News: DCIS shouldn't be called cancer?

I agree, I had IDC/DCIS Stage1 Grade1, my Oncotype score was 34 according to path report. I think the PR- has something to do with the high Oncotype score.

Carol, I couldn't access the full text of the article but I found another article where the authors discuss their findings.  It is what I suspected when first I read your excerpt.  They appear to be talking about the signficance of margin size (or more to the point, the lack of significance of margin size) primarily for invasive cancer, not for DCIS. 

There are two points that are relevant to this.  First, most often (but not always, of course) invasive cancer tends to form as a lump and stay in a single location.  IDC starts as a tiny mass of cells and then as the cancer cells multiply, the mass gets larger and larger.  DCIS is different.  DCIS is confined to the milk ducts.  The normal path of expansion of DCIS is for the cancer cells to spread out further and further within the duct. And sometimes - particularly with grade 3 DCIS - it may 'skip'.  In other words, there might be line of DCIS within the duct, then a small space, and then the DCIS starts up again. Sometimes the space is larger, and that's when we find multi-focal or multi-centric DCIS.

It's because of the nature of how DCIS spreads and expands that we find that more women with DCIS actually need to have a MX due to the size of the area of involvement with cancer vs. women who have IDC. It's not unusual to find areas of DCIS that are 6cm or greater in size (as mine was), and it's not unusual for DCIS to be multi-focal.  We're much less likely to find that with IDC.

The second issue is that the treatment for IDC may be different.  Here's what one of the authors says: "But an even more important factor in the lower recurrence rate is that patients typically get systemic therapy, in addition to radiation therapy, for invasive breast cancer. “There seems to be a synergistic or additive effect between radiation and chemotherapy or hormonal therapy in reducing the risk of local recurrence,” Dr. Schnitt explains. “Patients treated with the combination of a lumpectomy, radiation therapy, and systemic therapy have lower local recurrence rates than patients who get a lumpectomy and radiation therapy without systemic therapy.”"  DCIS patients of course don't ever get chemo, and because they don't face the risk of mets, the argument for taking hormone therapy is less compelling so more DCIS patients pass on hormone therapy.  Without those treatments, in addition to rads, wider margins are necessary.

Here's another quote from one of the authors: "Not all patients require the same margin distance in order to get optimum local control, especially in this era of systemic therapy being added to radiation therapy, he says, pointing out that the likelihood of a heavy residual tumor burden in the breast varies according to the histologic type of the tumor and the extent of disease in proximity to the surgical margin. If a patient is not going to receive radiation therapy, “then you need a wider margin.” And there are other circumstances in which that’s true as well. “We know from clinical followup studies that some patients need a wider margin and those patients include those whose invasive cancers have a prominent component of DCIS, perhaps some patients with invasive lobular carcinoma, and some patients with pure DCIS, particularly those who are going to be treated with lumpectomy without radiation therapy.”"

Here's the article I found that talks to all this: On lumpectomy surgical margins, a push for clarity

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Reading some of the recent comments in this thread, I think as we have this discussion about DCIS and what it should be called and how it should be treated, it's important that everyone remember that this is a discussion about pure DCIS, i.e. Stage 0 DCIS. This is not the same as when someone has DCIS in their pathology along with IDC. Most IDC develops from DCIS so ~80% - 90% of women with IDC will also be found to have DCIS.  In those cases, the diagnosis is not "DCIS", it's IDC. The DCIS really doesn't count, except that it needs to be removed.  The treatment plan is based on the IDC. So as we discsuss possible changes to DCIS nomenclature and treatment, remember that this is for pure DCIS only.  The challenge for the medical community is that right now we have no way to know who has pure DCIS and who has a DCIS/IDC combination without full surgical excision.

I've been following this thread with great interest. Even two years into life with bc, I am constantly amazed by how multifaceted and complex this disease is. When I was first dx'ed, I was told I had DCIS and IDC. "You mean there's more than one type of bc ?", I asked. How woefully naive I was.

Caryn

Loral, not sure why you deleted this post... It is a terrible story, really horrific to hear for all of us who have been on wrong side of a cancer diagnosis. Thank you for sharing it, it should be a warning to all of us that if anything in our management team's decision making is unclear or illogical then a second opinion is the right thing to do.

