8/20/2015 NY Times article on surgery for DCIS

Larkspur · August 2015

http://www.nytimes.com/2015/08/21/health/breast-ca...

By Gina Kolata. I apologize if someone has already shared this article here.

ksusan · August 2015

Here's the data interpretation section of the JAMA article Colata is discussing. I've highlighted a couple of points:

Interpretation

There are several similarities between the clinical course of women with DCIS and that of women with small invasive cancers. For both, tumor size and tumor grade are significant predictors of mortality.²² For both, women with ER-positive cancers initially have a lower annual hazard for death and then the relationship between ER status and annual mortality reverses.²³ For both DCIS and invasive cancer, women who received a diagnosis before age 40 years have relatively poor survival²⁴^,25 and black women do less well than white women.⁹ For both DCIS and stage 1 cancer, mortality increases after an invasive in-breast recurrence.⁴ However, although it is accepted that, for women with invasive breast cancer, prevention of in-breast recurrence does not prevent death,²⁶ this has not been widely accepted for women with DCIS. Also, for women with invasive cancers it is accepted that, in terms of survival, lumpectomy is equivalent to mastectomy,²⁷ even though patients who undergo mastectomy experience fewer local recurrences. For women with invasive cancer, radiotherapy is given to prevent in-breast recurrence, but the effect of radiotherapy on mortality is acknowledged to be small.²⁶ In the SEER database, these relationships between local recurrence and mortality hold equally well for patients with DCIS. These observations have been reported in other studies as well.⁷^,10^,28 It is often stated that DCIS is a preinvasive neoplastic lesion that is not lethal in itself.¹¹^,29^,30 The results of the present study suggest that this interpretation should be revisited. Cases of DCIS have more in common with small invasive cancers than previously thought. The current clinical paradigm focuses on risk factors for progression from DCIS to local (invasive) recurrence, and to study the impact of various prognostic factors or to compare treatments, invasive recurrence is the primary clinical end point.³¹^,32 For example, in the general population of patients with breast cancer, Oncotype DX is used to identify patients who are at low risk for death from breast cancer and who might not benefit from chemotherapy, but in the DCIS population, it is proposed that the test be used to identify patients who are at high risk for invasive recurrence (and not for death).³²It is likely that the current paradigm was adopted because invasive recurrences after a diagnosis of DCIS are much more common than breast cancer deaths and are therefore amenable to study. Fewer than 1% of the patients in this 20-year study died of breast cancer (although the proportion is higher for young women and for black women).

april485 · August 2015

Thanks for posting this study and article. This subject is discussed every year it seems. In terms of whether I over treated my DCIS, I did the best with the data I had. I did my due diligence, read articles, studies, got a second opinion and did what I felt best. This is a topic that should be studied long term but they have hardly anyone who doesn't treat so there is no control group. I guess we may not know for a long time whether we were over treated until they figure it out.

CAMommy · August 2015

Interesting article. I feel pure DCIS is over treated, but with my family history I wasn't going to watch and wait. However the reason I didn't do a bmx was there is no proof it saves lives. Seeing this that there is no proof that lump plus rads saves lives makes me wonder.... But in the end I'm glad I had treatment. My DCIS was more wide spread and of a higher grade than mammo and biopsy predicted. Im glad it's gone.

MizMimi · August 2015

This is definitely something I am going to discuss with my doctor. I may go back to my original "crazy" plan of double MX... Especially since my sister is now getting diagnosed with breast cancer. That makes 4 of us... Grandma, mom, me and sis.

YJ2012 · August 2015

Thanks Larkspur for the link.

I just picked up following article from Time magazine. Which indicates "Some cases of DCIS have an inherent potential for distant metastatic spread." ???.. I thought DCIS by itself can never spread unless there is a invasive competent involved?

http://time.com/4004767/dcis-breast-cancer-treatment/

CAMommy · August 2015

I think when DCIS spreads metastasicly without first being IDC it was most likely misdiagnosed to begin with. When they check the tissue for pathology they do not test or examine 100% of it. It's possible for IDC to be in the tissue and missed but that chance is small. Out of the 108,000 women they followed with DCIS, 517 died from breast cancer without first developing invasive cancer. That is a very small amount.

