News: DCIS shouldn't be called cancer?

Yep! That's a milestone that has been in the making for a few years. Researchers and clinicians are moving away from concrete labeling of illnesses. Forward thinkers are describing many illnesses on a spectrum. Naysayers will say this is a plan to save money. Others will rally that with today's technology no one knows with certainty which indolent cells might one day become aggressive so we must treat all tumors when found. But the simple fact is new technology has created this quagmire. We now can find disease early and often and no two tumor cells are alike. So it's time to embrace the idea that the word "cancer" may now have new meanings and we must accept new definitions when describing cancer.

Lane...less than a decade ago the standard of care for most women with ER+ invasive tumors was to receive chemo. With the advent of the new genetic testing, today many women are spared chemo. Physicians are moving closer each year to less and less over treatment. Hopefully soon, patients diagnosed with DCIS will be offered more choices that will involve less treatment. But before we get there, patients and their physicians need to work together in understanding that for most of us breast cancer is a host of diseases, some more dangerous than others.

I hope that they will begin to make some progress in determining which forms of DCIS need to be treated more aggressively and which can be treated less aggressively. They really aren't there yet. Beesie posted (on another thread today), that variables such as grade, focality and extent of the pathological lesion(s) may distinguish between low and high risk DCIS as actually being different disease processes entirely, allowing some individuals to possibly forego some of the more aggressive treatment.  At this point, some individuals with very small foci of low grade DCIS have opted to avoid radiation, with the blessing or direction of their treatment team.  The standard NCCN guidelines have not yet designated anyone as being in the category of "watch and wait", so some form of surgery is still deemed necessary for everyone, according to standard treatment protocols. Of course, for those of us in the middle of all of this, regardless of our view of the semantics, this discussion is going to be a bit unsettling.

There's another thread that was already started on this earlier today:  Topic: how to talk about DCIS

Here's what I posted there:

*****

For me the big problem with the "is DCIS cancer or is DCIS pre-cancer?" discussion is that the medical community lumps all DCIS together.  A small (less than 1cm, for example), single focus of low grade DCIS is not the same disease as a large, multi-focal high grade DCIS with comedonecrosis.  The first condition might never develop into invasive cancer; research seems to suggest that the majority of cases like that will remain DCIS for 20 to 30 years, and quite possibly forever. The risks associated with this condition are a lot closer to ADH than to an aggressive case of DCIS. The second condition is almost certain to develop into invasive cancer; from a risk standpoint this type of diagnosis is probably a lot closer to early stage IDC than it is to a low risk case of DCIS.

So lumping all DCIS together is one problem.  The additional problem is that while we know that size, grade and focality are three factors that are important in determining how threatening a diagnosis of DCIS may be, it is believed that there are other biological factors - as yet undetermined - that likely also play into this.  So at this point we don't have the medical / scientific knowledge to say with certainty which cases of DCIS are low risk, and which are high risk. 

I believe that this is the reason why there is no agreement within the medical community on whether DCIS is a cancer or pre-cancer.  Doctors who focus their attention on how we treat low risk cases of DCIS tend to believe that DCIS should be reclassified as a pre-cancer because these doctors see a lot of what they believe to be "over-treatment". But doctors who focus their attention on the more high risk cases of DCIS tend to believe that DCIS is early stage breast cancer and they worry that women with high risk diagnoses of DCIS might be under-treated if DCIS were to be reclassifed as a pre-cancer.

Personally I hope that at some point in the future, once we have a better idea of what biological factors make a diagnosis of DCIS low risk vs. high risk, a decision can be made to split DCIS into two different diseases, one that is classified as a pre-cancer and is given a new name, and another that remains DCIS and remains Stage 0 Breast Cancer.  We're just not there yet on being able to do this, from the standpoint of our understanding of the biology of DCIS.