Annice

kayb, this is such a reminder of how much care is needed to read and interpret study language. I'd say that I for one need more practice!  

Now I'm mulling another question: if BC is a systemic disease, what role does the surgical margin really play?

So, some but not all BC is systemic...but the 'not all' --i.e. DCIS --can sometimes 'become' IDC, which I interpret to be indeed, systemic?  Confusing does not begin to describe all of this.  Ballet, thank you for your insight.  Lots to think about. 

Kay, unfortunately I wasn't able to access the article.  Do you have a link to it?  I'd love to be able to read it.

My interpretation of the article was based the comments of Dr. Schnitt (one of the authors) rather than the article itself.  The quotes I provided in my earlier post were his words.  I appreciate that DCIS probably was not specifically excluded from the discussion but when you read what Dr. Schnitt says about situations where margin size might not be relevant, it seems that DCIS often doesn't meet the criteria.  And when he talks about situations where larger margins are necessary, he specifically mentions "invasive cancers have a prominent component of DCIS" and "some patients with pure DCIS".  So he is acknowledging that there is something about DCIS that makes it different and therefore more likely to require re-excisions if margins are not acceptable.    

Thinking about it some more, I can see situations where margins wouldn't be particularly relevant for DCIS. If someone has a small, single focus of DCIS and comes out of surgery with just the tiniest surgical margin  - let's say 0.05mm - the choice for the patient might be rads plus Tamoxifen, or a re-excision to achieve wider margins.  Personally in a case like that, I'd pick the re-excision any day.  And with wide margins, I'd then gladly skip rads and Tamoxifen.  But for someone who feels more comfortable having rads and taking Tamoxifen, I can see that there might be no need to have the re-excision. The issue with DCIS, however, is that it's difficult to know if there really is just a small single focus of DCIS - particularly for those who have grade 3 DCIS.  So while there might be some cases that fit the bill - particularly when there is just a tiny amount of low grade DCIS - I think the types of situations that meet the criteria that Dr. Schnitt lays out are a lot less likely to be found with DCIS than with IDC.

It sure seems like hormone therapy might appeal to some women who had a localized BC but wanted to lower the risk of a new primary appearance. Is it ever prescribed for that reason?

The reason I ask about systemic is that my own experience with LCIS raises questions about that. It's not cancer, but it signals that something is brewing that creates a good likelihood that cancer will materialize elsewhere in the ipsi- or contralateral breast. And it's multi-focal. I had a 3-lesion biopsy and LCIS was found incident to all three, and my BS felt confident that had more biopsies been performed, more LCIS would have been found. An acquaintance last year had her first screening mamm at age 40, and DCIS was found in each breast.  It's hard to believe that there's not something systemic going on in both cases. I'm not arguing for hormone therapy for all, just imagining the real challenge is to figure out what's allowing conditions to be ripe for 'the system' to allow cancer to develop. Clearly it's not always hormones.

Carol, hormonal therapy IS prescribed for DCIS patients to lower the risk of a new primary (as Beesie noted). My RO told me that she pretty much significantly reduced the chance of recurrence in the ipsilateral breast with radiation, but was worried about a new primary in the contralateral breast due to family history.  She saw the value of my taking the hormonal being particularly for potential issues in the other breast.  There are many factors that put women at continued increased risk to the other breast and the ipsilateral breast for new primaries.  Genetics and family history are one big issue.  Pre-invasive breast conditions such as LCIS and ALH do put one at risk for primaries in both breasts (as does DCIS), but how much risk that actually is probably depends on many factors, again genetics being big (as in your case).  Lobular changes are also apparently difficult to find on imaging, so that ILC is often picked up in a more advanced state.  So, yes hormonals would protect against disease in both breasts and hopefully prevent invasive disease.  There is so much complexity to this.  Beesie has cited research that indicates that Tamoxifen, while protecting against ER positive bc can also increase the risk of ER negative bc. I wish I weren't so lazy or more computer savvy, and then I'd find the link for you on this!