Also interesting is the risk of dying from breast cancer after a mastectomy was higher than after a lumpectomy. Of course we don't know why, there could be many reasons for this, not just the mastectomy, it could be people who get mastectomies often have higher grade and more widespreade DCIS for example.

Clearly more studies need to be done to ferret all this out.

http://www.sciencedaily.com/releases/2015/08/150820125721.htm

muska · August 2015

I think all IDCs probably start from DCIS. The problem is, there is no reliable way to distinguish between DCIS that will never develop into an IDC and DCIS that will.

Moderators · August 2015

Hi All,

Here is a summary from Breastcancer.org regarding the study:

http://www.breastcancer.org/research-news/how-many-women-die-after-dcis-dx

Please share your thoughts!

longislandmom · August 2015

For me, this article raises more questions than it answers. Given the absence of a random "control" group in the study of women with DCIS who received no treatment and their long-term outcome, i'm not sure what the point of the study is. In essence -- it is re-affirming that the 20 year mortality rate of women who opt for mastectomy vs. lumpectomy is the same (this is not new information -- my BS gave me those stats 3 years ago when i was diagnosed). As to the fact that the mortality from BS is similar to women in general population -- to me, that speaks more about the efficacy of the treatment for DCIS than its uselessness-- maybe i'm missing something? i don't know how one accounts for misdiagnosed DCIS, bad pathology, mediocre surgeons here either...i.e. it's purely a statistical recounting vs. an exploration. on a related note... .i am deeply troubled by the doctor quoted re; no treatment option who seems to be endorsing it, but adding... "it's not for the faint of heart". Neither is Russian roulette! I think this article overstates the significance of this study in terms of adding to an important and needed dialogue on the understanding, staging/classification of DCIS. again, without a statistically meaningful sample of women with DCIS who have thrived for 20 years with NO treatment...this study hardly seems groundbreaking or definitive.

ksusan · August 2015

I was angered by Kolata's comment about whether women should even be told. Yeah, Gina, it's my body. In fact, if anyone had told me I had "normal" calcification the year before, I'd have learned about it and done some things I'm doing now, like decreasing my food exposure to plastics at home. Might not have helped, but it wouldn't have hurt and I would have had a biopsy earlier following this year's change to ambiguous calcification.

Annette47 · August 2015

I can kind of see the argument that maybe more people are getting rads than are really necessary, but without at least a lumpectomy how can they be sure that all they are dealing with is DCIS? If they had looked at my calcifications, said “oh, it’s just a teeny area of DCIS and you’re over 40 and white (I was 45) so we can just leave it alone they would have missed the even teenier micro invasion setting up shop next door.

I also agree that I’m not sure what all this proves since there was no control group that was definitively diagnosed with DCIS and didn’t receive any treatment.

april485 · August 2015

I agree Annette47. Not sure what this article proves at all. So many people have been upgraded to either a micro-invasion and/or a small IDC hiding amid the DCIS found (some 20-30% I have read) that it seems insane to not even tell the patient they have what appears to be a DCIS. WTF? I smell a lot of lawsuits coming from that approach for sure. It is our body and we should be told about any threat to it, not matter how it is viewed. DCIS IS CANCER for Pete's sake. It just has not morphed that last little step allowing it to break through the duct. Ugh...and the argument rages on. Devil

Annette47 · August 2015

The other thing that has occurred to me with stories like this is that perhaps if I had waited on treatment, and the micro-invasion grew to a more significantly sized tumor over the next year until my mammogram (or became palpable in that time), the odds are quite likely that I would still have survived that - that it would still have been caught “early”. But what about quality of life? I had lumpectomy and radiation, which wasn’t pleasant but I was able to avoid chemo - which might not have been true if the tumor had progressed.

Statistically, looking only at survival data, there might not have been much difference between the outcomes of my having treatment when I did, or waiting until it was clearly no longer “just” DCIS, but in terms of what it might have taken to get to those outcomes, I absolutely see a difference. I just feel like studies that look only at survival rates are missing out on other metrics that may be important to the patient.

ChicagoReader · August 2015

Annette47: Absolutely! The article points out that having rads following a lumpectomy for DCIS doesn't increase survival rates, but it does reduce the risk of a recurrence. That isn't news, by the way -- other studies have noted the same thing.