*****

Since writing this, I saw the report on the NBC news and I've read the article in the NYT.  So let me add one more comment.  The idea that all DCIS can be 'watched' is - at this time - absurd.  In my case, I had mildly suspicious calcifications that probably wouldn't have been biopsied if these new proposals went into place.  And even if I got that initial biopsy, it showed just ADH and that would have been the end of my testing under these new proposals. The recommendation would be "let's just watch it now".  But instead, I had an excisional biopsy.  And that uncovered a huge amount of extremely aggressive DCIS and a microinavion of invasive cancer. Although my mammo showed some of my DCIS, it turned out that I had much more than was visible on the screening. I'm just one case but in my time on this board I've seen lots of women who've had similar results.  The simple unfortunate truth is that today, screening is not effective at telling us what is benign and what is DCIS and what is IDC.  And screening is not effective at watching DCIS and catching it at the moment it's about to become invasive. 

If we had the knowledge to distinguish between low risk DCIS and high risk DCIS, and if we could effectively screen and catch DCIS at the moment it starts to become more threatening, that would be wonderful and I'd agree wholeheartedly with what's being proposed.  But we are nowhere near being able to do those things today. This is a case of cart before horse.  If they go ahead with this, there is no question that some women who have invasive cancer that displays as calcifications will be told to go home and wait because "it looks like it's only harmless DCIS" and there will be consequences to that.

The objective with DCIS should be to reduce over-treatment and avoid under-treatment. For today, with the knowledge and abilities that we have, I think a more appropriate approach is to better educate doctors and patients about DCIS, so that those who have what appear to be low risk cases understand this and don't feel the need to over-treat. And so that those who have serious, high risk diagnoses understand this too and seek the appropriate treatments to avoid a more serious diagnosis down the road.   

By the way, while it's a new group that has come out with this recommendation today, this isn't new news.  This debate has been going on for years. In 2009 the NIH Conference on DCIS recommended that "strong consideration should be given to remove the anxiety-producing term "carcinoma" from the description of DCIS." This was followed by an extensive review by a large and distinguished group of cancer specialists from the American Cancer Society and the National Cancer Institute.  Their conclusion was interesting, in that they did not get into the "Is DCIS a cancer or a pre-cancer?" debate; instead they took a more practical approach, considering the impact of the name change and whether it's worth the effort: 

"...while a change in terminology may be worthy of consideration in the future, there are no data to support the contention that a name change at the present time will reduce observer variability in diagnosis, alleviate patient anxiety, or assist patients and clinicians in choosing among the various treatment options for DCIS, which will be the same regardless of the terminology used. Furthermore, a name change should not be viewed as a substitute for communicating what DCIS means in terms of prognosis and treatment options. Many believe that clinical usefulness and patient benefit should drive the efforts for changing DCIS nomenclature and that at this time, efforts should be focused on ensuring that pathologists provide as accurate and consistent reporting of DCIS cases as possible."   They did note that in Italy, DCIS is already now called "DIN, ductal intraepithelial neoplasia" however they didn't feel that this name was as yet widely accepted elsewhere. Challenges in ductal carcinoma in situ risk communication and decision-making

Edited for typos only.

CTMom... As mentioned earlier, this recommendation is not about money. Likewise, this recommendation is not about at what age patients should begin receiving mammograms. That argument continues to brew in the leading medical journals. This discussion is about what you call these screening image anomalies once they are found. Physicians and researchers now understand that only some cancers are life threatening. Unfortunately, as Beesie and I stated, they don't conclusively know which are and are not. However each day, they are getting closer to understanding the individual biology of one's tumors. So we need to begin thinking and understanding that the word "cancer" is too vague of a word to use to describe these diseases.

What constitutes DCIS is so idiosyncratic. Sure, they are detecting more of it from screening, but there are plenty of diagnoses (like mine) that arose from a smoking gun (bloody nipple discharge). To be frank, I find the tone of some of the quotes in the article (not any of the discussion on here), to be patronizing. The goal is to change the label of a disease so that women can be cajoled into not demanding overtreatment. What about those of us with high grade, ER negative, multifocal DCIS? Are we being overtreated? In the case of women who have "more benign" DCIS, are they unable to exercise prudent self autonomy regardless of a label? Is watchful waiting prudent self autonomy?   Until the technology is at a place where it can demonstrate which women can safely follow this path, it makes me doubt the credibility of any doctor who would recommend this to a patient. I agree that changing the conversation to be more nuanced and focused on the individual dynamics of each patient is an admirable and necessary direction where medicine needs to move, but "watchful waiting" is itself a recommendation that fails to take into account the dangers that still (unfortunately) exist.

