Sometimes, when it comes to science, it seems like we can’t make up our minds—which is true. This is because of how science works: We make observations and, on the basis of what we see, come up with an hypothesis. We move forward with that hypothesis until more observations or new information makes it clear we need to question our current hypothesis. That leads to the next hypothesis, and so on.

In a viewpoint published online yesterday in the Journal of the American Medical Association three cancer experts, who led a National Cancer Institute working group, recommended changing the definition of cancer and giving new names to categories like ductal carcinoma in situ (DCIS), which include the word “cancer” but are actually precancers.

Their recommendations stem from a shift in our understanding of the biology of the disease. We used to think that all cancers were the same and that they started in a bad cell and then grew until they got out of the organ where they started and spread to other parts of the body, resulting in death. What we now know is that there are many different kinds of cancers and that there can be a variety of cancer cells that make up the tumor that can be categorized according to the types of mutations in their genes. Even in a particular organ there may be several different kinds of cancers that grow at different rates. Some of these cancers may remain precancers throughout a person’s lifetime. Others may grow so rapidly that they have already spread to other parts of the body before they are found. The problem is that we currently treat all cancers the same. This leads to overtreatment of some and undertreatment of others.

The cancer experts are proposing that we take a more nuanced view of the disease, acknowledging that it is more complicated than the campaigns that promote early cancer detection suggest. As they say in their piece, “The ideal screening intervention focuses on detection of disease that will ultimately cause harm, that is more likely to be cured if detected early and for which curative treatments are more effective in early-stage disease.” They also note that, “physicians, patients, and the general public must recognize that overdiagnosis is common and occurs more frequently with cancer screening.” As a result, they are recommending that, “the term cancer should be reserved for describing lesions with a reasonable likelihood of lethal progression if left untreated.”

They are proposing that precancers be called IDLE (indolent lesions of epithelial origin). It’s not yet clear if this specific term will catch on, but I hope the larger idea of giving precancers a new name does. Once we have given new names to these lesions, which in the breast include DCIS and LCIS, we could go on to address their second proposal: Creating observational registries that would follow women with DCIS and LCIS over time so that we could determine which precancers do progress and, if so, over what time frame. We could also identify the local environments that egg  precancers on to become a cancer that could result in death and that which will not–which would keep many women from worrying and being overtreated. Or, even better, we could figure out what causes precancerous and cancerous to arise in the first place so we can prevent them all together!

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8 Responses to What’s In a Name?

  1. I’ve been watching all the emerging research on cancer like a person might watch a thriller movie on the edge of their seat. Every time a new study is released, I wonder, “What will happen next?!” Kinda hoping by the end of the ‘movie’ everything will be resolved.

    In any case, it’s so good they are starting to differentiate between cancers, etc. One size doesn’t come close to fitting all. ~Catherine

  2. Josie says:

    My question about this recent research is what to do if one receives a diagnosis of DCIS. When asking the oncologist I see, and now the oncologist my sister saw today (she was just diagnosed), we hear the same – DCIS must come out, be treated with radiation, and the hormone drugs (for estrogen receptor positive DCIS). The article/research seems to indicate that this is not true yet both medical teams insist the opposite. Is there any clarity?

  3. Stephanie says:

    I understand the argument, but find the issue of DCIS confusing. I was diagnosed with early DCIS, had surgery, and then underwent 35 radiation treatments. Had Tamoxifen been the standard of care at the time, I would have been treated with that. But that’s not cancer? If it is treated like cancer, I think it is cancer. I was told it was not a real cancer, until I developed invasive breast cancer at the same exact site. 15 years later. Coincidence? I don’t know. I do know I now have mets and it all started with something we aren’t supposed to call cancer.

  4. Dr Susan Love says:

    Josie and Stephanie your comments are a reflection of the current approach to DCIS. What the piece in JAMA was suggesting was that we don’t really understand these lesions. Some of them may actually be malignant as in Stephanie’s case while others (80%) may be fine if left alone. Since we can’t tell which is which we tend to over treat everyone. The goal of the name change is open up the possibility to do research to better understand the differences so that we can tailor the treatment to the situation. It is interesting that LCIS or lobular carcinoma in situ is not treated as cancer but rather as a high risk lesion and treated with tamoxifen only while DCIS or ductal carcinoma in situ is treated as cancer. Obviously this is an area that needs more research for all of us to understand what is best.

  5. Sandra says:

    I share the confusion about DCIS. When I was diagnosed in December 2010, I had heard of the ‘wait and observe’ idea. I considered it but decided to go with the recommended treatment of lumpectomy (BCS). I am glad I did because the biopsy after surgery revealed a 3mm invasive lump outside of the duct. I hate to think what might have happened if I had waited.

  6. Pauline says:

    I was diagnosed with Grade 1, Stage 1, nearly 2cm cancer which turned out to be Tubular with a bit of cribriform, two of the least aggressive cancers. I found this out on my own, although I was aware they were low grade. I had needed more time for my lymph node surgery to heal. If that hadn’t played up on me I would have blindly gone into having a lot of radiotherapy, much of it unnecessary and wrongly prescribed. I turned down radiotherapy and tamoxifen and I am happy with my decision.

    After doing three weeks solid research I found approximate figures for my recurrence rate and it seems when the negative effects of radiotherapy were added to the benefit of it, there were only a couple of points left, so I said no.

    I got a hard time from the radio oncologist and also the nurse, yet they were supposed to support me in whatever decision I made. Neither of them were interested in giving me the particulars of my kind of cancer either, so I did my own research, reached my own conclusions.

    The biggest thing I would like to say though is WHY the alcohol connection is not more publicized. I have given it up completely and have a new live style instead of radiotherapy. Just taking my chances here.

    Some of my family didn’t understand so I wrote a blog explaining it all: http://nzmermaid.blogspot.co.nz

  7. Jennifer says:

    Passing this on with some information…
    There are a few in the cancer community that are pushing for contained cancer to be monitored and not treated and no longer classified as cancer. I have followed some of the debate. But from personal experience, I am thankful that my doctor at UC, Barret Cancer Center, the doctor in debate from Sloan-Kettering who recently debated on PBS News Hour as well as other medical professionals that know that cancer is cancer is cancer.

    Waiting for cancer in infiltrate/invade was not a risk that needed to be “monitored” and that was a decision made with my treatment team and family. My cancer was contained, all 18.2 x 5.4 x 3.6 cm and my path. report revealed significant changes in thee other breast. Changes related to lobular cancer, not the DCIS of the left breast.

    Never gone “public” but it is time in support of treatment, acknowledgement of large institutions that know that cancer contained is not yet an area to play “lab rat” with patients, and to debunk the myths and “gossip” that exist.

    Support research, local organizations, and people on this journey whether it’s someone that opts for preventative measures following genetic testing, removal of contained cancers, treatments that may be different than the norm, and/or a person’s right to alternative measures, or to stop treatment.

    It’s sad to think of anyone in the cancer community that is not supportive; let’s respect individuals, medical professionals, and decisions made between patients and their care communities.

  8. Donna Pinto says:

    DCIS is NOT cancer and should NOT be treated as if it is. The current “standard of care” is often extreme overtreatment. Most women are scared and rushed into aggressive, deforming, toxic, harmful treatments. We need to encourage women to make more informed decisions and to pursue expert 2nd pathological opinions. We also need more individualized care based on each woman’s unique situation as well as better, safer and more integrative management strategies. I am grateful to Dr. Laura Esserman and other breast cancer experts who are working to take the anxiety-producing word “carcinoma” out of DCIS. For anyone newly diagnosed, please see my story and resources at my blog: http://dcis411.com/

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