And it was very important to me in deciding to have rads. I don't want to have more surgery if I can avoid it. Besides, 50% of the time, a recurrence in DCIS patients is invasive, so reducing the risk of recurrence also means reducing the risk of chemo and other more serious consequences. These things matter, too.

tgtg · August 2015

I agree with the insightful criticisms of longislandmom above, and share her skepticism about the value of this report. I also have a criticism of my own to add: this kind of retrospective, historical research is only as valuable as the data coverage it includes, and this report covers data from the early '90's through 2010. It is wise to remember that the early '90's were still, relatively speaking, the "dark ages" of diagnostic and treatment protocols. The study also covers a period when most imaging was recorded on film, before digital 2-D mammography was widely used, and the study ends long before 3-D mammography became available (much less standard-of-care) at most imaging facilities.

From the standpoint of academic research, my husband and I (both retired university professors) consider such retrospective studies as "cheap research," quite literally. Especially in these times of reduced funding for research, this type of historical research comes without the hefty price tag of lengthy experimental studies and randomized clinical trials, without the need for labs and equipment, personnel to do the work and analyze the findings, to say nothing of the grant-writing needed to wring a small grant from the government (lots of luck) or a corporate source like a pharmaceutical company. For this type of historical research, the "data" are conveniently found in and retrieved from computer files. In academia, this type of retrospective study is a quick way to grind out another publication to fulfill the "publish or perish" requirement for retention and promotion.

From the point of view of the news media, such an announcement is also part of the business of media--it is just another "story of the day" (or week or month) that sells copy! Even though the NYTimes is my news read of choice, I was annoyed to see this announcement appear online as a "news alert." Even the venerable NYTimes is subject to the need to satisfy the requirements of the bottom line and of investors!

As far as I'm concerned, this report does not add substantive information to the body of knowledge about DCIS or about breast cancer in general, and is making lots of women treated after 2010 question the wisdom of their medical team and the quality of the care they received in he past five years.

Loral · August 2015

I had a benign cyst that the doctors were watching for 2 years, fast forward 6 years later a DCIS and IDC diagnosis, so who knows. I would say if they find a cyst have it biopsied, I wish they would have suggested that for me back then.

BarredOwl · August 2015

I appreciate the NYT alerting me to the recent JAMA Oncology report and commentary. I also agree with the comments above about the limitations of a retrospective study, covering many years with evolving diagnostic and treatment standards, and relying upon a database (with some inherent limits on accuracy and completeness). I guess the study could be considered "hypothesis generating", and it may well lead to the design new prospective, well-controlled clinical trials.

The Times article kindly included links to the original report and to the commentary by Drs. Esserman and Yau (full text, figures, and supplemental data available for free, thank you JAMA Oncology!), and these are well worth reading. KSusan posted a link above to the article along with her quote, but for convenience, I provide them both here:

http://oncology.jamanetwork.com/article.aspx?artic...

The commentary provides some possible areas of investigation. I am glad researchers are questioning things, as this is the kind of discussion that led to improved, more limited mastectomy techniques, lumpectomies, sentinel node biopsy, new radiation and chemotherapy regimens, and the like. As the commentary states at the end:

"Questions remain—but there is room to innovate. If we want the future to be better for women with DCIS, we have to be committed to testing new approaches to care."

BarredOwl

ballet12 · August 2015

Now that we've already made our treatment decisions (or most of us have), the one thing I wonder about is follow-up. If the risk of dying of breast cancer is so low, should we really have intensive follow-up. I am actually only followed yearly for mammography, and actually at my request, sonography. I don't have annual MRI's. This is the decision of my treating physicians at my NCI cancer treatment center. I believe that many of you are on 6 month follow-ups (alternating MRI/mammo). I am currently on a 6 month follow-up for faint microcalcifications in the lumpectomy bed area (BIRADS-3). I really don't want to do more biopsies in that area (or anywhere, for that matter) unless the scan findings are really compelling. I've already had 6 surgeries on that breast. If I were to get a DCIS or small IDC recurrence, my only recourse on that breast is mastectomy (as I did have radiation). I, almost, really don't want to have even yearly surveillance--which has the potential to lead to false positives and biopsies. I "estimated" my recurrence risk from the MSKCC nomogram, and it was 12 percent risk of recurrence in 10 years, of which 6 percent is a risk of IDC. This is a very low risk, as far as I am concerned. According to the "average" risks from the JAMA study, my risk of recurrence ((ipsilateral or contralateral) could even be much lower. As I am approaching social security age, the chances are that I have other health risks of greater significance.

