Cancer / Not Cancer: what do you say to people?

Bdagal

Hi ladies - I'm just wondering what you say 1) when either initially telling people or 2) when they ask "so is it cancer or not"? I thought I had a pretty good handle on this, but then my surgeon kinda threw me off a bit the other day when I asked him, after being told that I was ER+/PR+, whether they would also test for HER2 and his response was "they only test for that if it's a real cancer.......you don't have a real cancer, so no need to do that test." (It's only a real cancer, he says, if it escapes the duct.) So now I'm kinda feeling like a fraud almost, and really stressing when talking to anyone, that it's a really early stage, stage 0 (cuz they're looking at me like well how does stage 0 even count then?) Sigh.

And what do you say to those well-meaning people, who, in an attempt to make you feel better, and especially after hearing Stage 0, minimize what you're dealing with by comparing it to someone who had it "way worse"? Because what I want to say back, is not very nice.

And finally, it's a bit worrying to me how subjective all of this is, from a pathology perspective. One path says DCIS, another says no. Our local pathologist said my biopsy showed DCIS, overseas path said no, only severely atypical hyperplasia. And from the lumpectomy, the local path identified 5 areas of DCIS totaling 22mm, yet overseas path again came back and said no to 4 of the 5 areas, citing only 4mm as DCIS. (Had the overseas report come back sooner than my lumpectomy date, I probably wouldn't even have ended up having the lumpectomy, based on a no-DCIS diagnosis, and yet here we are, it was in the lumpectomy anyway.)

Emily2008

Isn't it weird, the answers that have to be thought through?

I have been told that DCIS is pre-cancer. Many invasive breast cancers grow from DCIS. Both times I've been diagnosed with IDC there was significant DCIS present. So while DCIS may not be considered cancer is the traditional sense, it has all the ability to develop into it, given time and circumstances.

I would tell people you have ductal carcinoma in situ, which is a pre-cancer.

In terms of what to tell those who minimize your diagnosis? I suppose you could just say that you're very thankful it was caught so early and that you anticipate a full recovery. People usually mean well, but in an effort to connect with you they say stupid things. When I was first diagnosed, my sister-in-law told me about her aunt who had bc, "And, well, she ended up dying from it, but I'm sure you'll be fine." Yeah, thanks a bunch!

The discrepancies in the path reports would concern me as well. Any chance you can have it sent to another lab? I got my second opinion at Sloan Kettering in NYC. The pathologist generally concurred with my local path, but did identify a couple of components that weren't indicated in the initial report.

MTwoman

I guess I didn't go in to much detail with people, and no one I know well enough to talk details with was crass enough to ask point blank. I told people that I had caught mine early. I was only 38, so it was a bit of a shock for people who knew me, but I honestly didn't spread the news beyond people I knew well. I worked as a therapist at the local Mental Health Center and didn't want anyone who was a client or future client to be worried about ME while I was supporting them. My work was something that helped me get my mind off of bc and focus on something and someone else.

What I will say, is that there is still a lot that is unknown about DCIS. There are loads of research studies that have recently been published or are currently ongoing to understand it better. I got a second opinion on my pathology from the Dr. who literally wrote the book on DCIS, because the diagnosis itself seemed like such an important thing to get right (the treatment plan relies on it almost heavily). This was after my lumpectomy. I had all of my stuff sent to him and then continued on with meeting with my RO and planning for rads. The DAY before I was supposed to get my tattoo and mapping done, I got a report from the second opinion saying basically 'given the architecture of your DCIS and your age, you should get an mri to make certain there isn't more DCIS lurking around'. I was a bit shocked as I was in 'execute-plan' mode and that pause wasn't in my plan and there wasn't a breast mri imaging center anywhere in my state at the time. lol. I did end up going and getting the mri, which found 2 more "areas of concern" which (long story short) also turned out to be DCIS and were a bit more aggressive based on pathology. If I had not found those areas and moved on to rads, chances are good that I would have "failed" rads and had a recurrence, either more DCIS or even IDC.

What I would say to a physician who minimized my cancer by saying my cancer wasn't "real", or dismissed me by saying I didn't need a specific test because of it, is the following: You are entitled to your opinion. However, there is more and more evidence being discovered about DCIS and it's implications that you seem to have missed reading. I would be happy to provide you with very recent studies so that you might improve your knowledge in this area. Early cancer cell spread has now been show to be possible as an extension of the normal process of creating a branching tree of breast milk ducts in females:

http://www.mountsinai.org/about-us/newsroom/press-releases/researchers-reveal-how-cancer-can-spread-even-before-a-tumor-develops

and that the microenvironment of the breast itself may be what is keeping some DCIS from becoming invasive, NOT the nature of DCIS itself (based on research by Dr. Lance Liotta is a pioneer of the study of molecular mechanisms of tumor invasion and metastasis http://www.cancernetwork.com/breast-cancer/new-approach-prevents-invasiveness-ductal-carcinoma-situ-breast ) .