Yes, but where does "watchful waiting" (monitoring in lieu of surgery) come into this discussion? The researchers at UCSF who are spearheading this namechanging discussion (and have been for years) are not just talking about changing vocabulary, but treatment and, if I understand their position correctly, they are advocating "watchful waiting" for certain women who are considered "low risk." But there is no way to know which women actually fall into that category...yet. I would love for there to be a day when all cancer treatment is individualized and considers a myriad of factors, from genetics to holistic interactions from other conditions and diseases. That's a great goal in general, as you say, across medicine regardless of the vocabulary, but, from what I understand, the recommendations from this particular group about relabeling DCIS are very much being made hand in hand with advocacy of watchful waiting. If an individual wants to select this course, that is his or her personal choice, but for a panel of experts to be out in the media discussing watchful waiting as a viable mainstream option (when the technology isn't there yet) troubles me.

It troubles me that the article says that most IF NOT ALL of these conditions will never develop into anything.  That may be the journalist's interpretation of it, but saying that in the media is problematic.  Personally, I tried and continue to try to do the least invasive intervention possible.  My DCIS was diagnosed by excisional biopsy, as the stereotactic bx only diagnosed ADH (which I'd had before and certainly would do absolutely nothing about).  It came out as high grade, multifocal DCIS with comedonecrosis and no clean margins.  I was thinking, given that they'd only found ADH in the core biopsy, that I would be a "renegade" if they found DCIS, and only do watchful waiting.  I also thought it would be low grade.  I went for an oncology consult, and asked about that option (watchful waiting), and was told "nobody would leave THAT in there."  So, I had surgery, fought doing a mastectomy, so it took three lumpectomies to get clean margins, due to the extent and multifocal nature of the pathology.  Then came radiation.  Again, I questioned whether to do it, and was told, by my Premier institution, that it really, really needed to be done, so I did that.  Now, of course, they want me on hormonal treatment.  They are worried about that breast and the other breast (family history).  For now, I am holding my ground, but even the radiation oncologist wants to see me in 6 months because the surgery follow-up is a year.  I had to, separately, tell three members of the team that I'm holding off.  Maybe this final step would be overtreatment.  Maybe they all were overtreatment.  I just don't know.  Let's just say that Larry Norton works at my institution and his views were in the article (as a good counterpoint).  I also knew, from the beginning, that DCIS is not cancer.  When my original surgeon, a general surgeon, called to say, and I quote:  "It's cancer", I responded, "Cancer or DCIS?" whereupon he stated: "DCIS is cancer."  And so it goes.......

VR, I know that you are very familiar with Dr. Brawley and your interpretation of the proposal is based on how Dr. Brawley looks at things.  I agree with his approach, in that he believes that patients and doctors need to focus on the specific characteristics of the individual's disease.

Dr. Brawley was quoted in the t.v. reports about this study, but he in fact was not involved with it at all.  He was not one of the authors and he was not a participant in the working group.  The lead author on this study was Dr. Laura Esserman, and her perspective, at least when it comes to DCIS, is well reported and quite different (I believe) than Dr. Brawley's.  So I am not interpreting the intent of this report as favorably as you are.

I've gone through the report and a couple of things stick out.  Overdiagnosis and Overtreatment in CancerAn Opportunity for Improvement

First, the recommendation to reclassify DCIS starts with an explanation that "Screening for breast cancer and prostate cancer appears to detect more cancers that are potentially clinically insignificant."  Here's the data that is presented to support this:

.                           Incidence per 100,000                     Mortality per 100,000

.                               1975             2010                         1975           2010

Breast Cancer         105.07          126.02   +20%           31.45           21.92   -30%

Prostate Cancer          94             145.12   -54%            30.97           21.81   -30%

This is the only data presented in the whole report, although the references on this particular point (i.e. supporting the contention that more potentially insignificant cancers are detected by screening) also include an article from 2009 that was authored by Dr. Esserman.  The full text of that article is unfortunately not available so I can't see if there is any more data in there. 

