Anyone decide against DCIS treatment?

Hi Alladream,

I have been reading Bessie's posts since I started with this board about a month and a half ago. I have found her info to be correct, concise, and very easy to understand. Thanks so much Bessie!



Just last week I had a conversation with my BS that I wanted to relate to you while you are going through the decision making process. My initial biopsies came back with low grade DCIS, and I questioned whether it had changed to high grade in the month between the biopsy and the lumpectomy or whether we had just missed the high grade stuff initially. We had taken 5 samples during the initial biopsies. His answer was that the biopsy samples are tiny, and when taken out of context to the whole area they did not show the characteristics of high grade DCIS. The biopsies also did not grab any of the necrotic cells present. So it didn't change, but when the pathology was done on the area as a whole this changed the diagnosis. This is now leading to more tests to make sure there is nothing else going on that we don't know about before I start rads.



My journey started with a small area of low grade DCIS that we didn't even plan to do rads for, and due to other issues had decided against tamoxifen. Now I am at high grade DCIS with a dirty margin we can't get clean looking for other problems before starting rads.



Breast cancer can be a sneaky adversary.

As always, great advice from everyone.

This topic of "Pre Cancer" will always be discussed, and hotly contested.

Cyclepath, you are right about the reasons for testing. I too, had pre cancers removed during a colonoscopy, diathermy for cells in the cervix, and a after a year of asking about a funny thing on my shoulder, a fair chunk taken out with a nasty skin cancer. I was so glad to have found,  and dealt with them, at this early stage.

When I was diagnosed with DCIS after a core biopsy that took 8 cores and found grade 2/3 DCIS there wasn't a lot to think about, other than, which surgery was I going to have. To my way of thinking, if there is intermediate, and high grade there, it's working its way forward to become something more sinister. I was also warned, that in some cases there is an invasive component found in the final pathology.

Was I going to consider waiting to see if it was going to go away on its own, or freak out every time I had to have a test to see if it had progressed? I don't think so!  But in saying that, that's just me. I don't condemn anyone for deciding to do what is right for them.

There is a very fine line in the semantics of DCIS. On the one hand it is considered pre cancer, so can be misconstrued as "harmless", then there is the word "carcinoma", which indicates cancer, and scares the crap out of most who are given the diagnosis.

We all come to our own decision about treatments when we have researched and discussed options with our team.

I wish you all the best Alladream, you'll make the right decision for you. Let us know how it goes.

CTMOM1234, I agree; this post raised red flags with me when I first read it, poster did not even say she had DCIS, seems to be someone just throwing an opinion out there to misguide others and get a reaction.  Bessie, heart, cycle, ariom; you are gracious and thoughtful with your responses, you have wisdom knowing that if someones reads the original post, he/she will understand DCIS for what it is, breast cancer.  Thank you.

Hi all,

I agree with Beesie, that the notion that DCIS might be a pre-cancer or pre-invasive state is definitely actively discussed in the mainstream literature.  I have quoted, below, the summary statement from a National Institutes of Health consensus conference held in 2009, which recommended removing "carcinoma" from the DCIS label.  The conference also addressed the issue that there are many factors in DCIS and it appears in many forms (varying in aggressiveness, size, etc.) making it, perhaps, more than one disease entity.  The conference addressed the issue that some portion of the DCIS population may not need as much or as aggressive treatment as others.  They actually state that there may be a subset of DCIS patients who may not need intervention beyond the biopsy, other than surveillance.  So, they believe (they haven't gotten to the point of recommending this yet) that there may be patients who actually only warrant surveillance. So, Alladream's question may not be so outlandish. 

Myself, before I got back my first excisional (surgical) biopsy results (the stereotx biopsy showed ADH), wondered if I could do watchful waiting or just surgery if I had a small amount of low grade DCIS.  Well, I ended up with lots of high grade DCIS with necrosis (multifocal) extending to all surgical margins, requiring multiple surgeries and rads.  So, I didn't hestitate to proceed with treatment.

NIH State-of-the-Science Conference:
Diagnosis and Management of
Ductal Carcinoma in Situ (DCIS)

September 22-24, 2009
Bethesda, Maryland

"The diagnosis and management of DCIS is highly complex with many unanswered questions, including the fundamental natural history of untreated disease. Because of the noninvasive nature of DCIS, coupled with its favorable prognosis, strong consideration should be given to remove the anxiety-producing term "carcinoma" from the description of DCIS. The outcomes in women treated with available therapies are excellent. Thus, the primary question for future research must focus on the accurate identification of patient subsets diagnosed with DCIS, including those persons who may be managed with less therapeutic intervention without sacrificing the excellent outcomes presently achieved. Essential in this quest will be the development and validation of accurate risk stratification methods based on a comprehensive understanding of the clinical, radiological, pathological, and biological factors associated with DCIS."

