DCIS and Possible Overtreatment

Beautifully said 1Athena1....thank you!!!

Zuvart, thanks for the reminder of another article and research which has provided peace of mind for my choices.

Happy to know I am not alone!  

 Donna

alexandria, you asked a very important question:

"I don't know if there is any information as to the number of women with invasive cancer now whose disease started with undetected DCIS. " 

Since it's believed that approx. 80% - 90% of IDC starts as DCIS, wouldn't that mean that 80% - 90% of diagnoses of IDC could have been prevented if the cancer had been caught earlier, while it was still DCIS? Part of the problem, I believe, is that some DCIS converts almost immediately to IDC, so there is little opportunity to catch it.  But when a small amount of DCIS is detected, how do we know if this is one of those cases that would have immediately become IDC or whether this is a case of DCIS that would have remained DCIS for years?  The point is that right now, we don't know - at least not with enough certainty to suggest that DCIS should not be surgically removed. 

athena, I think you've missed what's behind the frustration that you see voiced here by so many of us.... what's behind my "feelings".  I don't get upset when others with DCIS talk about options to minimize treatment, or ask if they can avoid certain treatments.  Every diagnosis is different, we all come to this with different experiences and history, and we all approach our diagnoses differently.  Some women want to take advantage of every treatment that's available to minimize their future risk.  Other women want to minimize the treatment they undergo for this diagnosis of DCIS.  Approaching it one way or the other doesn't invalidate the feelings of anyone who approaches it a different way.

What frustrates and angers me is the irresponsibility of some supposed "experts" in how they talk about DCIS, how they address women's concerns about DCIS, and how they want to handle diagnoses of DCIS. The article posted by zuvart quotes some of those supposed experts. That's what I'm reacting to.

First, let me say again that I fully support doctors who strive to better understand DCIS and who aim to treat each case individually based on the risks of that case and the needs of that woman.  Dr. Lagios is a perfect example of a doctor like this.  Based on his studies of DCIS, he is forceful in saying that today's "standard of care" treatments may be over-treating some women.  But from what I've found, he is careful to not make broad-based statements that simplify DCIS and downplay the concerns of women diagnosed with DCIS.  Over the years I've seen many women from this board go to Dr. Lagios for second opinions.  In some cases, he offers a different point of view than their doctors, and advises that they may be able to do with less treatment (usually meaning no radiation). However I've seen just as many cases where he advises that the diagnosis is too serious and too risky to go against the treatment standards. So as much as he is a proponent for avoiding over-treatment, he doesn't support less treatment in cases where treatment is really necessary. 

To contrast that, let's look at some of the quotes from the article that the OP posted to start this discussion.  

"The prospect of changing terminology and treatment options in DCIS is complicated in the United States by what 2 different experts described as "hysteria" surrounding breast cancer."  Excuse me?  The "hysteria"? This is from the supposed experts who are driving to take the word "carcinoma" out of DCIS. It doesn't show much respect for women diagnosed with DCIS, does it?

"From preliminary results from 23 women (BMC Cancer. 2009;9:285), 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."    Really?  We are talking about a pilot study - a small, preliminary study - and regardless of the findings, Dr. Esserman want to make a change now?  What if the findings don't support her hypothesis and thereby support the change?  Oh, screw it, let's make the change anyway. Really? Does that show concern for women who are diagnosed with DCIS or is that the sign of a doctor who has an agenda and is willing to do whatever is necessary to push that agenda forward?  

"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."   Hmmm... really? Where's the support for those two statements? I'm not a doctor or a medical scientist but I've been reading everything I can find on DCIS for the past 6+ years and what I've read definitely doesn't lead me to those same conclusions.  So is Dr. Esserman selectively picking and choosing her data to support her hypothesis?  And here's another one:

"Less than 5% of DCIS turns out to be "something else," including invasive cancer, said Dr. Esserman."  Every study I've seen suggests that the percent of DCIS that turns out to be invasive cancer upon further investigation is much much higher than that. 

"In the case of DCIS, there is a lack of convincing data that early treatment reduces mortality, Dr. Esserman said."  Absolutely untrue.  The studies I've seen (including the one I linked above) show that early and proper treatment of DCIS does reduce mortality.  The simple fact is that DCIS is 100% survivable.  But if DCIS develops into IDC, either because the DCIS was not removed or through a recurrence, then the patient faces a risk of mets and mortality.  Studies put the long-term survival rate for those initially diagnosed with DCIS at approx. 98% (I've seen one study at 95%). Every one of these deaths occurred because the DCIS was not adequately treated. 

"Dr. Partridge agreed that DCIS is overtreated, but she noted that there is uncertainty about which patients are at highest risk of progressing to invasive breast cancer. "There are ways to risk-stratify, but they aren't great," she said."  Right. So why are changes are being proposed now? 

I agree 100% with the objective of stratifying DCIS and creating different standards of care for low risk cases and high risk cases. I agree that once we are able to do this, moving low risk cases out from under the name "DCIS" makes sense.  However at this point we really can't separate high risk cases of DCIS from low risk cases of DCIS - the experts agree on this - yet they are saying "let's go ahead anyway".  Let's change the treatment standards now and let's change the name of DCIS so that women don't get hysterical when they are diagnosed. 

What frustrates and angers me is not that some women would like to minimize their treatment for DCIS, and seek to ensure that they are not over-treating a low risk condition.  I get that.  I agree with that. What frustrates and angers me is the total disrespect that I see exhibited in the attitudes of some of the supposed experts who want to jump the gun on making changes, thereby endangering the lives of women who are diagnosed with DCIS today. 

Edited for typos only.  

I came perilously close to adopting a "wait and see" approach to my DCIS and declining surgical treatment, an approach one of my radiologists supported. But for this board and, in particular Beesie, I might well have done that.



I am fortunate indeed that my grade 3 HER2+ IDC was discovered after mastectomy. Even then, however, I failed to fully understand the gravity of the diagnosis in part because the DCiS diagnosis has been so downplayed I had a hard time taking any of it seriously.



As one of the "less than 5%" whose life may very well have been saved due to the standard "over treatment" I believe changing the standard in the absence of material advancements in diagnostic and prognostic methodologies is irresponsible.

Zuvart. How would the changes prevent people from being under treated?

MariannaHB...wondering if you are now taking tamoxifen? I had DCIS w/lumpectomy, no radiation but MO is insisting on tamoxifen & I am so DONE with it...way too many side effects and interfering with my ability to take the one anti-depressnat that seems to work for me. Just started doing research on alternatives or not taking it at all, so curious to see what your long-term plan is.