News: DCIS shouldn't be called cancer?

Well, they do know (according to studies cited by Beesie), that DCIS frequently is her2 positive, whereas IDC is much less frequently Her2 positive, so they don't understand that relationship well. I did read, from Susan Love, MD, that the grade of DCIS, if it progresses to IDC is often the same, but I didn't read any specific studies on this.  Beesie?

Ballet...I've searched the literature... Especially as it relates to mucinous BC.... My mucinous sisters have discussed our DCIS component and most of us, if not all... had DCIS of a different grade from our invasive component. That's why I asked the question to the researcher. And you are correct with respect to many more DCIS tumors are HER 2 positive and IDC tumors are less so.

This one is from 2009:  Genomic Heterogeneity of Breast Tumor Pathogenesis

"Since the initial models of disease progression were published, a number of studies examining levels and patterns of genomic variation in breast carcinomas have supported the hypothesis that low-grade and high-grade tumors represent separate genetic diseases, based largely on observations that the frequency of alterations at chromosome 16q was significantly higher in low-grade tumors.... these studies support a model by which low-grade and high-grade diseases develop along separate genetic pathways, with alterations of chromosome 16q serving as the critical genetic determinant between histological grades.

Molecular characterization of ductal carcinoma in situ (DCIS) lesions further supports a model of two distinct pathways of breast disease development. Higher levels of chromosomal alterations have been detected via CGH in high-grade compared to low-grade DCIS, with loss of 16q found almost exclusively in low-grade lesions....Similar patterns of chromosomal changes in in situ and invasive disease suggest that low-grade and high-grade invasive breast tumors evolve directly from low-grade and high-grade DCIS, respectively"

Beesie...I'm going to follow up with our Sloane researcher and see what she has to say. If you look at our mucinous thread, most of us who had DCIS, including mine, WERE NOT of the same grade as our mucinous component. She also told me that the grading systems were not equivalent. I've always have been curious about why my DCIS was a higher grade than my invasive tumor. I will let everyone know what she says. Stay tuned...

Beesie...shot off an email to the researcher and waiting for a reply.... I realize that there is subjectivity among pathologists and a grade 2 can go either way making direct comparisons difficult. But recalling my discussion with the researcher, she and her colleagues ( one of who's names came popping up last night as I looked for more clues for an answer) seemed to be very dismissive of the traditional grading system that pathologists currently use because of the subjectivity involved. She and her colleagues are trying to make comparisons based more on the biologies of the lesions. So in the future, I think we are going to see fewer journal articles that use the current grading models and more like the ones I was looking at last night that emphasized biological comparisons. In fact, I chuckled when she said if I ever needed lab work done, I should never have it done at the end of the week because by the end of the week pathologists might be a little tired from looking at a week's worth of specimens. Likewise, I recall the DH's endocrinologist admonishing him to NEVER have blood or other specimens taken on a Friday because it might sit for several days before it is examined and the specimen might be degraded by then. The DH and I now only go to the lab on Tuesdays or Wednesdays.





One more thing, Topol mentioned in his book about the need for more specimens to be fresh flash-frozen. When I visited the Sloane lab, the researcher was very proud of her freezers containing fresh flash-frozen specimens. She said that flash-frozen specimens were the best and most important and most expensive. But they are indespensible for the kind of studying that they do and the most reliable type of specimens.



Perhaps her lab's research and those of others that are examining these specimens will yield more clues to how DCIS becomes invasive...

Yesterday was one year surgical anniversay for me. I had  Mammo two weeks ago and all was well. Recently so much has been on the news that may have changed my treatment decisions.  First... at my hospital they recently started the one time dose of radiation directly on the tumor site while they are doing surgery which saves money/trauma/time rather than daily radiation of whole breast/chest/underarm later  with all the SEs. Then came the 'DCIS shouldn't be called cancer ' news that made me fall off my chair. I  heard about that one week after my one year surgical follow up and I sure would like to have discussed this with him. I have my 6 month RO follow up next week  and I want  her opinion. I have MO followup next month and we will talk too.  All this is a year too late for me to make alternative choices but I still want to hear from them.