I don't regret having the treatment I did have. My core biopsy only showed atypia, and the lumpectomies (3 of them) showed high grade multifocal DCIS with comedonecrosis, and I don't know exactly how much, but somewhere between 4 and 6 cm. of it. So, the "watch and wait" proposed by people like Dr. Esserman, would have missed the DCIS altogether. I wish we could, routinely, have some kinds of genetic testing on the path samples to know if our pathology is truly at higher risk of recurrence. I was told I wouldn't need to do Oncotype testing as the DCIS was already deemed high grade--so radiation was a given. I felt the radiation was necessary based on that information, so I have no regrets with that. I decided not to do aromatase inhibitors or Tamoxifen, due to potential side effects, and I also didn't feel the need to reduce the risk further.

Any thoughts about follow-up surveillance.

RosieMjdtrt · August 2015

initially I had 3 areas of DCIS. After lumpectomy, an 8mm invasive tumor was found. They said they got it all and recommended 7 weeks of rads. I decided a BMX was a better choice. After my BMX, they found two more areas of DCIS. Even though the lumpectomy with rads would most likely have been fine, the BMX was a better option with regards to my peace of mind. Avoiding the stress after yearly mammos was worth it enough for me.

Annette47 · August 2015

Ballet12 - you raise an interesting point about follow-up. I just “graduated” to yearly mammograms, although my next one will be 6 months from the last because the last one was unilateral only. Other than that, I do follow up with the MO every 6 months, but that is for the Tamoxifen. The surgeon will switch to yearly with the mammograms. My RO has been 6 months up until now, but I don’t know what will happen after my next appointment in October.

The way I look at it is, the mammograms are now going back to the same schedule as anyone else, it’s just that the manual exam will now be done by an expert who will also look over the mammogram as a second pair of eyes to the radiologists. Same tests as anyone else, just done by a specialist.

The other appointments are not as much about the cancer (although they all do breast exams) as much as about any side-effects from the treatment, which has nothing to do with future risk, so after thinking about it (which I hadn’t until your post) I feel like it is a reasonable schedule even if my risk is actually not all that high.

Ringelle · August 2015

Just my 2 cents: Sometimes I feel exhausted reading all the banter about treating/not treating DCIS. I've had 3 surgeries this summer culminating with a box last week. This all started from a few flecks of microcalcifications on a mammogram. My pre surgery MRI revealed another suspicious area that several radiologists and surgeons said were probably nothing. At one point I fed into the hype about active surveillance and was angry that NONE of my DRs would agree to it. Not even my holistically minded primary physician. Pre LX, BS believed biopsy probably got most or all the DCIS and this would be a slam dunk case. Lx 1 and 2 were epic fails even with an aggressive amount of tissue removed. How was I supposed to actively watch something that wasn't being "seen". For that reason and others I had no piece of mind until everything possible was removed. I want to do everything possible to reduce the chances of having to go through this process (or more) again! Perhaps some might be over treatment but some of that has been my choice too. I'm grateful this was "just" pure DCIS but I also hate that I'm stuck in limbo because the science world can't figure out if they really want to call it or treat it as cancer. I'm grateful that I may not have to do rads or tamoxifen. I'm grateful that I won't have to go through chemo. Like one of you pointed out - I never felt like my life was threatened - the possibility always loomed until the final diagnosis with the final surgery came. However, if we hadn't caught this early or if I "watched and waited" or if I have a recurrence or new occurrence, I'd likely have to go through a similar process or worse again. Even if that wasn't life threatening - it sure would be quality of life and sanity threatening! I stand firm on my decision and my treatment! I'd rather give up my breasts and sleep at night!

glennie19 · August 2015

Well-said, Ringelle! How can they "watch" something that can't be seen on imaging?? My Paget's and DCIS were not seen on any imaging either. Can't very well "watch" that, can we?

kayfry · August 2015

I agree that the NYT article was more confusing than illuminating, and I'm glad to find clearer thinking right here; the link to the response from Dr. Love was also helpful. It does seem clear that there are two kinds of DCIS, but the problem we have now is that there's no way to know which kind we have, or had. The odds are certainly on the side of those of us with a DCIS diagnosis, but there are so many unknowns. The only way I can make sense of those relatively few cases of DCIS that result in mets and eventual death is that the DCIS diagnosis was wrong in the first place, that there was invasive cancer that was missed.

