Learn how you can stall the development of full-blown Multiple Myeloma with evidence-based nutritional and supplementation therapies.
Click the orange button to the right to learn more.
The article below is an important reminder that MGUS and SMM are not cancer. They are considered to be blood disorders. Yes, MGUS and SMM or pre-myeloma, increase the patient’s risk of a frank myeloma diagnosis but they are not cancer.
I am writing this post because when I read the article linked below in the New York Times, my mind immediately went to the MGUS and SMM Facebook groups filled with posts from patients struggling to understand their diagnostic testing.
To be clear, I fully understand why patients who have been given a diagnosis of pre-myeloma may be concerned. But I think the article below may ease this concern.
Pre-myeloma patients should understand three things-
I am a long-term MM survivor. I have witnessed remarkable improvements in the world of pre-myeloma since my diagnosis of pre-myeloma in 1994.
Email me at David.PeopleBeatingCancer@gmail.com if you have questions about a pre-myeloma diagnosis.
Thank you,
David Emerson
Some oncologists suggest that, for certain early cancers not at risk of spreading, the term “cancer” should be avoided.
A diagnosis is more than words on a page. It’s everything that comes with it: the doctor’s tone of voice, a gentle touch of the hand, the pauses left so the patient can digest the news. All of these details subtly impart how you should think about the label that you’ve just been given.
But one diagnostic word in particular threatens to derail any rational discussion of its meaning: cancer.
“‘Cancer’ is just this panic word,” said Laura Scherer, a social psychologist at the University of Colorado who studies how doctors communicate risk. Patients compare hearing the term to “getting hit by a truck, like they can’t process anything that comes after,” she said.
Kirsten McCaffery, a health researcher and psychologist at the University of Sydney’s School of Public Health, added, “That ‘cancer’ label is kind of an anxiety bomb that goes off for patients.”
That’s why some oncologists argue that, for certain early cancers that aren’t at risk of spreading, the medical profession should do away with the word altogether.
At the heart of the debate is the common breast cancer diagnosis DCIS, or ductal carcinoma in situ. The phrase, which describes cancer cells confined to the lining of the milk ducts, is somewhat of an oxymoron. The National Cancer Institute defines cancer as cells that, if left untreated, will grow uncontrollably and spread to other parts of the body; “in situ,” however, means limited to one place.
The name is “a relic from prior categorization schemes” that essentially means “don’t worry, but worry,” said Dr. Ronald M. Epstein, a professor of medicine at the University of Rochester Medical Center who writes about mindful communication in medicine.
DCIS cells grow, but slowly. For most patients, the cells will never spread beyond their original location or cause problems, and they might even be reabsorbed by the body. For around one in four patients, however, the cells will eventually transform into invasive breast cancer.
The diagnosis therefore challenges the textbook definition of cancer, and it can undermine a clear understanding for the more than 50,000 patients who receive the diagnosis each year.
Calling DCIS “cancer” can signal to patients that they face a medical emergency requiring immediate surgery and, often, radiation. Yet studies suggest that such harsh treatments may be unnecessary and overused. Preliminary results from a trial of nearly 1,000 women with DCIS showed that, two years into the study, patients who were being actively monitored did not experience a higher rate of cancer than patients treated with surgery.
“A lot of these cancers didn’t show up yesterday, so it’s not an emergency,” said Dr. Laura J. Esserman, a surgeon and oncologist at the University of California, San Francisco’s Breast Care Center who diagnoses and treats DCIS. “It’s an emergency only because you know about it.”
To Dr. Esserman, the solution is simple. Call the condition something else: abnormal cells, low-grade lesions, stage 0 cancer, precancer, a risk factor for cancer. Renaming DCIS is an “ethical imperative,” she has argued, to spare patients undue anxiety and to shift the current treatment paradigm from invasive surgery to active monitoring (sometimes with hormone-blocking medications).
This problem goes beyond the breast. A handful of other conditions straddle this in-between space, including early-stage cancers of the lung, thyroid, esophagus, bladder, cervix, prostate and skin. Some, like early-stage prostate cancer, are still called cancer. Others have already had the word excised from their names: Abnormal cervical cells, for example, are now referred to as dysplasia.
In all of these cases, Dr. Esserman said, the word “cancer” does not reflect biological reality. Cancer “is a blight, something that will grow and take over and kill you,” she said. “If the condition is not that, then the name isn’t correct…”
For most of its history, a cancer diagnosis led to stigma and paternalism. When Dr. Markel was growing up, he said, adults spoke in hushed tones about “the C-word.” By 1970, when cancer had become the second-leading cause of death in the United States, it had earned the nickname “the dread disease.”
Before 1977, most doctors wouldn’t even tell patients that they had cancer, for fear that they would give up all hope. “In regard to cancer, the consensus of opinion is that patients be kept in ignorance of the nature and probable outcome of the disease as long as possible,” advised one 1898 article in the New York Medical Journal.
Thanks to a revolution in screening tools and treatments, “cancer” now refers to a wide spectrum of diseases, including conditions that will never spread or cause harm and ones that act more like chronic illnesses than immediate killers.
But the public’s perception hasn’t yet caught up. “The mental model that people have of cancer is that it grows, it spreads and it kills you,” Dr. Scherer said. Hence the argument to lose the name and, with it, the outdated associations of death and doom.
Calling DCIS a “‘risk factor” may better describe the way it increases your risk of developing an invasive cancer, while conveying to patients that they have agency to change their fate. “The challenge with the word ‘cancer’ is it feels like the horse is out of the barn,” said Dr. Arif Kamal, an oncologist and the chief patient officer for the American Cancer Association.
Yet renaming a condition because it sounds scary risks seeming paternalistic, said Dr. Shelley Hwang, a surgical oncologist at Duke University and lead author of the recent DCIS trial. Using a word like “neoplasia,” another term for a tumor, suggests that patients need to be protected from even the idea of cancer. “Like, we’re going to call it this code word for cancer, but the patients won’t be scared because they won’t know what that means,” she said. “It’s a little disingenuous.”
It can also hinder research. As imaging tools emerge that can reveal cancer growing at earlier and earlier stages, doctors have come to believe that most cancers start out as abnormal cells in situ. In that case, removing the word “cancer” from these conditions severs an important link that helps researchers understand the natural history of the disease…
The good news: There is evidence that changing treatment is possible without renaming. More than 60 percent of patients with the lowest-risk form of prostate cancer in the United States opt for a watch-and-wait approach instead of aggressive treatment, which studies show is an “oncologically safe management strategy.” In Sweden, more than 90 percent of patients choose this option.
The bigger question may be not whether to rename or downgrade individual cancers, but how to reframe the larger meaning of the disease and the evolving ways to treat it. And that will require doctors to be thoughtful not just in what they call it, but in how they explain it to individual patients, one at a time.
“At the end of the day, patients aren’t looking for labels. They’re looking for support,” Dr. Kamal said. “They just want to know that they won’t be abandoned or cared for less if they get a label that sounds less ominous.”
MGUS and SMM are not cancer MGUS and SMM are not cancer MGUS and SMM are not cancer MGUS and SMM are not cancer