 I was very fortunate that my DCIS was tiny and the margins were extremely wide and clean beause he took a lot of tissue 'because there was plenty there'. I have lost at least  half a cup size on that side but its all good. Being large breasted I never thought I would be stuffing my bra...lol.   Because of my DCIS classification under  Van Nuys prognostic tables published by NIH: Ductal carcinoma in situ patients with USC/VNPI scores of 4, 5 or 6 can be considered for treatment with excision only ... I fought the Rads but was 'beat up' by friends and family so I gave in. I  pushed for and qualified for the shorter Canadian Rads protocol thankfully but still suffered  bad burns and terrified of the lung/ribs/heart issues that could come.

Tamox started in Jan and I loathe and detest it.  I did not want it due to the SEs  on top of my post menopause SEs and I was already down to 10% change of recurrence after RADs. They use a negative stat to scare you and should use  positive approach that there is a 90% chance of NON recurrence which means the affected breast is better off than the  20% occurrence chance for the other breast which they tell me is the 'norm' for anyone who had not even had BS...the one out of eight scenario.   I was perfectly happy with 90%. Tamox makes me sweat profusely so many times a day/night that I have lost track and I am miserable.  My underarms and clothes stink no matter what I do and its embarrassing and I have never had this problem in my 66 years.

So having said all that this is what I would have done if I had been armed with all this new information: I would have had the surgery  for sure and maybe the one shot RADS dose while in surgery but NOT the  4-8 week Rads  and NOT the Tamox..period paragraph. This is what  I wanted and felt was best for me long before all the latest news came out.

Ballet...The researcher told me the same thing with respect to some aggressive cancers skipping the DCIS phase so rapidly that that's why it isn't sometimes seen with triple negative tumors.  Furthermore, she said the reason why DCIS sometimes accompanies mucinous breast cancer is because the mucinous cancer grows so slowly, there's more time for the DCIS to grow.

Progression from ductal carcinoma in situ to invasive breast cancer: Revisited.

And if everyone isn't confused enough by the word epigenetics..here's another study:

Assessment of DNA methylation status in early stages of breast cancer development.

Actually, grade has been called into question as Oncotype illustrates there are subsets.  I was a grade 3 IDC, doctor told me to expect a high risk of return.  Mine was low.  The two women I went through treatment with were grade 1.  Both of theirs were intermediate and high.

They just don't have a handle on the genetic subtypes yet.

VR, thanks for the latest studies.  I will add them to my bookmarks.  And take a look at my May 21st post in this thread:  Topic: Newbie: Dx Yesterday, Hoping for Friends and Answers   There have been lots of studies that compare the biomarkers in DCIS and IDC in situations where DCIS and IDC are found together, or compare the biology of pure DCIS to DCIS that's found concurrent to IDC.  The problem seems to be that everyone is looking at something else, so we don't have one answer to the question  "what is the relationship between DCIS and concurrent IDC?" (or the question "what drives the development of DCIS to become IDC?") but we have dozens of potential answers.  I think that means we don't know yet.    And that's why I worry when I see blanket proposals such as the one that came out on the 29th from Dr. Esserman et al..  If we don't know what drives DCIS to become IDC, how can we know which DCIS is truly low risk and can be left alone?

We do know that in some cases, IDC is found with no DCIS or only a very tiny amount of DCIS, i.e. the initial DCIS evolves to become IDC almost immediately so that the final tumor ends up being 99% IDC and only 1% (or less) DCIS.  What would happen if that DCIS happened to be spotted on a mammogram, just before it moved on to become IDC?  Based on the latest proposal, I guess it would just be left in the breast and maybe even not biopsied.  That's what I always think about when someone has what appears to be just a tiny amount of DCIS.  It appears non-threatening but what if it turns out to be one of those cases where in few months IDC will start to develop and in another year there's a 1cm IDC tumor surrounding those 3mm of DCIS?  If the 3mm of DCIS is removed when it's first spotted, then nothing like that can happen. 

