When is cancer not cancer?

Just how many people are being treated with toxic chemotherapy who have no real need?

In the early 2000s, I attended a mathematical biology conference, during which one paper session was about cancer modeling. This was not my research area, but I was fascinated to learn more, so I attended several presentations. One presenter said something that I will never forget. He said, “We have made basically no progress in our understanding of cancer from 1980 until now.” Leaving aside the potential significance of the year 1980, upon hearing this piece of information, I immediately began to wonder if perhaps we are approaching cancer the entirely wrong way—especially given the over-radiation of women via mammography that has been happening for decades, and the fact that some physicians have expressed that perhaps we are treating abnormalities on mammograms as though they were early stage cancer, and medicating/performing surgery in cases where the woman would never develop breast cancer. There are other types of cancers that have very low to no mortality, such as non-melanoma skin cancers. Thyroid cancer is a question mark, as nearly one third of elderly adults have some form of this affliction, usually referred to as “nodules.” Furthermore, even among cases of genuine thyroid cancer (however that is defined), mortality is extremely low.

So what is cancer, anyway? Do we understand it? Given that, even now, the preferred treatment for cancer at many stages is to cut out body parts, followed by poisoning the patient with chemotherapy until they either recover or die of iatrogenic immune deficiency—there has to be a better way, and perhaps part of that “better way” includes a dramatic revamp of what we consider to be cancer.

Given what I mentioned above, I was intrigued to see the following article from JAMA Online, which I continue to subscribe to because every so often, there are some really interesting articles. Here is what I’d like to briefly discuss today.

Experts Are Debating Whether Some Cancers Shouldn’t Be Called That

Here is how it begins (as always, emphasis mine throughout):

Back in 2012, 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.

I wonder how many of these abnormalities seen via screening and imaging are being treated with toxic chemotherapy? I can think of one example from my own family; an aunt was diagnosed with “stage 0 breast cancer” and was treated with an aggressive course of radiation. Was that even necessary? How will the radiation affect her moving forward? It’s concerning, but I’m encouraged that even the mainstream is beginning to reconsider how we view cancer.

This article is loooong, so I’m going to stick to the most important points.

The meeting participants’ first recommendation was to remove the word cancer from the names of tumors unlikely to become a problem. Instead, the participants urged, the tumors should be classified as indolent lesions of epithelial origin, or IDLEs. Their reasoning? The word cancer generates fear and anxiety, which leads to overtreatment of tumors that are almost never associated with invasion and disease progression.

I’m not sure whether the acronym “IDLE” is likely to gain traction—I feel like they could have come up with something different—but this is a step in the right direction. Here’s an interesting point about prostate cancer:

Two of the most common low-risk tumors bear the same name they’ve long had. Ductal carcinoma in situ (DCIS) is still called carcinoma. Grade group 1 (GG1), also called Gleason 6, prostate cancer is still called cancer, even though the authors of a recent article noted that it “is so highly prevalent it might be considered a normal feature of aging.”

As they say, “Calling indolent tumors cancer can lead to overtreatment.” You think? I spent many years terrified of cancer, only to have the epiphany that it’s not cancer itself that scared me, it’s the treatment; the surgeries and retention in care on chemotherapy until you’re bald and have no immune system left horrify me. (Yes, I am aware that some cancers have been successfully treated in this way, and I mean no malice toward those individuals & am thrilled that their health has been restored, but I also know many people have died from the effects of chemotherapy rather than cancer itself.)

There is some discussion about a particular type of prostate cancer called GG1 prostate cancer, and the fact that, while for most men it isn’t aggressive nor particularly dangerous, there are some cases in which it is deadly. In those cases—which would presumably be identified via imaging—recommendations range from surveillance to active treatment. Here is the summary of their ideas regarding GG1 prostate cancer:

Several months later, some of the same authors published the results of an international survey of approximately 1300 urologists, radiation oncologists, pathologists, and medical oncologists about their perceptions of GG1 prostate cancer. About 4 out of 5 of them said they routinely recommend active surveillance for the disease. About 4 out of 10 felt reclassifying GG1 to a precancerous lesion was a good idea. The remainder were split between disagreement with or uncertainty about the name change.

Moving on to breast cancer, they begin by discussing ductal carcinoma in situ (DCIS), which is the least aggressive form and relatively common. From the article: “DCIS represents about 20% of the 300 000 new US breast cancer diagnoses each year, according to Esserman, who noted that although DCIS is not invasive cancer, it is a risk factor for it.” Furthermore:

Everyone was so worried that if you didn’t operate on these patients, they would get cancer,” explained Duke surgical oncologist Shelley Hwang, MD, MPH. So the conventional management of DCIS has been surgery and radiation followed by endocrine therapy.

