Summary of Vol 102 Issue 3 Interview Transcript
Adam Weiss: Welcome to the JNCI Podcast, a production of the Journal of the National Cancer Institute. I'm Adam Weiss.
Adam Weiss: Back in September, the National Institutes of Health hosted a State of the Science conference about ductal carcinoma in situ or DCIS. This condition is sometimes called Stage 0 breast cancer because it's by definition non-invasive. The conference discussions were pretty lively and the ideas that came out of the meeting could change the way DCIS is studied, treated and what newly diagnosed patients are told about their disease. We could even end up with a new name for it. To give us an inside look at the conference, I have Dr. Joann Elmore on the phone with me from the University of Washington Medical School where she's a professor of medicine. Dr. Elmore helped plan the NIH conference and was a speaker there. Welcome, Dr. Elmore.
Dr. Joann Elmore: Thank you.
Adam Weiss: Before we get into the conference, the audience for this Podcast could really include anybody. So just to make sure that we're all on the same page for the discussion, could you give us a quick recap of what DCIS is?
Dr. Joann Elmore: DCIS is not the same thing as invasive breast cancer. DCIS is a non-invasive lesion. When you look at the specimen under a microscope the cells do look abnormal but they have not invaded past the lobule, the duct walls. And because they haven't invaded, they are not invasive breast cancer. DCIS does have the term carcinoma and I think that that sometimes leads to a bit of confusion and some wonder if it isn't the same thing when they hear the word carcinoma. But DCIS is not the same thing as invasive breast cancer.
Adam Weiss: So this abnormality, whether you call it a carcinoma or not isn't very serious for most people, it stays put for the most part and almost everyone who gets treated for it survives quite well for a long time, right?
Dr. Joann Elmore: Right. Well one of the reasons they had the conference to review the scientific data is that women with DCIS some of them will progress and ultimately be diagnosed with invasive breast cancer. And the risk factors for DCIS and invasive breast cancer are similar. The challenge we have, even after reviewing all of the wonderful literature and data on the topic is that we cannot identify which woman with DCIS is the one that is at the highest risk to ultimately be diagnosed with invasive breast cancer, 5, 10, 15 years later. And because of that, women with DCIS at least in the United States are opting for treatment that some are concerned may be over treatment. Most women with DCIS are treated either with a lumpectomy and radiation therapy or with a mastectomy.
Adam Weiss: So people get this diagnosis and they feel like they're in danger and they want to do something about it. Now one of the reasons to have this conference was that the medical community doesn't know whether or not some of the more drastic actions are necessary.
Dr. Joann Elmore: That's correct. When you look at the treatments that are received by women with a diagnosis of DCIS they are very similar to the treatments that are received by women with Stage 1 invasive breast cancer. In other words, women are having mastectomies, you know, this is very similar, very thorough treatment. And, you know, the sad thing is that we cannot identify which women this could be over treatment and which women this might be helping.
Adam Weiss: So why don't we know more about DCIS at this point? The way I understand it, it was first named almost 100 years ago. It's become more and more prevalent in terms of diagnosing it but we still don't know a lot about it.
Dr. Joann Elmore: Well, you've asked an important question. You know, why don’t we know which women are going to on to have invasive cancer and which aren't? If you think about it, almost all the women in the United States, they're getting treated. We don't know whether they should or not, but they are getting treated. Because of that we are not able to follow a group of women that have DCIS that do not get treated over 5, 10, 15 years to see the natural history. And we do not know the natural history of untreated DCIS. Every women, I think understandably they may feel like a time bomb, they're anxious, they, you know, want to have some sort of treatment. They feel that they're at risk and indeed they are at risk.
Adam Weiss: We just don't know how much risk in this case.
Dr. Joann Elmore: Exactly.
Adam Weiss: That's one of the reasons why the conference was convened. Can you tell us about your role in the conference?
Dr. Joann Elmore: Sure. Well, I was on the Planning Committee and also was one of the invited speakers. And I think it was an exciting meeting to attend to see this group of international experts that are all committed to helping patients. One of my concerns as we planned the committee though was that in the end it would lead to an awful lot of questions. In other words the data exist but there are many limitations to what we know. You know, for example we don't know the natural history. All women are getting pretty much treated for DCIS. And so I was concerned that at the end of this wonderful meeting we would have a list of research questions that are extremely important and need to be attended to, but that I was worried where this would leave women. And I think that women need to deal with this diagnosis now and that one of our jobs is to help them understand what the diagnosis is and help them make informed medical decisions that are right for them.
Adam Weiss: And I know that you spoke about that at the conference. So I want to focus on that more thoroughly in a minute or two. Before we get into those specifics, what were the overall outcomes of the conference, questions or otherwise?
Dr. Joann Elmore: First of all, it is important as a scientific community to every once in a while step back and pause and contemplate, collect all of the existing data and review it and that's what was done. There was a phenomenal cast of individuals, scientists giving presentations and there was also an invited structured literature review published in JNCI. And this review by Dr. Beth A. Virnig and others, basically it's a systematic review of the incidents of DCIS. They reviewed treatments and evaluations such as MRI scans and sentinel lymph node biopsies, what sort of treatment options there are for women and the outcomes. And it is very helpful I think as a scientific community to step back and review the level of data and also to see where there is no data existing and where we have potential problems with the data.
Adam Weiss: I was actually surprised when reading that paper that you talked about how many of the questions and how many of the sections said, "We don't know enough about this."