Laurie08, I hope that my comments haven't made you feel bad.  In this thread we've been talking over- and under-treatment in the context of the biology of DCIS and what makes some cases high risk vs. low risk. But there is a lot more to a treatment decision than just the biology of the cancer. I admit that I feel bad when I see women with seemingly low risk diagnoses of DCIS make a decision to have a BMX without fully understanding the risk level but simply because they are so scared by the diagnosis. I've been hanging around on this board for a long time now and I've seen this happen many times.  But I always try to be careful to look at what's behind the decision...is it more than just fear?  If someone is BRCA positive, if someone has a high risk condition in her other breast, if someone is dealing with a second diagnosis of BC, etc...., those are all reasons that might sway someone to make a very logical decision to have a BMX, even knowing that their current diagnosis is low risk. In your case, having been diagnosed with DCIS in your 30s (which does make you high risk to be diagnosed again), and with the history of your mother having died from breast cancer, I completely understand your decision.  It sounds to me as though you made an educated, well thought out decision based on the very real risks that you face.  The concerns I've voiced in this thread (and others) are not about women who make well thought-out treatment decisions - whatever treatments they may choose - but are about those who are so consumed by fear from a DCIS diagnosis that they make their decisions without first getting the facts. That's the type of situation where I feel there may be over-treatment. I hope that's clearer and I'm sorry if my earlier posts sounded as though I was being judgemental about your decision.

Beesie...I agree that based on the current available info on DCIS physicians should not draw a line in the sand with respect to treatment. I agree we don't know enough to say which lesions will become invasive so choosing the "right" course of treatment is still elusive. However, I think what the panel is saying is that going forward we need to recognize that with better and more imaging, more and more people are going to be to be diagnosed with issues. This is going to mean that many patients are going to be faced with making hard decisions. And making those decisions are made even more difficult as the oncology community debates over and under treatment. Recall how upset one of our sisters was last winter when she was told by three teams of physicians, including Sloan, that she wasn't a candidate for chemo because of her low risk invasive tumor. Now you might say that the info about her tumor was probably more accurate about how it would behave and with DCIS being a different beast, it is harder to choose a treatment because the course of the disease is even less predictable. So with what we presently know about both diseases patients are left with a quandary. How much treatment is enough? Again, no one knows with certainty. But until we know more, we still need this new vocabulary that's developing that is moving away from this catch basin word "cancer." And I think it is good news because future clinical trials will include more specific biological characteristics which should help us make better treatment decisions. Moving away from classifying DCIS and other diseases as "cancer" is a very bold beginning. Finding effective treatments will follow.



This afternoon, I spoke to my neighbor who was diagnosed with DCIS earlier this month. Today she had her surgery. Speaking with her today it appears she feels emotionally better. She read the Times article over the weekend and she said she feels better having read it. However she was disappointed today as the surgeon kept referring to the DCIS as cancer. She said to me that he shouldn't call it cancer because as far as she's concerned, she doesn't have cancer. Keep in mind, while the semantics have changed, the treatment didnt change in the past week. Tomorrow, others will have mammograms and later this week, we'll be welcoming new sisters on this journey. But maybe with this bold announcement, some sisters won't be as frightened as we were when we got the call. And hopefully now they will have more personalized info about their lesion so they can make an even more informed treatment decision than we made.

Thanks, Carol, for speaking to the intangible emotional aspects of a BMX decision and my heart breaks for the pain and suffering that this disease has brought you and your family. In any doctor-patient communication, it's important that dialogue take place with compassion and respect for the fact that any choice about diagnosis or treatment for DCIS is going to be emotionally charged, no matter what. Patient's feelings should not be treated as an inconvenient roadblock to arriving at the "right choice."

