NY Times article on Dr. Laura Esserman and DCIS
http://www.nytimes.com/2015/09/29/health/a-breast-...
I hope this link works!
At the moment, there are only five comments in the online Times on this article (it'll be in the print version tomorrow, 9/29), but I'm sure there'll be many others.
Comments
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Does anyone know if when they talk about "over treatment" is it always referring to DCIS?
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Below is a comment by one of the New York Times readers (NLS--whom I believe is an MD) about the article. I like it a lot. I have a hard time with some of Dr. Esserman's views. There just isn't enough data in many cases, to say who should forego treatment. I'm sure that she would have said that I didn't need an excisional (surgical) biopsy when my core biopsy showed only ADH (atypia). Then the excisional biopsy showed extensive high grade, multifocal DCIS with comedonecrosis, which she does believe should be treated. So.....this process isn't so easy and predictable as she makes it out to be.
"Is this about improving patient outcomes? Or is it about an OCD, controlling surgeon? Medicine strives to claim it is 'patient-centered' and 'evidence-based' yet I see none of that in this approach. This is not the eclectic approach of a future-thinking genius, this is a doctor making unilateral decisions, based on little evidence, playing with a lethal disease.
Small does not mean less aggressive when it comes to tumors. DCIS often does not exist alone, but frequently pairs with more lethal forms of invasive disease. Until we have evidence to help stratify who we should say 'no' to as a 'low risk', valiant efforts such as this are careless and can result in expensive and more extensive interventions in the future (if we miss the early diagnosis of disease, catch it at a more advanced stage and have to throw multiple modalities at it rather than less intensive, less expensive early intervention) and, in fact, might risk lives.
Challenging the status quo when armed with evidence is noble, however when so many questions remain unanswered about appropriate selection of candidates for observation vs treatment, 'cowboy medicine' such as this has no place putting lives at risk. There may be a day when we can confidently identify low vs high risk DCIS, but this is not yet that day and no surgeon has the clairvoyance to know which patients are most aligned with benign disease." (from the New York Times website 9-28-15, a reader's comments) -
Great article, and I love her approach. When I first had the excision of my "fibroadenoma" and the doctor called to tell me they found "a little bit of cancer" in the lump, I assumed it was DCIS. By the time I met with her I had done enough research to know that I would have just left it alone at that point as long as the margins were clear. I think watching and waiting should be an option for those with low-grade DCIS, and I think surgery only is a valid choice as well. Currently very few doctors will even think of entertaining either option, even though statistics don't back up the practice of always aggressively treating DCIS. Doctors who aggressively treat all cases of DCIS are not using an evidence-based approach.
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The problem I have with her approach is that she doesn’t even recommend excising the DCIS ... so how in the heck can she be sure that is all that is in there? As one of the 10% cited in the article who have invasive cancer found alongside the DCIS (despite it being a tiny amount of intermediate grade DCIS so not particularly high risk) I am glad my surgeon insisted on removing it.
Advocating against radiation and tamoxifen in some cases is one thing, but advocating against removal and complete pathology is a very different thing in my opinion.
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I personally think that doctor is dangerous!
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Maybe there is more information about this doctor elsewhere, but there is nothing in the article that says she never recommends surgery for DCIS, only that evidence shows that we are vastly overtreating it (which is correct).
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It’s not that she NEVER recommends it, but that she doesn’t always and to from my understanding we just can’t tell 100% from imaging what is really going on inside the breast so there is the potential that she could potentially be missing out on invasive cancer. As I said, my DCIS on the surface wouldn’t look all that high risk (intermediate grade and very small) so I could easily be someone that she recommended watch and wait for, but I already had IDC beginning to form, and depending on how fast it grew it could have turned into a life-threatening situation. Yes, with her approach she might not miss too many cases of IDC, but even one may be too many for the woman who has it. I just don’t see where the harm from a lumpectomy outweighs the risk of a more serious condition. As I said, radiation and tamoxifen might not be as necessary as currently prescribed, but until imaging is as good as looking at cells under a microscope for diagnostics, I will continue to disagree with her approach.
