients are starting to have more choices, though.
Gralow said the human genome project has led to a much better 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.
“We still have a long way to go and we are still losing too many women … but there is a lot more hope for many years of good quality life for a patient diagnosed with a metastatic recurrence now than there was two decades ago,” she said.
One new drug, Perjeta, has shown particular promise when teamed with Herceptin and chemo, bumping survival rates in HER2 positive mets patients by nearly 16 months.
“That’s meaningful,” said Gralow. “If you look at the old textbooks, we used to predict that you’d live a year or maybe two at most. And if you were HER2 positive, it was much shorter.”
Pollastro, who was on Herceptin for seven years, has also benefited from new therapies. In 2004, she participated in a vaccine clinical study run by Fred Hutch’s Dr. Nora Disis and also received targeted radiation therapy at a cancer treatment center in Rochester, New York. As a result, she’s currently NED (no evidence of disease).
But she’s still cautious about using the word “cured”.
“The longer I go, the less worried I get,” she said. “But I feel like I’m on a merry-go-round and I keep waiting for it to stop. I’ve lost a lot of friends and feel bad about that. I have a little survivor’s guilt. But It’s like musical chairs. I keep wondering, ‘When am I going to miss the chair?’ So far, I’ve been lucky.”
Schoger whose disease has stabilized but not disappeared entirely, said she too feels lucky.
“I feel like I’m on Easy Street,” she said. “I’m 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 shrink, thanks to the work of advocates.
“This is the first year since I can 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 alliance of breast cancer organizations comes out and makes that strong statement, that’s phenomenal progress. That’s a great step forward.”
Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has also written extensively about health issues for nbcnews.com, TODAY.com, CNN.com, MSN.com, Columns and several other publications. She also writes the breast cancer blog, doublewhammied.com.Reach her at email@example.com.
Solid tumors, such as those of the breast, are the focus of Solid Tumor Translational Research, a network comprised of Fred Hutchinson Cancer Research Center, UW Medicine and Seattle Cancer Care Alliance. STTR is bridging laboratory sciences and patient care to provide the most precise treatment options for patients with solid tumor cancers.
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