From the time of my own DCIS Dx, I had trouble reconciling the information that DCIS is by definition confined to the duct and can't escape it, and that, nevertheless, it must be treated as if it had already left the duct to prevent that very thing from happening. That said, I don't question the treatment I got—the standard Lx and rads. With a higher-grade DCIS and all the confusion over just if and how and how often that might morph into invasive cancer, I still feel I did the right thing based on the available evidence. But as this confusing study reports, it may turn out that it never morphs that way; they just don't know at this point. Also, being ER and PR-, I was spared the decision to do hormonal therapy after surgery and rads. I guess I should worry that being ER- is a bad thing, but honestly, I didn't want tamoxifen or any hormonal therapy and was glad it wasn't indicated, as I think the side effects, for me, would not be worth it. I had clear margins and knowing there is a small chance I could get a recurrence that won't kill me, and an even tinier chance that I could get a new cancer or recurrence that might, is just something I'll live with. But I hope not to dwell on it, given all the other risks that go with living and getting a year older every year.

As for follow-up, I just had my 6-month 3-D mammogram and follow-up with BS, and everything looked good. In November I'll be up for bilateral mammo, since that will be a year since my last one that resulted in my Dx last November. I'll have follow-up with the RO nurse practitioner that same day. BS wanted me to follow-up with his nurse practitioner after that mammogram, but I may only do that if anything turns up, since seeing his nurse practitioner would require a much longer drive to Johns Hopkins main facility, and if anything questionable appears on the mammo, I'd wind up seeing my BS about it anyway. I believe that if everything goes well with these follow-ups, I'll be cleared to return to a normal annual mammogram schedule, no different from what it would be if I'd never had DCIS at all. As far as I've been led to believe, I'll have no regular follow-up with my BS or RO unless a problem crops up, and I never did have an MO. Or maybe I'll have annual follow-up with my BS, which would be okay. But I'd like to think I won't live the rest of my life looking over my shoulder and waiting for the other shoe to drop!

noni458 · August 2015

Ringelle,

Thank you for your post. My daughter is facing this decision in the next few weeks & your feelings about your choice echo the way we feel. With grade 3, comedo necrosis, ER & PR +, an 8x5x2 cm lesion removed with double margins coming back positive for DCIS, she & her father & I just want it all gone. Is that overkill? Maybe... & we will of course wait until the meeting with her oncologist to hear what he has to say. But when you're 36 & have two preschool age children & you've seen several friends & family members die from not being aggressive in their treatment options with different kinds of cancer (because of listening to the wrong study or doctor) ... peace of mind is worth more than any breast, especially since the scientific community apparently isn't sure about the correct protocol for this form of cancer anyway. That's my take on this from the comparatively limited research I've done on this since we began this scare just 2 short weeks ago...what a whirlwind of emotions!

I wish you a speedy recovery & a completely cancer free future, & thank you again for your post.

glennie19 · August 2015

I don't think it is overkill with Grade 3.

calidancer · August 2015

"Less than 1% of patients in this 20-year study died of breast cancer (compared with 5% of patients who died of other causes). Using the Kaplan-Meier method, the breast cancer–specific mortality rate is 3.3% at 20 years, not dissimilar to the statistic that the American Cancer Society5 says is the chance that the average woman will die of breast cancer."

Could someone jump in and explain the difference between the 1% and 3.3%? I'm not good at math.

sandcastle · August 2015

The Grade is very important.....I also do not think this is OverKill.....Liz

calidancer · August 2015

Implication is that HER2 should be tested? That is definitely not standard.

LAstar · August 2015

I think this is a useful study if only to verify that DCIS has to be treated seriously and that better diagnostic and monitoring tools are needed. A retrospective study of 108K women is nothing to sneeze at. I don't want to be randomized to a watch-and-wait control group only to find that more aggressive treatment is warranted.

ballet12 · August 2015

I am sure that those who aren't affected by this diagnosis will largely think that DCIS should be addressed through "watch and wait" even though the study results are based on those who were treated.

8/20/2015 NY Times article on surgery for DCIS

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