The 'anxiety bomb'--CANCER!-- and how some doctors are trying to remove the 'C word' from GG1 & Ductal carcinoma in situ

Also, don't miss the ASPI February session on Gleason 3+4=7.

By Howard Wolinsky

The idea of not calling certain cancers '“cancer”—such as low-risk prostate cancer—is spreading—like … well, metastatic cancer.

New York Times reporter Rachel E. Gross tells the tale—well-known in this newsletter—of how the label is misplaced with certain cancers.

She noted; “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.

Her sources said patients comparing getting diagnosed with the Big C—or little C in cases those of us with lower-risk PCa—to “getting hit by a truck, like they can’t process anything that comes after. Another source told her the “‘cancer’ label is kind of “an anxiety bomb that goes off for patients.”

Gross said several conditions straddle an “in-between space,” including early-stage cancers of the breast, 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,” she said.

I have been involved with a group of prostate experts in a campaign to try to rename low-risk “prostate cancer” as a non-cancer. Why? The label causes anxiety and other emotional distress and also can cause “financial toxicity,” such as insurance and job discrimination. We laid out our case in the Journal of Clinical Oncology and other publications, including The Active Surveillor.

In MedPageToday in January 2021, I unofficially kicked off what has become an intense debate about the proposal to persuade doctors to reclassify Gleason 6 as a noncancer. Our leader, Dr. Scott Eggener, a urologic oncologist at the University of Chicago and my former doctor, argued that Gleason 6 (AKA Gleason Grade Group 1) “cancer” look like cancer but don’t act like cancer. He said “pure” Gleason 6 lesions pose no medical threat to patients, but they do pose risks for psychological and economic harms.

I can assure you that renaming a cancer as a noncancer is not easy. There are special interests, such as pathologists, who placed a stake in the ground. Our research has shown that about 90% of pathologists oppose the change.

Urologists are mixed 50-50 on the question. Some urologists worry that if patients were told they didn’t have cancer that they’d give up Active Surveillance.

Research I led showed that only 5% of these men thought they’d ditch AS. 82% said they’d stick with the AS program. The rest were undecided.

Gross noted: “{C]ancer has never been just about biology. The word comes weighted with centuries of baggage from a time when its utterance spelled certain death.” “By the time it was diagnosed, you were gone,” said Dr. Howard Markel, a medical historian and professor emeritus at the University of Michigan (Go, Blue!).

Gross noted: “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 2898 article in the New York Medical Journal.

Check out the NYT article to learn more.

Is favorable intermediate-risk PCa the future for Active Surveillnce?

Kevin Ginsburg, MD, urologic oncologist at the Karmanos Cancer Institute/Wayne State University in Detroit, will be presenting a webinar for Active Surveillance Patients International (ASPI) entitled “Is favorable intermediate-risk PCa the future of AS?"

The program will be held from —12-1:30 pm Eastern, Saturday, Feb. 22. Celebrate President George Washington’s birthday with ASPI.

To register, go to: https://aspatients.org/event/is-favorable-intermediate-risk-pca-the-future-of-as/

Ginsburg is J. Edson Pontes, M.D., Distinguished Endowed Chair in Men's Health at Wayne State and co-director of the MUSIC prostate program.

(Dr. Kevin Ginsburg, co-director of the very successful MUSIC program in Michigan.)

MUSIC (Michigan Urological Surgery Improvement Collaborative) has been one of the most successful U.S. programs for Active Surveillance. Over 90% of patients with low-risk prostate cancer in its program go on AS vs. 60% nationally. Likewise, MUSIC has been successful in offering AS to patients with favorable intermediate-risk prostate cancer at a rate of about 45% compared with 20% nationally.

In 2023, ASPI presented MUSIC with its first ASPI AS ADVOCACY AWARD for its advances in researching and promoting Active Surveillance for lower-risk patients in place of aggressive treatments.

JAMA reports on the cancer name change, too

By Howard Wolinsky

In an article entitled, “Experts Are Debating Whether Some Cancers Shouldn’t Be Called That” in the Jan. 17 issue, of JAMA Network, star medical reporter Rita Rubin tells th story of whether low-risk prostate cancer should be renamed noncancer.

It started back in 2012 when the National Cancer Institute (NCI) convened a conference to discuss the overdiagnosis and overtreatment of indolent tumors—asymptomatic lesions unlikely to progress for years—that are detected by mammography, prostate-specific antigen (PSA) testing, and other screening tools.

Rubin notes there has not been much movement since 2012. But aroound 2021, my former urologist, Scott Eggener, MD, of UChicago, mounted a campaign to reclassify Gleason 6/Grade Group 1 as a noncancer.