When I heard the story of the NCI discussing this issue it truly upset me. I am 4mos out from a DMX for DCIS, I took both because I don't want to go through the psychological turmoil and anguish of "watch and wait", go through multiple more mammograms, painful biopsies, and waiting on path results, etc. I think until we know definitively which DCIS cases morph into a more deadly form, we cannot remove it from a cancer list. 

I was stage 0 intermediate DCIS. I still struggle emotionally with the am I survivor? Am I not worthy of that? Did I just dodge a bullet? When I was told that my DCIS was more extensive than they thought after MRI, (it was all along my duct not just the lone papilloma they had thought), I knew I wanted it gone, and no chance of even starting on my cancer-free side. 

This opens up the door of insurance companies not paying for certain procedures. While there might be a law regarding the mandate for them to cover mastectomy/reconstruction, it gives them the power to fight coverage and deny your claims. I think going through a potential cancer diagnosis is mentally exhausting enough; to have to fight an insurance company based on your decision is a whole other ball of wax.

What also clinched my decision for me is having all of my surgeons, the pathologist, the radiologists-all describe my DCIS as malignant. I was a BiRads 6. As it stands now with the medical community, it was cancer. My breast surgeon is one of the best out there-she said she would have had a DMX too with this diagnosis; she called it cancer. I too am a provider (NP). If my colleagues are in that mindset and that is what their training and experience has shown/told them, then I think that is where I hang my hat. 

Just my own opinion here.....but the psychological and emotional toll of DCIS, and not knowing for sure, and downplaying the stress that women go through while decision-making is something the NCI has failed to take into consideration. It's too early to know and the research just isn't there yet to start making these recommendations.  There are studies out there that validate that breast cancer survivors who had DCIS (are they survivors?) did have some degree of PTSD. We cannot downplay the psychological impact this has on our lives. Hearing that they may say that what I went through was overkill, really really upsets me. 

Thank you, Beesie.  I have now saved that article, and can pull it up next time.  It sure gives one pause about going on Tamoxifen for "prevention."  I hope they don't find the same scenario for the AI's, although the biochemical mechanism of the AI's is somewhat different (Tamox blocks estrogen whereas AI's get rid of it--crudely speaking).

Thank you, Beesie. That's a very eloquent explanation of systemic vs. non-systemic. And...it makes me wonder about the value of dietary and exercise improvements (lots of anti-oxidants and lots of exercise!) that are touted for their anti-cancer or (some suspect) cancer prevention benefits. Those two would be systemic strategies not limited to the breast. It would be hard to say there's no benefit from good diet and from exercise, to those with DCIS hoping to avoid a second primary, or those with LCIS hoping to avoid a primary. I get that DCIS and LCIS are confined to the breast, so not systemic, but still, what's going on in 'the system' that allows a nascent cancer cell to get a wedge and grow, whether in situ or invasive by nature?

I really did not intend to hijack the great is-DCIS-cancer topic of this thread, so truly there's no need to help me sort out my further musings here.  Thanks to all of you for such well written and informative posts. I'm learning tons here, which is helping me to support good friends at this time. I also want to be well armed in case my adult daughter ever has to confront the family disease.

Regarding Dr. Li's study that long term use of Tamoxifen would increase the risk of a more aggressive disease, he commented when the landmark ATLAS study was released last year and his opinion was the same. While there was an increased risk of endometrial cancer associated with longer term usage of Tamoxifen, he still thought Tamoxifen's use for certain cohorts of patients was an important part of treatment. However, since the release of the study, to my knowledge, those specific groups haven't been identified other than saying that now physicians can feel more comfortable recommending Tamoxifen for a longer period for premenstral patients with invasive disease. I've seen the latest study recommending Tamoxifen for patients with DCIS whom doctors think are at high risk of return or increased risk of an invasive disease.



So whether or not a patient has invasive or non-invasive disease, the treatment decision is often made difficult because one needs to measure where they "fit" with respect to who exactly are the studies referring to AND once they figure out how the study applies to them, then they must decide how much benefit they may derive from a treatment based on their personal risks and comorbidities. These studies also illustrate the need for more biologically based clinical trials. So for example if the ATLAS was done in coordination with the Oncotype DX test, then patients like myself could refer to my score and then compare it with how ATLAS patients with similar scores did. The TAILORx trial was designed exactly like that...measuring how well patients did with chemo based on specific scores with the ultimate goal of giving more information to patients in the dreaded intermediate range of the Oncotype DX test.