My question / confusion about the data is that couldn't it also be interpreted to say that breast cancer and prostate screenings are finding more cancers at an early stage that are being successfully treated and that's why the mortality rates are declining?

The other thing in the article that has me somewhat concerned (or at least uncertain) is the following statement:  "Use of the term “cancer” should be reserved for describing lesions with a reasonable likelihood of lethal progression if left untreated. There are 2 opportunities for change. First, premalignant conditions (eg, ductal carcinoma in situ or high-grade prostatic intraepithelial neoplasia) should not be labeled as cancers or neoplasia, nor should the word “cancer” be in the name. Second, molecular diagnostic tools that identify indolent or low-risk lesions need to be adopted and validated. Another step is to reclassify such cancers as IDLE (indolent lesions of epithelial origin) conditions."

To me, this is not saying that we first need to do our homework and determine which types of DCIS are indolent or low risk and then we can reclassify them.  This isn't saying that some types of DCIS should not have the word "cancer" in the name.  This is saying that was a first step, DCIS (i.e. all DCIS) should be reclassified. 

Perhaps the author was not careful in ordering these points and she really meant that first we need to determine which cases of DCIS are high risk vs. low risk, and then we can reclassify only the low risk cases.  I might believe that, if not for everything else that I've read from Dr. Esserman.

With DCIS, the "bulk of what we find is not high grade" Dr. Esserman explained to Medscape Oncology in an interview. She noted that only high-grade DCIS is likely to progress to invasive breast cancer.

100% factually untrue.

"If it doesn't look like high-grade DCIS, we should leave it alone. We would eliminate two thirds of all biopsies if we did," Dr. Esserman said.

Hmmm... how do you know from a screening mammo if it looks like high grade DCIS?  Mine didn't, and even my needle biopsy only showed ADH, yet I turned out to have high grade DCIS and a microinvasion.

Less than 5% of DCIS turns out to be "something else," including invasive cancer, said Dr. Esserman.

Again, 100% factually untrue.  In actual fact, after surgery it turns out that approx. 20% of DCIS turns out to be "something else", i.e. invasive cancer.

"...investigators at UCSF have gone ahead and are investigating what has been called "an important first step in the direction" of active surveillance for DCIS...

...From preliminary results from 23 women, the UCSF investigators concluded that "further work is needed to identify which women may be the best candidates for such treatment for DCIS and whether best responders may safely avoid surgical intervention."...

...Regardless of the final findings of this pilot study, Laura Esserman, MD, MBA, professor of surgery and radiology at UCSF and an investigator in the study, thinks the time is now to discuss a change in the approach to DCIS. "We should be demanding change," she told Medscape Oncology.

Seriously?  A very small study on active surveillance for DCIS is not providing all the results expected, yet Dr. Esserman says that "regardless of the final findings" she thinks changes to the nomenclature and treatment of DCIS should be made anyway?

Source of these quotes:  Take Carcinoma Out of DCIS and Ease Off Treatment

As an FYI, here is the data from Dr. Esserman's active surveillance study:  Of 23 women who took hormone therapy for 4 years prior to having surgery, 2 (9%) developed IDC (1.2cm and 1.8cm; one initially had what was thought to be only grade 2 DCIS) and another 2 (9%) developed a higher grade of DCIS.  On the positive side, 5 of the women (22%) saw a lowering in their grade of DCIS and 2 (9%) were downgraded from DCIS to ADH.  So hormone therapy in place of surgery clearly might be effective for some women with DCIS, but the problem is that at this point we don't know which women with DCIS can safely follow this path and which women may face significant risk instead.  Pathologic and biologic response to preoperative endocrine therapy in patients with ER-positive ductal carcinoma in situ  But Dr. Esserman wants to make the changes in how we approach DCIS now, regardless of findings of the study!

That's it for now!

 Beesie 

Actually, the word that the news said they wanted to remove was "carcinoma".  They want to change Ductal Carcinoma in Situ but I don't remember them saying what new term they would use.  I wonder if pre-malignant lesion in situ would work.  Nothing has really changed but I got the impression they want to quit scaring the crap out of women. 

