News: DCIS shouldn't be called cancer?

Jessica....while Norton says we are not there yet...he concedes that we need better communication and he had to explain in greater detail why DCIS was not a cancer but nonetheless requires treatment. Wouldn't a better vocabulary help?

I agree with what you say, Beesie. I think, VR, and I think you actually agree, that while perhaps better vocabulary is needed - perhaps - most of all it is better COMMUNICATION between doctors and patients, explaining what pre invasive cancer means, because no matter what the name, or renaming is,  doctors are going to, must,  explain it.  More so than more vocabulary words describing varioius conditions, doctors need to improve their communication about what we already do know and have words for.  And when they do explain it, the word "cancer"  will come up-at the beginning, middle or end, the patient will freak a bit. There's no way around it. Breast cancer is a scary thing. EVen if you don't yet have it, even if you're just being told you might have a precursor to it.  I think even your tag line indicates that while your bc wasn't a bad prognosis, you were still quite freaked. Who isn't ? 

I think that Dr. Esserman is trying to reduce morbidity, that is, potential complications, both physical and psychological of overscreening, overdiagnosis, and overtreatment.  The problem is that the cat is out of the bag.  They didn't do these screenings or have the technology at this level, 30 years ago.  If we just do less screening, without becoming more individualized, we are just going back 30 years.  So, yes fewer women will be identified and more will potentially die.  I completely agree with red sox and jessica that the patients are entitled to make their own decisions and take their own risks, as well as get all of the facts and make decisions based on those facts, in combination with their own very personal health/family histories and emotional needs. 

Interestingly, while the technology has improved, the "patient-centered" care has not always stayed in tandem with it.  A good example is the change, which occurred somewhere around 10 years ago (or more), when they began to discriminate between "screening mammos" and "diagnostic mammos" in the sense that they do screening mammos on one day and call the patient back if there are problems.  Back in the day, they would often do the screening mammos and move onto magnifications on the same day (and sonos if required.), or they would give the patients the results on the spot. At some point in the history of the mammo center I went to, they began the separate tracking system.  I would go to schedule the screening mammo and the schedulers would give me the "third degree" if I wanted to get the same day screening and results.  I, finally, realized how to get around this by making the referring physician list history of "severe ADH AND ALH", which was true and which seemed to work, or I would say that I have a lump of concern (which I always had), and they would do it.  The separation of the screening from the follow-up causes women an unbelievable amount of worry and anxiety.  It's much more efficient for the facilities, but it makes women crazy.

Hi VR--Years ago, before she was well-known, I went to Susan Love, MD in her humble office in Massachusetts, for a breast lump.  While I was her patient, over a several year period, she opened a womens health center at a local hospital.  They even did breast exams on the day that the patients were scheduled for the imaging.  It was one stop shopping and very reassuring (at least if the results were good). So, this was one of the first of those womens' breast centers.  The hospital in LI where I went for mammos for years, was very personal about the process, as well.  You had the mammo and magnifications, and you even spoke with the radiologist who showed you the films (prior to digital).  There was some stability in the radiologists who worked there, and you could even schedule your mammo on a day that a certain MD was there.  After cost-cutting and efficiency changes, they still kept the radiologists present at all times (it's a large teaching hospital), but most patients got screening mammos, with results relayed by the techs or a call back several days later.  To get in for the diagnostic mammos, you had to meet certain criteria.  If you met those criteria you still didn't see the radiologist, but you got the magnifications on the same day and the results that day.  The last time I was there, the radiologist actually did come in to say that a biopsy would be necessary. I was very glad that I had insisted on a diagnostic mammo (by stating the ADH and ALH history).  My current institition has a women's clinic (and very very advanced mammo machines), and now with my diagnosis (whatever you might call it these days), allows me to go straight to diagnostic mammo, and I even had a recent biopsy of the other breast (probably would have been called overscreening/diagnosis by Dr. Esserman).  I agree that if women have the opportunity, they should go to a women's breast center.  They are not necessarily located everywhere.

http://www.thestar.com/life/health_wellness/2009/09/25/milk_duct_tumours_not_really_cancer.html

Carcinoma = cancer.



Why DCIS?...why not DPCIS?



Because it is cancer.

Beesie -- You brought up the aspect that bothers me the most about this article which is that it actually  suggests reducing the amount of biopsies, and doctors making the call.  Well, my surgeon thought one area was fine and the other was iffy & possible DCIS, and it turned out both were IDC. I also had extensive areas of DCIS with one being 3.6cm that didn't show up on mammogram or ultrasound.  I know that our personal experiences influence our decisions, but my two IDC areas were only stage 1, grade 3.....thankfully, a petscan revealed 7-10 lesions with the largest being 5.6 cm on my liver.  Watching & waiting& relying on technology and humans that aren't always 100% accurate is a very worrisome proposition to me.  At least, mine was caught at a time, even though stage 4, that we were able to get me into NED right now.  I'm well aware that it might not last longer than the 3 months I've already had, but I'm choosing how to live and enjoy this time.  Would watching and waiting have changed that? I don't know, but I imagine it is likely that it could have been in more organs, etc.  I'm 3rd generation with bc with no proven genetic component, and I'm thankful that my mom was allowed to make the best decisions for her based on family history, etc. even though hers was officially stage 0 at the time of her dx.  The emotional and mental part of the treatment can't be understood by others, and each patient needs to have the ability to choose what is best for their own emotional health, just as much as physical.    I hope this makes sense!

