News: DCIS shouldn't be called cancer?

Didn't even have to read the NY article to know it was about insurance. Leave it to the good doctors and the patients to discuss. Muska, I am sorry you fell through the cracks. My thoughts are with you!

Although vr dismisses automatically the letters to the editor, the letter writers make valid points.

 jessica749 wrote:

www.nytimes.com/2013/08/05/opi...

voraciousreader wrote:

Jessica...I am all too aware of the position taken by the radiologists' professional organizations when the issue of over diagnosis and over treatment are discussed. ...

 redsox wrote:

Although vr dismisses automatically the letters to the editor, the letter writers make valid points.

 voraciousreader wrote:

Red...I don't dismiss letters to the editors. In fact, not only do I enjoy them, I thoroughly enjoy reading comments following articles published online. My point is simple. When I read ANYTHING, I want to know who has written it. So, with respect to this issue, I know EXACTLY what most radiologists will often say. So that's why it's important here to note who is saying what in the letter. And BTW, I had already read the NY Times letters before you posted them and expected to find them here as part of the discussion. I appreciate your posting them. They are valid points, but they are points being made by groups who have their own prejudices. You should see some of the letters to the editors in medical journals following the publication of articles pertaining to mammography! Those letters are extremely passionate and persuasive. Likewise, I loved reading Dr. Reynold's book, The Big Squeeze. It was a refreshing, courageous book, written by a radiologist who broke ranks from the lock-step position of the radiologist professional societies. Read the book and see if he makes some valid points as well...

For these discussions to be useful I think we each need to try to keep our minds somewhat open to what others write, at least enough to read what they say or what they link to.  That was the point of my post. 

VR made it clear that she was responding with her own opinions without considering those of others:

1. While the first letter to the editor was written by two radiologists, the second letter was written by a surgeon and a Komen exec.  Reading the letters includes reading the names and affiliations of the authors. In any case, their points were straightforward and valid.
2. VR assumed I had posted the links but jessica749 did.
3. VR tells me that I should read the letters in medical journals.  I am very familiar with the medical literature on this subject. 

My point is that these issues are not simple and that we need to read if we want to be well-informed. 

Red...I try not to use the word "valid" loosely...especially in the context of controversial issues.  When I read letters to the editors or comments following online articles, I prefer to use other words to describe my thoughts about what the writer is discussing.  The radiologists and Komen made, IMHO "good" points.  But other readers on this thread who do not read journal articles or delve deeply into the mammography debate should know that while these people are expressing "good" points, their points are just opinions.  And, as I mentioned, I've read and heard their "good" points of views on a number of occasions.  I welcome their point of views, but I want other readers to know there are other points of view out there that are "good" as well.  "Valid" to me implies as being "correct," or as is used in the court of law as having "legal soundness."  Perhaps a better way of describing their points would be to say that they have a "valid criticism," which leaves open the possibility that there are other "valid" points of view to be made about this highly controversial issue.

Momcat, my earlier post to you was to answer a question you asked.  For some reason you found that offensive.  It certainly was not intended that way.  Given that response, yes, this time I knew that you would be offended by my comments.  But you posted a comment here that seemed to trivialize this issue, an issue that I and many others have spent a lot of time reading about, thinking about and writing about, and that bothered me. Maybe it shouldn't have, but I've devoted an awful lot of time to the DCIS forum over 7+ years; to me this is a serious issue. Perhaps you did not intend your post to come across as trivializing the issue, but then I didn't intend to offend you with my previous post.  It's easy to misinterpret what someone else writes. 

You are right that I have no idea about any diagnosis you have. It is none of my business, but it's also very unusual on this board, since most of us here are completely open about our breast cancer diagnoses & treatments and how the issues we discuss are relevant to us. That was the reason for my questioning (I wasn't judging you; I was asking what the basis was for your comment - that's quite different). If you believe that this is all about insurance, why do you feel that way?  What from your experience or reading of this issue prompts you to say that?  Lots of us have made comments in this thread that have been challenged; this is a contentious issue and that's been the nature of this discussion.  

As someone newly diagnosed with ADH, I think you can offer an interesting perspective to this discussion. The proposal about DCIS suggests that many cases of DCIS shouldn't be identified on screening or biopsied, so this proposal might have an affect on you and the screening and treatments that you get (or don't get) for ADH, both now and in the future. 

We're 6 pages into an interesting, well thought out and sometimes contentious discussion among women who are concerned about how this proposal would affect them or those in the future who face the diagnosis that they had. I hope a meaningful discussion continues. But "(f)or these discussions to be useful I think we each need to try to keep our minds somewhat open to what others write, at least enough to read what they say..." (I hope redsox that I did not put your words in a context different than what you meant.) 

redsox and VR, in reading your exchange, semantics aside, I don't think you are very far apart in what you are saying, which is that there are "good" points or "valid" points on both sides of the argument and that some of these points are being made by experts in the field (as well as well-read laypersons like many here). What makes this issue so complex is that there is strong evidence on both sides of the argument - research studies that can support whichever side you personally land on.  So I think that pretty much anything we read about this - whether by an expert or one of us - is going to be a blend of opinion and evidence.

