NYT article on DCIS

This really makes me wish I had sent my slides to a few other pathology centers. WIth a 2.4 mm occurance of DCIS that was removed with the biopsy (rendering my lumpectomy worthless), I often wonder if I should have consulted with a few more docs regarding the results.

Interesting article.  Thanks for pointing it out.

I think there are two points on which I am in complete agreement:  1] don't rush to the operating room and 2] get a second opinion.  When you are sitting there in the first days of diagnois, it is hard not to rush to a decision--after all, some one has just told you that you have cancer.  And yet, it is the most important thing.  I am always sad when women join this list and announce that they were diagnoised days earlier and are having surgery on Friday or whatever.  I know the desire to get it over with but with DCIS, I fail to see why the doctors don't tell women that they don't have to rush to a decision.

I would also add that if you live someplace smaller, it is worth whatever cost to find a place that specializes in cancer and a surgeon who specializes in breasts to consult with. 

3monstmama, very well put!  I agree with everything you said.  And to your point "with DCIS, I fail to see why the doctors don't tell women that they don't have to rush to a decision" I will add that I also fail to see why doctors don't explain to women that DCIS is not life-threatening. 

In a post yesterday I commented that I don't think it's appropriate to define DCIS as a pre-cancer because this could lead to the under-treatment of some cases of aggressive DCIS and that could have serious consequences.  But, by the same token, I feel so sad when I see DCIS being over-treated simply because someone doesn't understand the risks associated with their diagnosis. Why are so many of our doctors not explaining that DCIS is not life-threatening?  Why are so many of our doctors not explaining that pure DCIS cannot spread to the nodes or into the body?  Why are so many of our doctors not explaining that DCIS cannot recur in the opposite breast?  Why are so many of our doctors not explaining that DCIS is a concern only in that it has the potential to become a more serious cancer?  I see so many women make treatment decisions without understanding these very important facts about DCIS. 

To me, what it comes down to is that every case of DCIS should be treated appropriately to minimize the risk of a future invasive recurrence.  However what is "appropriate" can vary hugely depending on the diagnosis. For example, my future risk, having had over 7cm of multi-focal, multi-centric grade 3 DCIS with comedonecrosis (ignoring the fact that I already had a microinvasion of IDC) was very different than the risk faced by someone with a single 1cm lower grade tumor. Ultimately, with treatment, both of these diagnoses can be brought down to a similar low risk level, but the types of surgery and/or treatments required in each case differ considerably.  With 7cm+ of aggressive DCIS, I had to have a mastectomy - without it, an invasive recurrence would have almost been a certainty.  On the other hand, someone with a lower grade 1cm tumor can achieve a low recurrence risk by having a lumpectomy and if the margins are wide enough, possibly without even needing radiation and/or Tamoxifen. 

And that gets me back to the NYT article and 3monstmama's post.  Everyone diagnosed with DCIS should get a 2nd opinion on their pathology so that they are certain about their diagnosis, not just whether it is DCIS (how scary that there are so many misdiagnoses) but also to confirm the specifics of the DCIS subtype and grade, which are key factors when considering treatment choices.  A second opinion about treatment options is a good idea too.  All of this takes time, but, if you are diagnosed with DCIS, you have the time!

By the way, I am one of the lucky ones.  I had my slides re-read by a second hospital and they agreed completely with the original pathology report. I also saw two surgeons who agreed on the best treatment plan for me and who each clearly explained what DCIS and a microinvasion really means. I didn't realize how lucky I was until I came to this board and saw how little information so many women get about their diagnoses.    

I'm a bit concerned that the REASON that doc's are not giving us better information is that they are as confused as we are with a DCIS dx..  I did send my pathology out for a second opinion and did get a slightly different result (1st was a local hospital second was Vanderbilt).  When I asked that the pathology be sent out my bs said "why, they (local hospital) didn't make a  mistake".. Although I was a bit shocked I responded "that may be true but we had taught - if you get a dx to always have it double checked"..  Now why should I have to show a bs that there IS a possibility that a different dx could come from a more educated pathologist in this field.  I left that bs, but not before having the second opinon.  I had done some research and knew that a DCIS dx was always something to be questioned.

Then the other thing that really bothers me is the overtreatment agenda..  As Beesie states above there can and will be under treatment but there is also over treatment.. and the way it is most commonly written up by the journalists is the WE (the women with DCIS) are choosing bi-lateral mx - when in fact it is the bs who are recommending it.  Not only was it suggested that I have a bi-lateral mx by my second bs - a local university genetic counselor (after I had a a negative BRCA) also suggested that I have my ovaries removed.. Now of course the ovaries are not working as well as they were when I was in my 20s but they still put out small quantities of estrogen that my body needs to help keep my bones strong and other organs well as I decline with age.  The rush to, as my first bs state " take them both off and be done with it", judgement is being made by the doctors.. So first and foremost, the pathology society as well as researchers must do the research to show (as I believe is happening now) that DCIS is not one disease but then our general practioner's, OB/Gyn, bs and oncologists MUST be re-educated as to what a dx of DCIS means to THIS individual patient..