Dr. Joann Elmore: Right. I think that this paper did a marvelous job reviewing the existing literature. But you are correct, I think in reviewing it, it basically pointed out many questions. I think more so the summary of the actual meeting that is published by Dr. Allegra also as they review the key questions that were asked by the panel that convened the meeting, you'll see that there are many research questions after each question indeed. And they did a good job at the end of this in saying there are many, many questions but we will synthesize all of them into five main categories. And these are areas where they felt additional research is needed.
Adam Weiss: And those categories included standardized reporting of DCIS, a research database to help analyze that reporting and more study of the risks to better advice patients on what to do. But I assume the most interesting recommendation to you are the ones that look at what happens after a diagnosis of DCIS, especially the recommendation that research be done on patient provider communication and treatment effectiveness. You must have thought those were pretty important especially since you came to the conference to talk about communication.
Dr. Joann Elmore: Yes. And indeed it's important for a large number of women. Right now more than one half million women in the U.S. are living with a diagnosis of DCIS.
Adam Weiss: So from the conference and your personal experience, what steps can we take to improve communication about DCIS?
Dr. Joann Elmore: Well I think it helps to start first by thinking through all the different barriers to effective communication. To start with there's just an awful lot of fear of cancer, there's a heightened sense of women and people in the U.S., we don't like the word cancer. I think that the media has been very influential in educating individuals and perhaps heightening the fear. There's often a sense of sensationalism. I also think we have a barrier when we try to use numbers to communicate. I'm not going to use a lot of numbers in talking with you today. It's thought that, you know, we have what's called numeric illiteracy. And this not even just in our patients. You know, they've done studies to ask adults questions such as how many heads in a 1,000 coin flips. And that's a pretty simple question, but more than half of the adults would get that answer wrong. But I've done studies of physicians and find that even physicians have a hard time with numbers, especially when you're considering risks. I surveyed a group of radiologists working in breast imaging and asked them, you know, what a woman-- a specific woman's risk of breast cancer was in the next five years. And more than 95 percent of the participating radiologists overestimated the risk and they markedly overestimated the risk. And there's the issue of the word carcinoma and that can scare women. And that was definitely something that was discussed at the meeting.
Adam Weiss: I think I saw the words, "lively discussion" used to describe that. There's some controversy there, isn't there?
Dr. Joann Elmore: It was interesting at the meeting, there really was a flurry of comments from participants at the meeting and while I don't think the panel had thought that they would, you know, even consider nomenclature, it was something that the panel members decided that they need to give some emphasis to. And in the paper that is published summarizing the panel members, you know, review of the topic and of the meeting by Dr. Allegra, I'll quote, they said that, "Strong consideration should be given to elimination of the use of the anxiety producing term carcinoma."
Adam Weiss: I know if I was at the doctor's office and I was told, you have something with the word carcinoma in it, then I'd be pretty scared. But I know there was a problem at the conference with people thinking that having a scary word in the name of a disease is not enough reason to change that name. Would the change happen because carcinoma is scary or because it's inaccurate?
Dr. Joann Elmore: Can I say, all of the above.
Adam Weiss: Okay.
Dr. Joann Elmore: Indeed it's-- one of the I think reasons that there are strong proponents for the name change has to do with the psychology and the anxiety that is provoked by the term carcinoma. And it's sort of a psychosocial argument. There is data that women with DCIS, they do have increased anxiety and women with DCIS do overestimate their chance of a recurrence and so that is one of the reasons. But other reasons that the proponents of a name change have cited include first of all, the name DCIS, it represents a whole spectrum of pathology from very mild indolent to, you know, higher grade that, you know, might have a much higher risk of an ultimate diagnosis of invasive cancer. And I think this gets at the challenge and the importance of better risk stratification. The other comments that were made by the proponents of a name change are that they thought that if this diagnosis no longer has the word carcinoma that women might make what they call more rational decisions when it comes to treatment. And this has to do with the concern by many attending the meeting that we are over treating women that are diagnosed with DCIS. You know, some women are so alarmed and concerned, that they just want to have the whole breast taken off. And in fact some women are so alarmed that they want to have the other contralateral breast removed prophylactically [ph?] and the use of contralateral prophylactic mastectomy for DCIS in the U.S. has markedly increase
So this isn't just something that, you know, I'm hypothesizing, it's something that is happening. Now for those that were against the name change, they were also quite vocal. They felt that getting rid of the word carcinoma, it downplays this disease and they worried that women might become complacent. Now I think if there's any even word abnormality related to the breast that women-- it's very unlikely that they'll become complacent but this was one concern. And one internist I think stood up at the meeting and said that, you know, the word carcinoma, it gets women to listen to him more closely.
Adam Weiss: Well, whether the name gets changed or not, it sounds like there's more work to be done, both on the medical community's understanding of DCIS and on ways to help patients understand it. Fortunately, it sounds like this conference was a step in the right direction for both goals. Thank you very much for telling us about it.
Dr. Joann Elmore: It's my pleasure and I think all of the members of the panel and the participants feel the same way. It's an important topic and we all want to help the patients.
Adam Weiss: And thank you for listening to the JNCI Podcast. For more interviews, audio summaries of JNCI issues and more information about today's topic, visit jnci.oxfordjournals.org. To get in touch with us, send an email to email@example.com or follow us on Twitter, we're at jnci_now. If you liked this episode, please share it with your colleagues and friends. I'm Adam Weiss. Thanks again for listening.
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Carmen J. Allegra
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