Like you, I have a horrible family history. My grandmother had breast cancer recur after having a mastetomy, other family members have also had breast cancer (specifically DCIS) and recurred with IDC, and I saw my "never sick a die in life" father die of cancer in a ten-month time span. My treatment decisions will always be guided utmost by what will enable me to be around long-term to raise my little boy so I don't view BMX, in my case, as overtreatment. 

The panel's watchful waiting recommendations come across to me as fairly dismissive of patient choice, especially by failing to acknowledge the very real risks of following such an approach. As someone who had surgery several years ago (before my recent diagnosis with DCIS) for a benign intraductal papilloma at UCSF, I did not get the impression at that time that anyone there advocated watchful waiting for papillomas. Granted Dr. Esserman was not my surgeon, but it still leaves me curious why they would excise one form of breast lesion that is associated with a risk of concurrent invasive cancer and not the other. But maybe papillomas would also now be lumped together with DCIS as "idle" breast abnormalities that can be tracked accordingly. 

Deb, I feel certain that there are women with stories similar to ours, who would feel the diagnosis differently and be comfortable with watchful waiting. But to standardize watchful waiting as the standard of care following a lower-risk diagnosis would seem to deny that for some, the emotional pain of the diagnosis poses health risks in its own right. I hope that the treatment options remain as individual as our very diverse psychological needs require.

I cannot imagine being an oncologist and having to wade through emotional waters with any patient. The recommendation that is the topic of this thread cannot be making their job any easier, even if it is the right answer for many women.

Carol

Hindsfeet, I don't think I would be able to pull up any research that specifically says this, but my gut feeling from everything I've read about DCIS is that all grade 3 DCIS eventually will develop an invasive component.

VR, I honestly believe that renaming DCIS without first separating out high risk DCIS (and keeping it designated as being "cancer") will lead to more women dying.  Off the top of my head I can think of a number of situations where women came to this board after a needle biopsy showed grade 3 DCIS, yet having read all the hype about how DCIS isn't cancer (this discussion has been going on for years), they were bound and determined to not have surgery.  In the end, some left the board and perhaps never did have surgery. Of those who stayed and ultimately decided to have the DCIS removed, several were found to have invasive cancer along with the DCIS, and in some cases, it was HER2+ invasive cancer.  So these women went from "no surgery because it's just DCIS and it's a pre-cancer" to a diagnosis of a highly aggressive invasive cancer, requiring chemo and Herceptin. If DCIS was designated as being an "IDLE" condition, I think that some of these women would never have agreed to surgery.  And I am certain that other women would join their ranks.

One of my big frustrations with this discussion over the years has been that it seems to resonate with the wrong people.  I've spent hours digging through research and writing posts trying to explain to women why surgery is necessary or why they should consider rads after their surgery because their DCIS is aggressive and is very likely to develop into invasive cancer (or may already include an invasive component that won't be found until surgery) or recur as invasive cancer.  And I've spent hours digging through research and writing posts trying to explain to other women why a 3mm grade 1 DCIS doesn't necessitate a BMX (to the discussion above, assuming no other significant risk factors or personal factors) or why maybe rads isn't necessary if all the margins are good (or my personal favorite, why Tamoxifen is not needed after a BMX for pure DCIS if the surgical margins are good).  The message that DCIS isn't cancer will resonate strongly with that first group, the ones who need to treat their DCIS aggressively but who resist even today when DCIS is called "cancer", but it won't resonate at all with that second group, who will want to throw everything at the condition whether it's DCIS or IDLE.

That's why I think that renaming DCIS - without first understanding the specific biological characteristics that will help us define future treatment guidelines for high risk vs. low risk DCIS - is both dangerous and misses the point. It's a bandaid solution.  What we need to do instead is better communicate about DCIS and the fact that it is a heterogeneous disease, with some diagnoses that are high risk and need all the big guns and others that are low risk and can be treated less aggressively.  Meanwhile, the research will continue so that eventually we can better identify which cases of DCIS can be reclassifed as IDLE conditions. Doing it now is putting the cart before the horse.