I would also be reluctant to continue working with a physician who was so dismissive of me. I wrestled with the "is it or is it not" issue myself, for awhile, as I ended up having to have mx (instead of my preference for lx) because of the multi-focality of my DCIS. I thought, 'well if it wasn't really cancer, then why did I have to have a whole breast lopped off?' But none of my team questioned the need for the mx or that somehow that was overtreatment. I am so sorry you had this experience. I found out later that one of my surgeons (who was particularly helpful and supportive) had been one of those dismissive, condescending types prior to his own wife's bc. After that, he was transformed into a compassionate provider.

Bdagal, the questions surrounding your pathology are certainly important. If I were you I would want a 'tie-breaker' to feel confident that I knew what was really going on. If you are interested, the guy who "wrote the book" on DCIS is named Michael Lagios and you can find information about him and his second opinion services here: http://www.breastcancerconsultdr.com/about_dr_lagios/about_dr_lagios.html)

MTwoman

just found this quote on Michael lagios' site " Unfortunately, inadvertent errors in interpretation, either for the actual diagnosis of carcinoma, or in evaluating size, stage and margins, are commonplace. The National Cancer Institute (NCI) and the American Cancer Society (ACS) strongly recommend a pathology review of the slides, particularly for duct carcinoma in situ and other non-invasive lesions, for which the error rate on review may be as high as 25%. A second opinion may make the difference between a benign hyperplasia vs. an in situ carcinoma, the need for re-excision, radiation therapy and/or chemotherapy. Second opinions can also help by confirming a diagnosis and providing reassurance that the patient is making a reasonable choice."

ksusan

"Cancer. Fortunately, a form that's easier to treat, with a low recurrence rate." Why split hairs about it? I had widespread DCIS in one breast, grade 3. I really had no option but a mastectomy. I'm very glad it was a lower grade cancer, or a pre-cancer (though its name does include "carcinoma"), but I don't feel apologetic about that. My other breast wasn't so lucky.

Susug

This drives me crazy when DCIS is called pre cancer. They don't treat patients with radiation if it's not cancer. I had a lumpectomy with 6 weeks of radiation. I had several options they all called it DCIS. Wish you well dbagal. I haven't updated my most recent diagnosis. I had IDC in left breast and 2 yrs later I was diognosed with DCIS in right.

candles1

I tell people it was a precancer that had to be removed because sometimes DCIS does become cancer.

I don't like attention focused on me or my health and so I much prefer to minimize the diagnosis. I also have a few friends going through chemotherapy for invasive cancers and no way no how can I compare my situation with theirs.

TrmTab

NIH defines DCIS as "A noninvasive condition in which abnormal cells are found in the lining of a breast duct"

I think this is their scientific conclusion...that said DCIS is still categorized with BC in general to provide US with the health care access afforded by the BC diagnosis. Maybe I am too pragmatic, but I believe that is true.

All that said, I don't tell folks I had cancer...mainly because I have an active 82 y.o. mother who it would kill to hear her youngest has cancer...I said it's not invasive, but it has to go. And that is all I said, one time and we don't talk about it.

LAstar

I say that I had a very early-stage breast cancer. I don't really want to discuss it at length with people who know nothing about it and then have to defend why I needed a mastectomy. If someone is interested and wants to know more, I'll tell them more but I try to keep it short and sweet.

PNWBCHgirl

It really depends who I am talking to but I usually just say: " had a very early stage of Breast Cancer that was not invasive yet". It leaves room for questions if they or I am comfortable to carry on in more detail.

I think the medical profession tells DCIS patients about the pre cancer status to assure us that it is very early stage and survival rate is High if treated now verses later and taking the wait and see approach.

Mine was grade 3 and I was glad for the diagnosis because why wouldn't you do anything and everything to prevent cancer if you knew about it?

kalenji

I tell people that I had very early stage breast cancer or stage 0 breast cancer. I find that saying pre-cancer is rather ambiguous. That said, everyone assumed that I had some lump in my breast. I got tired of explaining that I didn't have a lump, but that my ducts were abnormal.

For my 80yo mother, I told her that scans found some abnormality in my breast and I needed surgery to remove it. We never used the word 'cancer' between us, probably cos my dad had then just died of lung cancer and the word cancer was rather sensitive to us. My mom also assumed that the surgery was to remove a lump. I don't think she was aware that I had a mastectomy. I hope to keep letting her think that I still have two natural breasts.