Hi everyone,

New to the site and found this thread immediately and would appreciate your input.

After calcifications of some sort were evident on my right breast, I had a cone biopsy done last week. Here's where it gets me completely baffled. I was told I have "DIN 1 and DIN 2". The doctor recommended surgery (lumpectomy).  My own family doctor looked at me and said she had never heard of it. (!?) I am familiar with DCIS as my mom had it some years back. Is this the same thing with a different name?? 

Many thanks,

Colette

Colettekathryn,



DCIS but if they changed the name a few yrs ago...why do we still call it DCIS??

http://theoncologist.alphamedpress.org/content/14/3/201.full

Nbnotes...I am sorry to hear about your diagnosis. I am glad to hear you are doing well now. Curious if you could tell us more about how you were diagnosed. Were you symptomatic and had a diagnostic mammogram or was it found during your annual mammogram? The reason why I ask is that the mammography debate centers on the idea that since annual mammogram screening began, there is a chorus of practitioners who believe screening mammography is great at finding early stage and treatable disease, but not as good at finding late stage disease. Nonetheless, I am glad you found NED and I wish you well for many years ahead!



Loral...my tumor was missed and believed to be a benign cyst as well. When it was felt during my annual gyno visit, I was referred for a diagnostic mammo. When the radiologist compared my mammo and sonogram from the previous year's annual radiology visit, the doctors realized the benign cyst wasn't so benign. The bottom line is that it was slow growing and treatable. I didn't know I had a drop of DCIS accompanying it until I had an MRI.

There are different "DIN's.  Colettekathryn, in your other post you indicated that you have DIN 1A and DIN1B.  That would be ADH and FEA.  And that's different than DIN 1 and DIN 2.  DIN 1 (if it's DIN 1C) can be grade 1 DCIS. DIN 2 is grade 2 DCIS  So do you know exactly what the biopsy showed?  It would be quite different if it's DIN 2 vs. DIN 1A and 1B.

Breast Epithelial Proliferations DIN

It is interesting that within the DIN groupings, grade 1 DCIS is grouped together with ADH; both are classified as DIN 1.  But grade 2 and grade 3 DCIS each have their own DIN categories.  The following article is quite relevant to the discussions that we've been having in this thread.  One comment that I noticed: "Intermediate grade DCIS (IG-DCIS) and high-grade DCIS (HG-DCIS) are obvious neoplastic lesions, graded by nuclear grade, necrosis, and architectural patterns."  Yet the latest work group doesn't even want to use the word "neoplastic" for DCIS (any DCIS).

Intraductal Proliferative Lesions of the Breast—Terminology and Biology Matter: Premalignant Lesions or Preinvasive Cancer?

Momcat, the article you linked was written by a group of Italian doctors.  Italy did change the name of DCIS to DIN several years ago.  I made mention of this way earlier in this thread, I think in one of my posts on the first page. Everywhere else (or all the places I know), it's still DCIS.

Yes, that is an excellent point, NBNotes, on the imperfect nature of screening. Not only is it challenging to identify which DCIS might become invasive, but initially discerning which conditions are concerning enough to be biopsied is also an imperfect, at best, process. It's a great aspiration to have fewer biopsies and less overtreatment, but there are so many cases I know of where a patient brings a concern to a doctor's attention only to have the fear be discounted and then later, it turns out the cancer was there all along. I agree with Beesie that, at this point, better patient and doctor communication would help eliminate much unnecessary treatment ... and maybe help doctors, by the same token, hone in on patient intuition/concern that deserve follow up.

In my opinion...if there are cancer cells, even if confined to a duct, a patient has cancer, not pre-cancer.  The difference in cancers is in the possible/average prognosis for that particular cancer and that particular patient, impossible to know without testing and followed by good doctor interpretation effectively communicated to the patient. In the example in the NBC transcript, a male had a rising psa level that put his life on hold for a year.  That rise could have been an indication of cancer but not neccessarily.  Didn't his doctor tell him about the different and very real possibilities of a rising psa level?

I thought the idea of advancements in health care - through cancer research, for example - included advancements in early detection.  Not calling cancer what it is seems like it could erase those advances and encourage people to be less vigilant, a backward move to me.  Too, what do doctors think about this?  They're in the business of saving lives and "waiting and watching" where cancer is concerned, as suggested in the interview, doesn't seem to jive with that philosophy.  Which doctor and which patient want to wait and watch a confined cancer possibly become invasive? Not me!  Also, even though the renaming of some cancers to something less scary (what's wrong with the current "staging"?) might not generally have a money motive, cost-saving matters are mentioned three times in this particular interview transcript. Lastly, I think talking about name-changing is fine but I think it's jumping the gun before more definitive and accurate research is in.         

Momcat, fair enough.  But you posted the question "DCIS but if they changed the name a few yrs ago...why do we still call it DCIS??" and you provided a link to article that referred to DCIS as DIN.

So I provided the answer.    The article was written by Italian doctors and in Italy, DCIS is DIN.  Everywhere else, it's DCIS.

Momcat,

Sorry you feel that Beesie is "calling you out". I think she was just trying to provide a bit of clarity on the DCIS/DIN nomenclature. I think it's helpful to have someone clarify or correct a post so we can be as clear as possible (in some very murky waters) about this disease. Please don't take it personally.

Caryn