So I'll quote redsox again and say that I agree completely with the comment "My point is that these issues are not simple and that we need to read if we want to be well-informed."

Edited for typos only.

If DCIS is not malignant then why was my tumor over 7 cc's? It was non-invasive because it was still contained in the duct but for how long? I am certain I saved my life by taking my DCIS diagnosis very seriously. My breasts were peppered with non-invasive cancer cells. How long would they have remained non-invasive? My decision to have a BMX was the correct one and I sleep at night with much peace of mind. Thank goodness my insurance covered it.



Suzanne

thank you for the thought provoking discussion ladies,  my dcis was intemediate but since then i have had alh and adh, my last mammo in feb,the radiologist said i could go to 12 months now,( it was the first one i did not have a follow up biopsy with!) but my ro was no ,you have a mannogram in 6 months. my mo calls dcis pre cancer but still on 6 monthly visits with them,my bs as signed off unless i need anything surgical, but all my paperwork still says i had breast malignancy!                   while some ladies ?gents are overtreated until they are able to identify those that don't need treatment with >90% plus then won't docs stay on the side of caution while treating us .    and if they are looking at cost ,what about the cost of wait and see in mental anguish and the treatment for that

Great point, Colt45! That's what I was as thinking. Would he would wait and watch his wife, daughter?? I wonder!

The solution to the dilemma of painting DCIS with a broad brush is NOT to paint it with a DIFFERENT broad brush of a different color.



If you had a wild animal in your attic and you had

Animal Control come out----and all they did was opine that whatever it is doesn't 'LOOK' that dangerous... without removing it or even positively identifying it------there would be a beating coming to Animal Control.

All of this concern about possibly 'OVERTREATING' when there is no cure and no do-overs if you're wrong to be conservative.....KNOWING that you CAN'T say which DCIS is going to become a deadly problem----is just SO incredibly foolish and irresponsible that I'm speechless.

"Until we are better able to assess which cases of DCIS are low risk vs. high risk, and until we are able to better screen for changes that might indicate progression of a low risk case, we simply aren't ready to make these well-needed changes.  As I've said in some of my other posts, replacing over-treatment for some women with under-treatment for others is not the answer."



I pretty much agree with all of this, Beesie.

This is such interesting stuff to think about.  I think medicine fails us when aggregates and statistics come to represent individuals.  As a person who broke all the rules:  young, healthy, slim, no family history, vegetarian, athletic--I don't find the "false positives" argument very compelling.  I think the medical argument is, early detection is not necessarily key to survival.  A tumor tends to be what it is, aggressive tumors wreak their havoc small, or larger.  It's hard to wrap my brain around, but I understand it better now.  The limitations of mammography, ultrasound and MRI need to be debated more aggressively. My IDC tumor showed up "probably benign" for TWO YEARS before I flagged it. And when I flagged it, they knew right away it was cancer.  The reader error is just much too high, the equipment both too sensitive, and not sensitive enough.  Perhaps at one point, it was DCIS.  Who knows.

Broad brush treatment protocols scare me to death, so does overtreatment.  But therein lies the whole debate.  They just aren't very far on parsing out who is most at risk. 

Ballet - your post rings most true.

Having good MRI results (only the known DCIS) and clear margins after lumpectomy, I am inclined to not 'broil' healthy tissue with radiation.

Not a single physician is supporting me in this decision (although they are kind and gentle to a soul) -- they remind me that the diagnosis is High Grade.

Of course the Nightly News on overtreatment aired 2 days before my lumpectomy!

This is my first negative diagnosis of anything at all.

I am seeking a community of courage to help me stand my ground and deal with the radiation and tamoxifin 'next time'.

Beesie -

Oddly -- I don't have the answers to many of your questions (and I double-checked all my paperwork!). But I do know I am 56 and will have ALL those answers by this time next week.

Gratefully yours,

h2ofront

lane4:  You are so right. I have return of breast ca after 7 years. I am now age 65 ( which is the new 45- right) Well as far as Medicare and other health insurance companies effort to cut costs its kinda funny that this came along when there will be so many baby boomers needing medical help. Lets just wait to diagnose until later and not even call it cancer ( or when its too late) This will sure save a bunch of money and wipe out a generation a little sooner. Mine has spread to collar bone area and one lung but Onc says we do not call it Stage IV anymore...what ?

To put an even finer point on it, regarding tumor characteristics, I remember an article I read that said the whole concept of "early" and "late" is incorrect. Also hard for me to imagine, but the point is that Stage IV may very well have been so from the start, there is no "catching it early".  The way we approach all this is so limited.

Regarding grade, I know that categorization is going to change a lot over the next 10 years.  Not all grade 3 tumors are the same.  I've overshared this story, but the fact my grade 3 at age 39 was a low risk of return via Oncotype broke a lot of the rules.  Both of the women I did treatment with were grade 1 with high risk of return.

We still deal in such global categories with this disease, and it is of course to the great detriment of our health.  Looking back, I have no need to justify my chemo treatment.  It is the choice I made as a very logical and thorough individual, with full knowledge that our tools to treat are extremely limited, and I made the best choice with the information I had.  I never judge others.  What I know is, some of the women who did chemo with me will recur, just like some of the women who didn't will, too.  And THAT is where we need to be focusing our research.