I am suspicious of statements, studies, etc. that advocate less treatment and there have been a few of those lately for other conditions. We are probably better off now when they throw the book at the disease and scale back if the diagnosis warrants.

Infobabe, yes, I know that they are proposing the removal of the word "carcinoma".  But in your earlier post you said that "By definition, DCIS is not malignant."  That's what I was addressing in my last post. It all depends on how "malignant" is defined.

This renaming proposal has come up many times before.  I mentioned in one of my earlier posts that in Italy DCIS is called ductal intraepithelial neoplasia (DIN), and this is one name that I've seen proposed before.  But the current group want to avoid the word "neoplasia" as well. What is proposed in the current report is that low-risk lesions be reclassified as as IDLE (indolent lesions of epithelial origin) conditions.  I don't know if the plan would be to put all of DCIS into the "IDLE" category or just some DCIS.  IDLE conditions would include much more than just DCIS - the plan would be to plop high-grade prostatic intraepithelial neoplasia, and other types of early stage "cancers" into the IDLE category as well - so it would appear that there would need to be some other name specifically for DCIS. I have not seen anything proposed. 

Infobabe, if you read the report that was released yesterday, you'll see that the latest proposal suggests more than just changing the name so that we stop scaring the crap out of women.  The report proposes the following:

"Mitigate overdiagnosis. Strategies to reduce detection of indolent disease include reducing low-yield diagnostic evaluations appropriately, reducing frequency of screening examinations, focusing screening on high-risk populations, raising thresholds for recall and biopsy, and testing the safety and efficacy of risk-based screening approaches to improve selection of patients for cancer screening."

So yesterday's report includes the suggestion that screening be changed/reduced and the number of biopsies be reduced so that we don't diagnose as many cases of low-risk DCIS. As per the quote that I provided earlier, Dr. Esserman believes that when low-risk DCIS appears on a mammogram, no biopsy is necessary.  The little hitch that she neglects to mention is that when calcifications appear, we have no way of knowing if they are benign, ADH, low risk DCIS, high risk DCIS, or even IDC.

In my last couple of posts I've been arguing against yesterday's report.  But the truth is that I agree that too often a diagnosis of DCIS does scare the crap out of women.  And I agree too that some patients - and some doctors - overtreat low risk cases of DCIS because they are scared or because they go by the book ("if you have a lumpectomy, you must have rads").  Every treatment comes with risks and sometimes these over-treatments negatively affect women for the rest of their lives. If a treatment is necessary because of the risk from the disease, that's one thing.  But when the diagnosis is a tiny, low grade, low risk case of DCIS? 

So I agree that there is a real issue here that needs to be addressed. I simply don't believe that the answer is to change the name of the disease, at least not until we know enough so that we can separate out high risk cases of DCIS and then reclassify only the low risk cases of DCIS.  If we reclassify all of DCIS to be an IDLE condition today, will women who are told that they have an aggressive case of "IDLE" agree to surgery or rads? Wouldn't a reclassification today just replace over-treatment concerns with under-treatment concerns?

I think the answer for now is to better educate doctors and patients so that fewer women are scared by their DCIS diagnosis.  And I think it's important that the medical community never discuss DCIS without clearly explaining that it is a heterogeneous disease in which some cases are low risk and require little treatment, while other cases are high risk and need to be treated like a early stage invasive cancer.  That's the message that needs to be communicated over and over and over again, until everyone gets it.  Then it won't matter what we call DCIS.

Edited to add:  redsox, we were posting at the same time.  I see we had similar thoughts about "IDLE" and how that might affect treatment choices.

Exactly redsox, Heart2930 and Beesie! We can speak in generalities about not worrying women, minimizing treatments, and saving medical dollars, but we are not yet at the point of knowing which dcis to "watch and wait" versus "remove." I'd stated this earlier, but this announcement brings back memories from three years ago when also in the interest of not worrying women, minimizing treatments, and saving medical dollars, my demographic (I was 44 with zero family history or known risk factors) was being advised to wait on mammograms until age 50. 

