Why the Women Most Likely to Die of Breast Cancer Have Gotten the Least Attention

[question everything]

This is from TIME magazine from last October. Just now got to read it.

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(snip)

Despite the billions of dollars collected and spent on breast-cancer research over the past half-century, relatively little has been devoted to studying metastatic-breast-cancer patients or their particular forms of the disease. Doctors do not know why some breast cancers eventually form deadly metastases or how to quash the disease once it has spread. Patients with metastatic disease are typically treated with one drug after another, their doctors switching the medications whenever the disease stops responding to treatment. Eventually, nearly all patients with breast-cancer metastases run out of options and die, although in recent years, many have been living longer. Of the four metastatic-breast-cancer patients who founded METAvivor in 2009, three have died, but one is still alive, 13 years after discovering that her disease had spread.

Diagnosed with estrogen-receptor-positive breast cancer in January 2014 at the age of 37, Lianne Kraemer had a double mastectomy, chemotherapy, lymph-node removal, radiation and hormone treatment. She emerged from the yearlong ordeal relieved she had acted quickly—she’d felt a lump in her breast and was diagnosed the next month. Then, in June 2016, Kraemer was doing laundry when she felt a tingling in the right side of her lips. The next day, the right side of her gums and tongue started to feel weird too. “During that day, the crease on my right index finger felt like someone had put a slight rubber band around it,” Kraemer told me. Kraemer emailed her oncologist, who recommended she get a brain MRI, and she asked her uncle, a neurologist, to review the scan. When he broke the news that it looked as if her breast cancer had spread and formed about a dozen small tumors inside her brain, she was stunned.

Three-quarters of women with metastatic breast cancer were originally diagnosed with early-stage disease. The idea that the breast cancer “came back” after initial treatment is a bit misleading. Women who undergo traditional chemotherapy shortly after an early-stage diagnosis, as I did, do so because their doctors believe they may have micrometastases—cancer growths outside the breast that are too small to appear on scans. Breast cancer that is treated and later metastasizes into larger tumors around the body somehow managed to survive the initial treatment. Women who declare themselves cancer-free have no way of knowing if they really are. Sometimes breast cancer continues to grow during treatment. Other times, breast-cancer cells remain alive and go dormant but then begin multiplying years or even decades later.

(snip)

Pharmaceutical companies and researchers often test new drugs on metastatic patients before anyone else. These are women who are dying anyway, and they are the ones most willing to be part of experiments. But the goal for most drug development is to treat early-stage patients successfully and eradicate breast cancer before it spreads.

According to Cyrus Ghajar, a cancer biologist at the Fred Hutchinson Cancer Research Center in Seattle, 25% to 40% of early-stage breast-cancer patients already have cancer cells in their bone marrow, and these patients are, on average, three times more likely than those who don’t to develop other metastases later. It’s impossible to know if a patient has cancer cells in her bone marrow without driving a long needle into a large bone and aspirating marrow from inside. Ghajar, one of a relatively small number of scientists studying metastatic breast cancer full time, said that, in theory, patients could give consent to have their marrow drawn when they are placed under general anesthesia for lumpectomies or mastectomies. The results could tell doctors which women were more likely to face a recurrence of their breast cancer and therefore might need more treatment up front. “We don’t have a way to further stratify people, because we haven’t studied it enough,” Ghajar told me. “We don’t have enough samples.” Ghajar pointed out that the Cancer Moonshot, a National Cancer Institute initiative launched by President Barack Obama and Vice President Joe Biden, does not explicitly provide funding to address the challenges of metastatic cancer. “How can you have a moonshot trying to cure cancer and not mention people dying of cancer?” he said.

(snip)

But imaging has gotten much better since the 1990s, with MRI, positron–emission tomography (PET) and CT scans able to detect tumors as small as a few millimeters. A 2017 study by researchers at the National Cancer Institute found that some 11% of women under 65 diagnosed with metastatic breast cancer live for 10 years or more. The year prior, George Sledge, chief of oncology at Stanford, had published a paper in the Journal of Oncology Practice called “Curing Metastatic Breast Cancer.” In it, he suggested that the existing paradigm around metastatic breast cancer—that it is incurable and not worth looking for—should be updated in the face of new science. “If some patients are cured,” he wrote, “might not we cure more?”

(snip)

“All things considered, I’m really lucky,” Kraemer, now 43, told me recently. It has been more than three years since she was diagnosed with metastatic breast cancer in her brain. She has survived longer than most women like her, thanks to new drugs, clinical trials and creative thinking by her doctors. Kraemer is proof that research and science can change the fates of metastatic-breast-cancer patients. We just need more of it.

https://time.com/5689570/metastatic-breast-cancer-research-treatment/

Excerpted with permission from Radical: The Science, Culture, and History of Breast Cancer in America, by Kate Pickert.

[CaliforniaPeggy]

1. This is important stuff. I thank you for having posted it! n/t

[nocoincidences]

2. I lost the love of my life to

metastatic breast cancer in 2004.

Her cancer was already in her lymph nodes at the time of her initial diagnosis. It was an extremely aggressive cancer, and eventually, two and a half years from diagnosis, went into her cerebrospinal fluid. Her cranial nerves were affected, despite the use of direct infusion of chemo into her brain.

She was asymptomatic in April, began to lose her leg strength suddenly in May, that worsened over the next few months, they did the Ommaya port into her brain in August, and it went straight downhill into hospice for 10 days and death on Oct. 3.

Metastatic breast cancer to the CSF is unsurvivable at this point in medical treatment.

I see lots of breast cancer drugs being touted that might have been helpful for her, but I don't think the stats have changed much for metastatic breast cancer since she died in 2004.

That is a travesty. Women deserve better medical treatment for this deadly disease.

Every woman knows at least one other woman who has/has had breast cancer. It hangs over all our heads.

The incentive is there to create the drug or the treatment that fixes this, so why isn't it happening? Is it too lucrative to treat instead of cure?

My paranoia is seriously snagged by this unsolved problem.

I don't get it.

[question everything]

3. I am so sorry for your loss

How heart breaking it must have been to live through such agonizing time.

Yes, even since 2004 new treatments have been added.

One problem is that we, humans are distinct individuals and there is never one treatments that fit all. There are many genetic variations that can affect the path of the disease and the effectiveness of the treatments.

I hope that by now memories of happier time sustain you.