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I completely agree with Annette. I had a small cluster of calcifications, which Dr. Esserman would have probably said watch and wait, don't even biopsy. When I had the core biopsy it was found to be atypia only (ADH) and she would have likely said just leave things alone at that point. Then they found the extensive high grade DCIS on the surgical biopsy, which she actually does treat, but if she doesn't biopsy, it won't be found.
I'm all for Dr. Esserman doing clinical trials, and women signing up to be treated first with hormonals, but I just don't believe that the data is there for her to be making preemptive treatment decisions about women who aren't voluntarily participating in clinical trials, without, at least, biopsies to determine the extent of disease.
I'm going to ask my radiation oncologist about Dr. Esserman's perspective when I see her in a few months. The RO is a NCCN (National Comprehensive Cancer Network) panelist who develops the standard of care for DCIS (she works at MSKCC).
I wish the NY Times would sometimes publish articles on DCIS which are more balanced in terms of perspective, and in terms of the breadth of available factual information. Sigh.
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I agree, ballet12. The NYT publishes endless articles on the "overtreatment" of DCIS but never mentions the subtleties of grade, age, margin width, etc. The comments sections are filled with people who are so thankful to hear that DCIS is nothing to worry about or actively treat. However, one commenter in that article told how her mother had been one of Dr. Esserman's patients and the doctor had pooh-poohed her concerns about pain after her MX to treat DCIS. She finally found another doctor who diagnosed her at Stage IV before she passed away. I'm not saying Dr. Esserman could have prevented her death, but her overall approach, or at least the aspects amplified by the media, seems to not take DCIS very seriously. I'm glad there are clinical trials. Regardless of her gut feelings, I need data.
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Well, I have to chime in here. First of all, this piece in the Times doesn't share any new info, and focusses on Esserman's quirks and not her research initiatives. People, especially those who have lost loved ones to breast cancer or have it themselves, have understandably negative reactions to Esserman's views based on their particular set of circumstances. But she is not dangerous or practicing cowboy medicine. If you listen to this podcast, she explains her current trial, which is the kind of data collection that needs to take place in order to develop more appropriate treatments for DCIS. True, we don't have the data to support not treating DCIS across the board. Esserman does not suggest that we do. She's made a career of saying the data that we do have does not support current treatments. And given the heavy price to be paid physically, emotionally, professionally and financially by the millions of women treated for DCIS, why do we continue down this path? The Times writes about her because she is willing to question the status quo.
link to the podcast http://www.healthnewsreview.org/2015/09/dcis-dilem...
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farmerlucy. I read the article and yes it was only talking about DCIS
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thanks dtad
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I have a lot of feelings around this. The idea (not just in this article) that DCIS, and even very early BCs (as mine was; just a tiny, non-aggressive micro) might have always been in women, before the super-screening, might have gone away, or not grown, on their own, is awful to me. I had whole-breast radiation. This can result in spontaneous rib-fracture when one is older, and more importantly, a tripling of lung cancer risk. Well. It's done, now. As is logical, I, and the docs these days, cannot know which would have grown, and which would have remained the same. My question is this. I am torn between wanting BETTER screening (ultrasounds, in addition to mammos, which my HMO will not give me) and NO future screenings, because of all of the above, and because I've had it. I think we are in an "in-between" time; not good for us, at all, but maybe they will know more , soon. Unfortunatly, I will have been in the in-between time. Thank goodness my kids are grown,and life does not hinge on this answer. Not to be morbid, but, truly. In 20 years, they may wonder why we ever did whole-breast radiation. I had to go with the knowledge that was available to me at the time. Still. Not happy about it.
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To add to this, you should understand that I am supposed to get my 2-year-out mammo, and I have a real feeling to not do it. Because, if a tiny DCIS is found, I truly do not know what I would do about it, now.
