Is the word “cancer” out of date? What’s in a name?

An article in today’s New York Times (“‘Cancer’ or ‘weird cells’: which sounds deadlier?“) focuses on the question of whether many conditions currently referred to as “cancer” really are … and whether by calling them “cancer” we prejudice doctors and patients into taking overly aggressive action.

In the case of prostate cancer, identifiable forms of pathology that used to be classified as Gleason 1 + 1 = 2 through 3 + 2 = 5 until 2002 are now referred to as being Gleason 6 cancers. In other words, all pathologically identifiable forms of tissue found on a needle biopsy are now given a Gleason score of at least 3 + 3 = 6. It is the lowest assignable Gleason score for any form of “cancer” diagnosed by prostate biopsy. But are all these forms of prostate pathology really clinically significant prostate cancer? Maybe we really should be calling them something else.

In the case of breast cancer, some 20 percent of all diagnoses are now AJCC stage 0 disease (also known as “ductal carcinoma in situ” or DCIS). Is this really clinically significant breast cancer for most of the women so diagnosed?

Of course there is really no easy answer to either of these questions. At least some very early stage and apparently low risk  forms of “cancer” may turn out to be aggressive. Similarly, some seemingly significant and palpable tumors may prove to be almost completely indolent.

The real problem is the same old problem … We simply can’t tell, at the time when we can now identify “weird cells,” whether those weird cells really are clinically significant or not. All that we do know is that we are certainly aggressively treating more men for prostate “cancer” and more women for breast “cancer” than really need such aggressive treatment. Why? Because the word “cancer” comes with sociocultural implications going back to a time in the late 19th and early 20th Centuries when, by the time these conditions were diagnosed and given the name “cancer,” everyone “knew” that the very diagnosis was a death sentence. Most of us still live with that perspective, despite the fact that it is demonstrably untrue.

The failure to discriminate between clinically significant and clinically insignificant forms of “cancer” also has had a secondary implication. Those men and women unlucky enough to have aggressive, clinically significant forms of prostate and breast cancers have become “marginalized.” They are no longer the only “survivors.” They have become part of a vast community of people who self-identify as “cancer survivors.” What is sad about this is that it is the people with the aggressive, clinically significant forms of progressive disease who are still most likely to die from their cancer, and who therefore are at greatest need for better treatments and greater help.

Even among the so-called “deadly” cancers — the ones like lung cancer and pancreatic cancer with 5-year survival rates of < 50 percent — we are now able to identify some “weird cells” so early that some patients ave pathologic findings that are given a different name. In the case of multiple myeloma, for example, there is a vast pool of people who are defined as having “monoclonal gammopathy of undetermined significance” (MGUS). A very small percentage of these (about 1 percent a year) do go on to have full-blown myeloma … but the vast majority don’t. They are monitored, and they are treated immediately if their condition progresses. However, these patients don’t have to live with the idea that they have a “cancer;” they aren’t clamoring to be treated; and their doctors aren’t clamoring to treat them.

Maybe there is “something” in a name?

9 Responses

  1. The question implied in the article is whether renaming these lower grade cancers would reduce the over-treatment of tumors that is now happening, especially for prostate cancer. The way to reduce over-treatment is to be truly patient centric.

    The two major principles of patient-centric care that are in play here are: (1) information/patient education and (2) shared decision-making. Give the patients the facts and then work with them to make the right decison as it relates to their situation. Unfortuately the system does not work that way now in all cases. The information given to a patient is many times biased, and decision-making is not truly shared

  2. Dear James:

    While your theory is good, reality is more challenging. As an example, I learned the other day something that had never occurred to me … that a lot of men choosing to have radiation therapy as opposed to surgery do so because they actually believe that radiation therapy leaves non-cancerous areas of their prostate intact and undamaged. There is no way that any radiation oncologist (let alone any surgeon) ever told these men anything that inaccurate. One believes something like that because one has the delusional idea that radiation only affects cancer cells.

    Sometimes what patients are told is not what patients “hear.” When you tell people they have “cancer,” many of them stop hearing anything for a period of time. This is a sociocultural problem that goes way beyond the information and education offered to patients at the time of diagnosis.