Even so, Hwang noted, “I see plenty of patients who’ve already made the decision that they would prefer to do active monitoring.”

[…]

In December, Hwang and her collaborators presented the first results from a multicenter US trial investigating that question. They reported their findings at the San Antonio Breast Cancer Symposium and in JAMA and JAMA Oncology.

Studies have shown that the cause-specific survival rate of patients with DCIS is 97% or 98%, raising the possibility that a similarly high survival rate could be obtained with a less-aggressive approach like active surveillance, noted an accompanying editorial in JAMA.

Hwang, the trial’s principal investigator, and her coauthors enrolled about 1000 women 40 years or older who had been newly diagnosed with hormone receptor–positive grade 1 or grade 2 DCIS without invasive cancer from 2017 to 2023.

The women were randomized to receive either active monitoring—follow-up every 6 months with breast imaging and physical examination—or guideline-concordant care. After 2 years, women who received active monitoring did not have a higher rate of invasive cancer in the same breast than those who got guideline-concordant care.

[…]

For now, the trial at least provides evidence that DCIS is not an emergency. “This is why I think it’s important to call it something else,” said Esserman, who was not involved in Hwang’s trial.

This comports with my intuition, which as we all know is highly scientific. 😇

We continue with a discussion of the final cancer-that-might-not-really-be-cancer, thyroid cancer. I know several people that have had and recovered from thyroid cancer with minimal intervention, but that’s anecdotal. Let’s see what the cancer researchers say. This is a long quote, but all of it really needs to be included.

While the debate over reclassifying DCIS and GG1 prostate cancer as not cancer has bubbled for years, the relabeling of one noninvasive tumor happened relatively quickly.

“This is generally not easy at all,” said Yuri Nikiforov, MD, PhD, a pathology professor and codirector of the Multidisciplinary Thyroid Center at the University of Pittsburgh School of Medicine. “We were kind of lucky.”

Nikiforov was the lead author of a 2016 article in JAMA Oncology that called for reclassifying a thyroid tumor from cancer to not cancer.

“There was a lot of thinking and planning involved to do this, to really be able to reclassify a cancer as noncancer,” he explained. “It’s not enough to bring together experts and say, ‘Okay, these things we should not classify as cancer.’ There has to be data.”

The tumor in question was called encapsulated follicular variant of papillary thyroid carcinoma (EFVPTC). Although evidence was growing that EFVPTC was unlikely to become invasive, it usually was treated the same as conventional thyroid cancer, with a complete thyroidectomy and radioactive iodine to destroy any remaining thyroid tissue. Patients then needed thyroid hormone replacement therapy for the rest of their lives.

One of the last straws for Nikiforov was seeing a 20-year-old patient who’d received the standard thyroid cancer treatment for this indolent tumor. “That’s enough,” he thought. “We are harming patients, but this is a disease that will never harm patients.”

Furthermore, “The international team of authors called for renaming noninvasive EFVPTC as noninvasive follicular thyroid neoplasm with papillary-like nuclear features, or NIFTP.” In 2017, the WHO adopted this nomenclature. (Yes, I know the WHO is wildly problematic.)

To conclude, they discuss the “need for more information.”

Debate aside, a tumor’s name is only the tip of the iceberg.

“I don’t think the name is that important,” acknowledged Hwang, who participated in the 2012 NCI conference about overdiagnosis and overtreatment. “It’s how we react to the diagnosis and how we convey risk to the patients.”

In other words, stop calling low-risk tumors cancer, but make sure patients understand that such lesions are risk factors for cancer and, therefore, require diligent monitoring. Or keep calling the tumors cancer, but make sure patients understand that these lesions are unlikely to cause problems, so active surveillance, not immediate treatment, is appropriate.

There is some discussion of not “scaring patients” by calling low-risk tumors cancer, as well as pointing out that patients are often not getting accurate information about their condition—for example, a man might know his PSA (prostate specific antigen) number, but not the stage of his illness. The article concludes that “As Esserman emphasized, ‘The most important thing for us to do is to educate the public that cancer isn’t one disease.’” Amen to that.

And that is where this discussion ends. Opening up the conversation about whether some cancers are not truly cancer is a great start, but in my opinion we need to go further. Are breast, prostate, and thyroid cancers the only cancers that might have been misclassified? Hopefully, this change in attitude among cancer researchers will open up new pathways to discussion and future research, which, in my opinion, ought to have as its a large part of its focus the avoidance of modern cancer treatments, which might accurately be referred to as barbaric.

Let me know what you think in the comments!