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I'm sorry, Percy4. I think you're absolutely right, we're currently in an "in-between" time, and it's difficult to know what to do! Like others have said, we can only do what we think is right with the information we currently have. That's part of why I find doctors like Dr. Esserman to be valuable - without research we will continue to treat all cases of DCIS the same. Hopefully, in time, we will know better how to treat individual cases.
Even now I consider myself lucky in that my doctors knew that my case didn't warrant chemo. They couldn't have known that without the research done in the past 20 years or so.
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Good points, NoCalMom. I look forward to the day that the treatment regimen is clear for those diagnosed with DCIS, and hope that a MX will one day be unneeded. I'm a statistician, but some days I am too close to this topic!
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Interesting article. We knew for years that women with BC were being over treated with surgery (radical mastectomies) and chemo and we know we are overtreating DCIS now. Just as they have found less radical surgeries to be successful for BC patients and better ways to screen those who will and will not benefit from chemo, hopefully they will find a safe way to avoid overtreatment of DCIS in the future, but not if no one asks the hard questions, tries out new things. Not sure Dr. Esserman's approach is 100% correct, but she is trying to address an issue which certainly needs to be addressed.
On a personal level, I was told by two different surgeons at two different breast centers, based on imaging (MRI) that I had an area of DCIS surrounding the small IDC in my breast. One went so far as to say it was cribriform type DCIS, which is apparently often found w tubular BC. Final pathology after surgery showed no DCIS. So what happened to it? Did it go away? Was it never there? I'm sort of pissed about all the extra tissue they took to get this phantom DCIS ( I did get really big, clear margins) but I'd be really, really pissed if I'd had surgery for DCIS, sacrificed a big chunk of breast and there was none. I doubt I am the only person this has ever happened to. When I asked did it go away or was it never there, no one gives me a real answer.
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Hi Labelle, until they figure out a way to know for sure who will and who will not progress, I find popularizing wait-and-see approach to be potentially doing a lot of harm. Scanning technologies are getting better but are not there yet to be fully reliable and to catch that evasive moment when pure DCIS becomes invasive..
On a personal level, I was followed up by regular mammos for about 12 years. During those dozen years, always had BIRADS 2 and no further follow up required. Regular mammos were alternated with diagnostic six month cycles. That's 'wait-and-see.' Until on year 13, regular mammo showed a change in calcification pattern. Was sent for biopsy. Scannings including MRI done before surgery showed a tiny tumor and clear lymph nodes. Surgical pathology results are in my profile below. I wish I were sent for biopsy and other tests much sooner than I was.
Speaking of mastectomy, nothing showed on pre-surgery scannings in my left breast that I decided to remove anyway. Surgical pathology showed very extensive LCIS in the left breast as well as in the right that were not observed in any scannings prior to surgery.
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I guess both of our stories show the limitations of our current screening/scanning methods in terms of both false positive and false negative results. As I wrote before, I'm not entirely on board with Dr. Esserman's approach to DCIS but the realization that what we are doing now isn't good enough/accurate enough and new models of treatment (not necessarily hers) are needed is IMO better than just doing what we've been doing, treating all DCIS as if it were IDC or were going to become IDC when we know that isn't what usually happens. Only when questions are asked (like how do we figure whose DCIS will progress and whose will not?) will we start to get any answers. If no one questioned the need for radical mastectomies that is what we'd all be getting today.
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I also think we need to be completely open about the limits of screening. Every woman needs to know it is not fail safe. I had no idea. I did it for 20 years. I was sure it would be caught at stage 0 because I did all the blue ribbon screening - even MRI's like clockwork. I would say that the vast majority of women today would say "I had a mammogram, I'm good." In the same way as breast density is required to be disclosed in many states I think the effectiveness of screenings need to be disclosed too. Ok, stepping down from my soapbox.