My grade 2 dcis diagnosis did scare the heck out of me when my bs said it was cancer, but what scares me even more is the thought that one with my profile might be advised to "watch and wait." I passed all my subsequent tests (BRCA, ultrasound, MRI) with no signs that I had anything more than IDLE. And no comedo, no grade 3, not multi-focal....

but I did.

And "overtreatment" in my case was better than waiting. IDLE seems like the wrong name for cancer, which is what I believe is dcis.

Today, we are already using a vocabulary to describe tumor cells that were not in our vocabulary twenty years ago. We label breast tumors by their properties. Today we call tumors "triple positive, "triple negative," "luminal A," or "luminal B." Without a doubt physicians and researchers are still not close to accurately predicting which non-invasive tumors might turn aggressive and that concerns many DCIS patients. The fear of under treatment is real. However, those of you who have already had a DCIS diagnosis are quite aware of what you are dealing with. Likewise, most patients with invasive tumors have their own concern with respect to under and over treatment. But from our collective experiences we are all enlightened. However, what physicians are trying to do is enlighten those individuals who haven't been diagnosed and those who are recently screened and are first finding out they have cancer. Two weeks ago a neighbor of mine found out she had DCIS and was so frightened. Since then, she has learned more about her tumor and seems calmer now that she has a treatment plan. However, on Saturday her husband called me and asked me to call her because she needed to be talked off the ledge! It seems as she told friends about her diagnosis, according to her husband, the friends seemed to give off the vibe that she would be soon dead and buried! We are all enlightened now because WE have all gone through this collective experience of finding out that we had something wrong with our breasts. And we all know now about under treatment and over treatment as it relates to each of our own diagnoses. But the bottom line is....as much as the month of October is plastered with breast cancer awareness....most women are ignorant when it comes to the word breast cancer. I know now that before I was diagnosed I knew NOTHING. I knew of friends who died from breast cancer. But I knew nothing about the fact that there were many types of breast cancer. I didn't know that within the breast cancer community of researchers and clinicians that there were fault lines with respect to imaging and treatment. I had no clue what Stage 0 was despite knowing of an acquaintance who had it. Outside of my immediate family I have only told a few people about my diagnosis. The reason why was twofold and simple. One, I didn't have the strength to convince people that I would probably be okay. And two, I didn't feel like having to give a tutorial on mucinous breast cancer. Who knew there was a thing called "mucinous" breast cancer? Wasn't all breast cancer the same? Cancer is cancer! Isn't it? No. It's not! So going forward, we're all are going to have to get used to the idea that when the dust settles, our vocabulary to describe our tumor cells is going to continue to expand. Where that takes us, no one can say with certainty. Just like they don't know with certainty which DCIS will become invasive or which invasive tumor will metastasize... the learning curve is messy!



And if anyone really wants to fully understand the issue of over and under treatment, they should read Dr. Brawley's book or watch the youtube video of him before the heathcare journalists. They were a tough crowd to speak to and they gave him a standing ovation. Eric Topol, MD's book, The Creative Destruction of Medicine gives the reader a glimpse of where medicine is heading...

my surgeon told me after seeing the first mamo...don't worry, I do not see surgery, radiation or chemo in your future.

since I ended up with grade 3 DCIS with lots of comdeo, surgeon took 3 lumpies to clear me for rads, yeah, was I gonna do watchful waiting?  NO way.  Then again, I am 5 years out and doing well so glad I did it.  I am not patient and have enough BP issues as it is

Voracious, you mention Luminal A and B, as well as Triple Positive and  Triple Negative.  I think that these issues will actually also impact on DCIS at some point.  My DCIS had low estrogen responsivity and no progesterone.  I think if it were IDC it would be Luminal B, and therefore potentially more aggressive.  As of now, where I am treated, they don't even measure progesterone responsivity in DCIS (mine was done elsewhere after the first surgery).  I was told that the absence of progesterone and low estrogen responsiveness would be relevant for IDC and not for DCIS, just as Her2 is most often not assessed, and not YET considered relevant for DCIS.  Well, I think these kinds of characteristics may ultimately be predictive of potential for invasive disease in DCIS, and whether to intervene and by how much.  Meanwhile, I hope the current message from Dr. Esserman doesn't encourage people to take a watch and wait plan for all DCIS.  That would be a mistake.