  3. Semantic changes like that could have the benefit of making active surveillance more psychologically tolerable.

  4. Mike:

    Referring to your comment about Gleason scores below 3 + 3 are all identified as Gleason 6 now, are you referring to biopsy, in addition to surgical pathology? I was under the impression that pathologists observing biopsy specimens disregarded Gleason pattern 1 and Gleason pattern 2 in their report (Epstein JI, et al. The 2005 International Society of Urological Pathology (ISUP) Consensus Conference on Gleason Grading of Prostatic Carcinoma. Am Surg Pathol. 2005;29:1228–42).

  5. John:

    Most commentary on the recommendations of the consensus conference are clear that the ISUP 2005 recommendations “follow a trend towards the use of higher grades than before.”

    Let’s be clear. I have no problem with the idea that tissues found on biopsy that used to be classified as Gleason pattern 1 and Gleason pattern 2 should no longer be classified as cancer … but pathologists are humans too … What do you think a good pathologist is going to do today when faced with a biopsy specimen that clearly looks cancerous but which (s)he might previously have classified as Gleason pattern 2? (S)he is going to classify it as Gleason pattern 3! Why? Because it looks cancerous, and the differences between Gleason pattern 2 and Gleason pattern 3 are marginal. (S)he has little other option. (S)he can’t classify it as non-cancerous, because (s)he thinks it is. (S)he can’t classify it as ASAP or HG-PIN, because it isn’t. QED.

    And then there is the other factor that relates to the post-surgical pathology. You can’t downgrade a biopsy-based Gleason 3 + 3 = 6 that was based on two (or more) positive cores any more. Even if the post-surgical pathology shows a single focus of Gleason pattern 3 and “no apparent cancer” (i.e., Gleason pattern 1 or 2) where the biopsy had suggested that there was a second focus of Gleason pattern 3, you now have to classify the cancer as pathologic Gleason 3 + 3 = 6.

  6. I would like to know the reference for Dr. Brawley’s quote (see below). It makes little sense that the developer of a system to grade prostate cancer would call the most typical grading (3 + 3) “adenosis” when by Dr. Brawley’s own admission Dr. Gleason’s intention to call it “cancer” was for “men and their doctors would feel they had to get rid of it right away”.

    “The pathologist Donald Gleason, who invented Gleason scoring for prostate tumors, wanted to rename a very common tumor — the so-called Gleason 3 + 3 — “adenosis” instead of cancer, Dr. Brawley said. His idea was that by calling a 3 + 3 ‘cancer,’ men and their doctors would feel they had to get rid of it right away.

    “Despite Dr. Gleason’s wishes, 3 + 3 cells are still called cancer. And despite the panel’s advice about D.C.I.S., that name has not changed either.”

    Calling cancer by any other name to avoid over treatment is over the top, naive and can be misleading because of the present diagnosis uncertainty. What else will he come up with to fit his purpose?

  7. It’s still cancer — uncontrolled cell growth. It’s just a matter of how fast it grows. To change the name or, worse yet, avoid detecting it (PSA test) is stupid. I’m in the 15% with agressive prostate cancer (doubling time of 3 months). We need to have a better way of measuring and communicating this factor of growth. Few doctors ever mention doubling time or velocity. We could emulate diabetes categories, Type I and Type II to indicate the overall severity.

  8. I want to comment on something Ralph said:

    “Calling cancer by any other name to avoid over-treatment is over the top, naive and can be misleading because of the present diagnosis uncertainty.”

    There are many prominent urologists, strongly in favor of active surveillance and much opposed to Brawley’s positions on testing, who favor renaming insignificant findings to something other than cancer. I would define insignificant findings as as a Gleason score of 3 + 3 in tumors of less than 2 mm in no more than a couple of cores.

    There are many men, who, on hearing the “C” word, will only contemplate immediate intervention despite being excellent candidates for active surveillance. If minor incidence of “weird cells” that might always remain indolent was called by a name other than cancer, the uneducated man might still consider actively watching those cells for signs they are becoming more aggressive.

    Practically, this may sound naive, but it does work and may avoid some degree of over-treatment.

    On this topic, there is a major conference coming up in Bethesda, MD from 12/5 to 12/7 titled “The Role of Active Surveillance in the Management of Men with Localized Prostate Cancer;” it is also accessible via a webcast (perhaps the Sitemaster can post information). The purpose of the conference is for the NIH to come up with a new statement on AS. Amongst others, Peter Carroll will be debating Otis Brawley — that should be worth the price of entry, which is free!!!


  9. For access to full information about the NIH conference (including the webcast), please click here. The sitemaster will be attending in person! For access to info about the webcast itself, please click here.

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