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To Percy4 and whether even get a mamo at this point knowing you wouldn't want to treat DCIS if they found it. Would you be willing to take Tamoxafin if DCIS was found in the other breast? Apparently they're getting good results with it at the clinical trial at UCSF. And there are a lot of (not crazy) people who claim DCIS will heal itself with special diet and lifestyle modifications... I personally would like to see a drug developed with fewer side-effects than Tamoxafin for DCIS. That ought to be possible in the not too distant future.
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Thanks, ladies. I may sound crazy, and, again, though with the knowledge I had at the time, I do feel I did the wise thing, I am still undecided about future screenings. What DO I do if a tiny, low-grade DCIS is found in the previously radiated breast? I cannot have rads again, there, and with these new schools of thought, I'm just not sure I would go right to mastectomy, which would, in the treated breast, be my only option. DCIS is now 25% of findings. Good; if it prevents it becoming worse. Bad; if it means severe over-treatment. I cannot know, but have a strong feeling, that, undetected (as in the past) my low-grade DCIS (and even the non-aggressive micro) may never have caused me any harm at all. But the radiation I had certainly can. Really, seriously, considering not getting future screenings. There is no breast cancer in my family, and, in fact, no cancer at all. Everyone has lived to be 100. It would be a big leap to forgo screening, but, really?
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Nocalmom- I don't think I want to take the hormone-blockers. I'm just not willing, with my very low recurrence chance, to have bone and joint pain, and even MORE hot flashes, and, basically, be turned into an old woman. I have a very strong feeling that I will be fine, and always would have been, and I am not a "nutty". I do not want to go through having another mammo, and a tiny DCIS or tiny micro is found, and I end up maimed or whatever. I think I was perhaps mistaken about getting the rads. I just could not get away from the numbers about rads cutting recurrence. My RO was the best and smartest doc I've ever met. Still. It was clear that he was going with the "now", but I could see he did not think the status-quo would last long. Actually, he said so; he just did not know what else to offer right now. Once something is found, they, at this point, HAVE to treat it, and, of course, we feel we have to, as well. I am stumped. Not loving being in the "trial" group.
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Hi all - In the interest of honesty and clarity, I feel I have to say that, even though the articles about DCIS, and maybe even very early invasive cancers (I did have a microinvasion) not progressing, or being gotten rid of by the immune system have concerned me about possible over-treatment, I WILL be getting my mammo. I'm just unhappy that the ability to know which cancers will progress and which will not is just not here, yet. That is REALLY too bad. Still; all in all, I think things in this area are better than they used to be. Just hate all of this!
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percy4,
The fact that there is so much unknown about the progression of DCIS to IDC, is maddening indeed. For individuals, at this point, it really boils down to how risk tolerant you are. Yes, docs do lobby in favor of tx if something is found, but many women themselves make the decision to treat even small amounts of DCIS aggressively. Risktolerance becomes what drives decisions in the absence of any diagnostic or predictive tests.
On another note, although I am 59 and have been on an AI for over 4 years, I do not look or feel like an old woman. Most people are amazed when they find out my age and truly floored when I tell them I'm stage IV. I am active and vital and intend to stay that way as long as I can!
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Thank you, my Dear. Good thoughts, indeed. xx
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Also; it's great for me that you responded, here. I have followed your story, and it is a very encouraging one. Glad to hear you are well and strong!
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I'm with Percy4. My journey started with LCIS. Constant monitoring every 3 months between BS and Onc. 2nd excisional biopsy for another papilloma resulted in DCIS finding which was not noticed on US or Mam. After MRI then another with biopsy, determined too large an area for lumpectormy so mastectomy was the outcome. After reading the article, I too wish that maybe just maybe this surgery was too aggressive a treatment. What if the dcis / lcis could have been managed with Tamoxifen rather than with mastectomy? I have since had hysterectomy and ovaries removed due to 9cm on ovary. If I didnt have the DCIS would they have been ok with just removing the ovary? maybe maybe not. So now, my female parts are few. And I am still taking tamoxifen to keep the LCIS/DCIS from turning up in my remaining breast.
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