Rubin said of GG1: “Although GG1 prostate cancer is still classified as cancer, most patients with that diagnosis don’t jump into treatment, a decision supported by guidelines.

“GG1 prostate cancer is the least aggressive form of the disease. Pure GG1 prostate cancer—prostate tumors can be a mix of different grades—can’t metastasize, but it is a marker for coexisting or future higher-grade cancer.

“For patients with low-risk prostate cancer, clinicians should recommend active surveillance as the preferred management option,” according to the joint guideline from the American Urological Association (AUA) and American Society for Radiation Oncology (ASTRO).”

Back when I was diagnosed in 2010, 90-94% of men with Gleaso n got aggressive treatment, radical surgery or radiation, with risk for ED and incontinence.

Rubin added: “Even so, as of 2021, about 40% of US patients with prostate cancer who were candidates for active surveillance were still treated, although the rates varied widely among practices and practitioners, according to a 2023 article in JAMA Network Open. As the AUA and ASTRO guideline points out, all prostate cancer treatments carry risks, particularly related to urinary, sexual, and bowel function.

However, of those patients who aren’t treated, many don’t undergo active surveillance either, suggested a 2016 study. Using the linked Surveillance, Epidemiology, and End Results–Medicare dataset, the researchers identified more than 13 000 men with low-risk prostate cancer, nearly 3000 of whom didn’t receive any treatment in the first year after their diagnosis.

Rubin said: “Of the untreated men, 39% didn’t undergo any of 3 surveillance strategies—at least 1 prostate biopsy, 4 or more PSA tests, or 4 or more visits to a physician with prostate cancer listed as the diagnosis—in that first year. And untreated Black men were more likely not to undergo surveillance than untreated White men.

“The question is whether relabeling GG1 prostate cancer as not cancer would encourage more patients to forego unnecessary treatment—one argument for renaming it—but also dissuade some from taking the need for active surveillance seriously.”

Laura Esserman, MD, MBA, director of the University of California, San Francisco, Breast Care Center, who served on the GG1 working group that produced the recent article about whether the low-grade tumor is really cancer, the answer is clear.

“You don’t have to scare people to do surveillance,” she said. “You don’t have to have people get treatment they don’t need because they’re afraid of the name.”

Still, Esserman, one of the most outspoken advocates of changing the nomenclature, remains optimistic about the chances of that happening. told She old JAMA: “I think we will see a change,” said Esserman, who in 2023 coauthored a New York Times opinion piece on the topic. “I don’t know when it will be. Old theories often die when the people who espouse them do.”

Ruth Etzioni, PhD, a biostatistician at the Fred Hutchinson Cancer Center’s Public Health Sciences Division made an excellent point on the issue of redefining a medical condition: “We haven’t succeeded in putting ‘cancer’ and ‘doesn’t need to be treated’ in the same sentence.”

Shwe added: “The answer is to better help patients understand what cancer is—that cancer is not as scary as it used to be, that there are different types of cancer—to really make sure patients understand what they have,” Etzioni said.

[Disclosure: I was 19-year-old Rita Rubin’s mentor at Florida TODAY 49 years ago when she was an intern from Northwestern University’s Medill Scjool of Journalism at Florida Today. I trained her, and she followed me down the path of medical journalism and has excelled. As mentor—not a tormentor—I couldn’t be more proud. Way to go, Rita.

[I was co-author of a recent. paper mentioned in the JAMA article. Also, Dr. Esserman recruited me as an advisor on research her group was doing on a type of AS for women with ductal carcinoma in situ (DCIS). Men, for once, have succeeded at something health-related: AS. But AS is a hard-sell for women. Why do you think that is? Another odd coincidence: Dr. Esserman grew up one block away from where I live now ouside Chicago.]

MRI-invisible lesions and low-risk prostate cancer

Don’t miss this Jan. 25 webinar from Active Surveillance Patients on MRI-invisible lesions featuring pioneering researcher Dr. Mark Emberton, Professor of Interventional oncology at University College London and Dean of its Faculty of Medical Sciences.

Catch the video here: https://aspatients.org/meeting/mri-invisible-lesions-and-low-risk-prostate-cancer/

Emberton is a pioneer in the use of MRIs in diagnosing, classifying and monitoring prostate cancer.

More coming soon. Emberton will be returning for a webinar at ASPI in the fall.

Tick-tock. Join the Promise DNA study

If you have been diagnosed with prostate cancer and you want to spit for science and get a free germline test, you’d better hurry.
Christina Tran, MPH senior project manager for Promise, told The Active Surveillor the study has about filled its quota. She said Promise has tested 4,377 men with prostate cancer across the U.S. “We are aiming to test 5,000 to identify 500 men with prostate cancer and germline mutations of interest.”

So sign up soon: prostatecancerpromise.org

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