That's my rant - this is truly an area of concern and it isn't lay women who are making the decision to remove their breasts - it is the medical professionals they are consulting with when they (women) are most vulnerable and frankly frightened!

IMO

Deirdre1, my Doctors were horrified that so many women chose BMX, in fact I think every Dr I consulted felt that way.  In my experience, it's more the women who say, perhaps unnecessarily, "I just want them off." 

When I was dx with bc, I was told not to get on the Internet and follow doctors orders. They wanted to rush me into surgery, suggested a mx and node removal. I did get onto the computer and begin researching. If I knew what I know now, I would  had insisted that the doc leave in the sentinal nodes until after final biopsy. I'm glad I went against their suggested mx.

One year later, second dcis dx, I waited 2 months before surgery. I didn't feel in a rush, knowing my dx wasn't invasive. I felt I had time to think through my choices, re-research and come to peace of mind what I should do. The first time, I felt panic to get the cancer out.

It seems that almost 2 years later that more women are speaking up, researching and working with their doctors.  

Good morning- here's a link to another article I see out there this morning.

 http://www.sacbee.com/2010/07/23/2909711/doctors-encourage-second-opinions.html

"By the way, I know Dr. Lagios is mentioned in that article as he is mentioned in several places on our boards and on the internet. He is indeed a well-known pathologist; however he is also known here in the bay area as a very controversial doctor whom many respected surgeons and pathologists for that matter have doubts about. I was going to use his services until I started asking around and was persuaded not to do so."

Just to expand on this - I never found anyone who questioned his pathology skills (he is a recognized expert in the field) - BUT he is quite outspoken in his opposition to Tamoxifen - I listened to what he had to say and felt it was outside the realm of his expertise...my oncologist has a HUGE problem with him because of this.  However no one on my team questioned his pathology report, and in fact he found a dirty margin that my local hospital did not...

What's his problem with Tamoxifen?  (And I agree about taking a pathologist's opinion of a medical oncology issue with a large grain of salt.)

I've always felt that my diagnosis (same from two pathologists) resulted in unnecessary treatment. I can't prove that, but my inner self says I didn't need to go through it.

Grannydukes -- if you have positive nodes then your cancer is not DCIS; the IS in DCIS stands for "in situ" and means it is contained within the milk ducts.  Cancer that is "contained" can not have migrated to the nodes.  DCIS most commonly can become IDC (invasive breast cancer) which is what I have.  My initial diagnosis was DCIS but when they did a lumpectomy they found the cancer had spread beyond the ducts and, in fact, I did have one positive node.  I agree wholeheartedly with Sweaty that you should get a few opinions on the pathology report(s) on your tissue and get a clear understanding of the kind of cancer you have.

I know that Dr. Lagios has his own fine line in which he determines whether or not someone has DCIS. I believe, and this is just from memory, that it needs to be a certain amount in order for him to actually justify calling it DCIS, as opposed to ADH and if you search out there on the internet, you can see that for many pathologists differentiating the two is a hard call sometimes. I think that may be the "issue" that the docs that I spoke with had problems with because in my particular case with the initial lumpectomy, it seriously took one entire month and 4 path places to make that call between DCIS and ADH in my lesion. I had minimal amounts of DCIS and maybe they feared that getting a 5th opiion with Dr. Lagios might cause more confusion in that he might have come back with an ADH diagnosis. Anyway, like I said, my docs did not bash the guy in anyway but all had a nice way of saying that he is an experienced pathologist that is controversial. Personally, I am glad that the final call was DCIS and not ADH, because when I had my dbl mx, my final path indicated more DCIS....residual from my lumpectomy! Just glad they caught it and made the calls that they did!

P.S. I wish I had sent my results to Dr. Lagios. In hindsight, I rushed into my treatment because I was terrified of having invasive cancer, and wanted to find out my margins. As it turned out, I had a 2.4mm tumor that was removed during my biopsy. The lumpectomy did not have any cancer at all, and it healed terribly. I have a curve to my breast, with a deep, deep scar that pulls my nipple to one side. It's hideous, but I am not willing to go under again to change anything.

has anyone had Dr. Lagios review a diagnosis of IDC?  If so, what was the result?

AnnieBear, you can still have a second opinion on the slides, most hospital and pathology labs keep the tissue so if you would like to do that all you need to do is call the bs that ordered the stereotactic biopsy and he/she can order the tissue slides to be put through any pathology lab you and or he/she advises. I say give them a call and get the second opinion from a hospital that is noted for it work with bc.  DCIS is "pre-invasive" cancer, it is a true cancer in that the cells are mutating but it has stayed put in the ducts and has not permeated anywhere else..  Most educated doc's (educated in the area of DCIS) will tell you it is a true cancer not a pre-cancer however there is some debate at the moment because DCIS is such an early stage they just don't know how to handle it..  There is a continuium but it is still a cancer that needs some sort of treatment.  If you get a second opinion that might help you make decisions like radiation or tamoxifen with a bit more comfort level...  I wish you the best of luck and please let us know how things go.  . I went with Vanderbilt but there are many many others so ...  Best, Deirdre