Thanks Jill, I wasn't sure about the poster either, but thought that there would be others who would read this thread simply because of it's title.

I had a mammogram at a new facility with a new digital machine. The microcalcifications found on this mammogram weren't picked up on my previous analogue films. Had I gone back to the original place with the analogue machine, I probably wouldn't have been called back for a biopsy. 

My Biopsy showed Intermediate and High grade DCIS, I figured it probably started as low grade, so it sure wasn't going backwards. My final pathology confirmed that Dx.

I don't regret my Mx decision for a moment, and if anything was to turn up on my good side, I'd have it off in a heartbeat.

I was diagnosed with it 11 years ago (low grade type) and have not had any treatment.  My experience was very negative.  I questioned the diagnosis after doing a lot of research.  I didn't understand why I was being told I didn't really have cancer, but I was supposed to get the same treatment as if I did have cancer.  The medical people were stunned and didn't seem to like me, because I wasn't exhibiting the fear that they usually feel more comfortable with.  I had an MRI a few years later that showed that my breast was fine.  I then started doing thermograms.  I'll never go near a mammogram machine again.  I know this is a very painful issue for women, and it's very confusing.  However, no way was I getting on the treadmill unless it was absolutely necessary.   I have a feeling that certain types of DCIS will be reclassied at some point in the future.  

It really bothers me when people say DCIS isn't cancer. Yes, it is. Carcinoma is cancer. DCIS is simply "contained carcinoma AKA cancer".

Hi digger,

I was also confused about what happened with Kim.  I believe (and Beesie correct me if I'm wrong), that Grade 2 doesn't become Grade 3, and therefore more aggressive.  It is possible that the first pathology report read it as Grade 2 and the second as Grade 3, or there was a mixture of Grade 2 and Grade 3, or this was a completely different focus from the area of the first biopsy.  The ER/PR signature was also different.  Again, different parts of the same pathology can have different ER/PR receptivity, or it could be a different focus.

Also, all grades of DCIS have the potential to become invasive, as Beesie stated, but it's a matter of how soon.  Grade 3 is more aggressive and more likely to become invasive, and if it does it's likely to happen sooner.  Even Grade 1 can potentially become invasive, especially if never treated, but it might take much longer.  That's why leaving any DCIS alone is potentially dangerous.

Heart, that makes sense. 

And as ballet said, it's also possible to have a mixture of different grades.  My excisional biopsy - which removed two large areas of DCIS - found only Grade 3 DCIS (along with ADH).  My subsequent mastectomy found more Grade 3 DCIS and some Grade 2 DCIS.  I also was found in both pathologies to have pretty much every subtype of DCIS - papillary, micropapillary, solid, cribiform, comedo....

It does seem logical that Grade 1 DCIS might develop to become Grade 2 DCIS and then on to be Grade 3 DCIS and that used to be the theory.  However, recent stuides and literature suggests that most often cancer does not develop this way.

"...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...  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."

Also very interesting: 

"For example, grade 1 DCIS has been shown to exhibit a significantly lower overall frequency of chromosomal changes than low-grade (well-differentiated) invasive carcinomas, but no individual chromosomal regions effectively differentiate low-grade in situ from invasive disease. In contrast, high-grade (poorly-differentiated) invasive tumors did not show significantly higher levels of AI than grade 3 DCIS, but AI events at specific chromosomal regions (1p36 and 11q23) were significantly more frequent in high-grade invasive tumors compared to high-grade DCIS. Lower levels of AI in low-grade in situ lesions compared to low-grade invasive carcinomas may reflect the protracted time-to-progression associated with low-grade DCIS. Likewise, increased levels of AI at 1p36 and 11q23 in high-grade carcinomas suggest that these chromosomal regions may harbor genes associated with invasiveness. Therefore, consideration of histological grade when analyzing genetic data has the potential to identify molecular changes associated with invasion and to define molecular signatures of aggressive behavior for low-grade and high-grade disease."

And, specific to Grade 2:

"In our ongoing studies of intermediate-grade breast carcinomas, we observed that clinicopathological characteristics and overall levels of genomic alterations in grade 2 tumors were generally intermediate compared to low-grade and high-grade disease. Specifically, 47% of the intermediate-grade tumors showed patterns of genomic alterations similar to high-grade tumors, while 11% had a low-grade signature where AI was detected only at chromosome 16q. Of note, 24% of cases showed genetic features representing a mixture of low-grade and high-grade disease, while 18% had a unique genomic profile not observed in either high- or low-grade tumors. These data suggest that intermediate-grade carcinomas should not be classified as a discrete disease type, but represent a blend of low-grade and high-grade diseases."

Source:  Genomic Heterogeneity of Breast Tumor Pathogenesis

Very interesting everyone, thanks so much for clarifying the fault in my logic.