This leads me back to what I said earlier. We are now beginning more biologically based studies and our vocabulary is just beginning to match that vocabulary. Will we be able to neatly say who is at low and high risk of disease returning and then base our decisions more easily and more accurately? I don't think we are even close to that time yet. But that doesn't mean we shouldn't try to move away from a vocabulary that we've been using for the last 50 or so years.



And one more thing that hasn't been discussed here is that most of the industrial countries like ours have similar breast cancer mortality rates to ours and they do less mammography screening than we do. Again, I am not referring to diagnostic screening. I am referring to annual or bi-annual mammography in asymptomatic patients. The bottom line for me is, as it is for the authors of the study is that we need to appreciate both the benefits and risks associated with mammography and need to consider using a new precise vocabulary that will help us in the long run make better personal treatment decisions.

Getting back to Beesie's earlier post about the use of hormonals, for invasive breast cancer, I will copy her statement:

"Hormone therapy is a bit different because it is approved for 3 different indications:

1) It is used to reduce the risk of in-the-breast local recurrence.

2) It is used to reduce the risk of a new primary breast cancer in either breast.

Both of these benefits are specific to the breast, i.e. they are 'local' benefits.

3) It is used to reduce the risk of a distant recurrence, i.e. it is used as a systemic treatment to prevent mets."

Pre-invasive cancer, i.e. DCIS, benefits from #1 and #2.  Invasive breast cancer benefits from all three, the third being a "biggie".  Because DCIS patients benefit from only #1 and #2, then they must weigh the risks against the benefits.  In the case of IDC (which, I believe your diagnosis is--L to the K), then all three (#1, #2 and #3) factors are important, and the benefit far outweighs the risk (of triple negative ca and of the other side effects of Tamoxifen).  In the case of DCIS patients, it's not so easy to answer the question as to whether the risks outweigh the benefits or the benefits outweigh the risks.  At my facility, not all DCIS patients are automatically recommended for hormonals, although most are.  As with all other aspects of DCIS, they just don't know which patients are at greater risk of recurrence, other than those with known genetic mutations. I suppose the Oncotype test would help with that, but it's only used for the possible need for radiation, not for hormonals.  As someone alluded to earlier, it's no wonder there is PTSD for a DCIS diagnosis. Our path to treatment and follow-up is so unclear. At the same time, I don't have to deal with PTSD for mets, because I don't have to worry about that, and that is a really big thing.  Maybe I could have avoided the whole thing with fewer screening mammos (as VR has alluded to). When I went to my first surgeon in June of 2012, and told him about the ADH found on core stereotx bx and the need for re-excision (he had already done three surgeries for me--one for previous ADH/ALH), he said that I'd been doing what I was supposed to do (screening mammos).  I said to him, maybe I shouldn't have, because I was headed for more biopsies, etc.  If I didn't have those mammos, I could be living in bliss right now (or blissful ignorance, depending on how you look at it.)

And one more thing that hasn't been discussed here is that most of the industrial countries like ours have similar breast cancer mortality rates to ours and they do less mammography screening than we do.  Again, I am not referring to diagnostic screening.  I am referring to annual or bi-annual mammography in asymptomatic patients.  The bottom line for me is, as it is for the authors of the study is that we need to appreciate both the benefits and risks associated with mammography and need to consider using a new precise vocabulary that will help us in the long run make better personal treatment decisions.

Voriac-  asymptomatic, someone who is the watch & wait do to low grade or high risk for a recurrence or cancer? I do not like the idea of radiation from mammography, but if it weren't for a mamo in the fall of 2007, I'm not sure I would be here today. After my annual MRI that showed no cancer, six months later, I had a mammo that spotted the idc. It would be nice if our insurance paid for the test that shows cancer or hot spots without radiation. I'm not sure why industrial countries stats are similiar to the U.S. ??? Just know, I'm grateful the U.S. allows us mammo's for those who are at high risk for recurrence.