Annette47

I just say “they caught it very early". I did have a micro-invasion though, so I guess that counts as “real” cancer, LOL, although it really didn’t change much for me. I only go into more detail with specific people, usually those who have their own diagnoses.

TB90

Mx and radiation . .. . equals cancer. Thankful it was non-invasive, but I will never defend my total terror and gratitude to anyone. It is what it is.

Bluebirdgirl

I tell them I had cancer...because I did. End of story

ShaneOak

Bdagal, sorry that you had to join us and please know that everyone here understands what your going through.

I never feel the need to justify/convince/explain that I had cancer to anyone. I'm the one that had the surgery, endured the pain, and still almost 5 years later am dealing with the effects. I'd had a pretty big lawsuit on my hands if my doctor removed my breasts for "not really cancer". 😉

You have the right to say whatever you feel and not feel bad about it.

VelvetPoppy

~Bdagal~

I just had to say something! DCIS is still cancer, according to my BS. I was diagnosed with DCIS before the IDC was found and I was in conversation about what to do. I questioned the need for surgery, but the BS said she thought it would be best to go in an "clean it out" and check the margins. I wasn't looking at any radiation at the time, but the name says it all for me: ductal Carcinoma in situ. This is a definition from the Mayo Clinic: Ductal carcinoma in situ (DCIS) is the presence of abnormal cells inside a milk duct in the breast. DCIS is considered the earliest form of breast cancer. DCIS is noninvasive, meaning it hasn't spread out of the milk duct to invade other parts of the breast.Jun 14, 2014

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have2laugh

Velvetpoppy- I think the definition by the Mayo Clinic is very straight forward. It is unfortunate we continue to need to have these discussions amongst ourselves and with others regarding what exactly DCIS is. I tell people I had an early breast cancer-if they want to ask more I'm up for it. I will say I was a little hurt to have had it come back to me during treatment that several people told others, that's not really cancer or you know that's not really cancer, right? But I considered the sources and let it go. I knew nothing about DCIS prior to diagnosis even though I was high risk with two sisters with IDC and frequent screenings. I never heard of it and neither had they-I am nurse now a nurse practitioner but I didn't work in oncology. I'm grateful I can say it was an early breast cancer.

I attended a lecture at our regional cancer center last night on the latest trends in breast cancer treatment and they very clearly described DCIS as stage 0 breast cancer confined to the ductal system. Lots of new things out there treatment wise so I learned a lot and I'd recommend people take advantage of these free lectures. This was geared to providers but I think a lot of women would understand the information they're going over. So I suppose explaining DCIS to people increases awareness but I do think some people overstep in their advise or occasional judgment of treatment-I trusted my medical team to make the best decision based on my history and pathology. The internet is great but it can't replace the experience, training and clinical judgment of our providers.

proudtospin

well i was diagnoses with dcis in 08, did all the recomendations of lumpies, rads and 5 years of aromasin. There had been a small amount of micri invasion found that my docs seemed to feel were handled

8 years later.....cancer has appeared in my liver so take it seriously folks

Bluebirdgirl

Thanks for sharing that Proudtospin, well said. It should be taken seriously and I feel like some doctors downplay how dangerous it is. I speak from personal experience, having an oncologist, AFTER my BMX, tell me I didn't have cancer and I should not have had BMX. Needless to say, I found a new oncologist!

Beesie

proudtospin, your situation does provide an important message that any diagnosis should be taken seriously, however it is also very important to point out that a diagnosis of DCIS-Mi (DCIS with a microinvasion) is not the same as a diagnosis of pure DCIS.

DCIS-Mi, despite having "DCIS" in the name, is in fact an invasive cancer diagnosis. It is a Stage I breast cancer. DCIS on the other hand is a pre-invasive condition and is Stage 0.

My diagnosis was DCIS-Mi, and while my oncologist was extremely optimistic about my prognosis, he was very clear about the fact that I do have a small risk of mets. When I had a mets scare a few years ago (a spot was discovered on my spine during a routine breast MRI), he took the situation very seriously. Fortunately that turned out to be a false alarm.

Even though most of us who've had DCIS-Mi tend to think of ourselves as DCIS patients and tend to hang out in the DCIS forum, the fact is that we didn't have DCIS - we had invasive cancer, along with some DCIS. And that diagnosis comes with a different risk than a diagnosis of pure DCIS.

As for DCIS, I've been reading up on it for over 11 years now, and I've noticed that more and more of the respected medical information sources are now avoiding the use of the word "cancer". It's about 50/50 now between those that consider DCIS to be a pre-cancer vs those that consider DCIS to be a cancer. Back 11 years ago, it was probably 90/10 in favor of DCIS being defined as a "cancer". One example of this change comes from the The National Cancer Institute, which I'm pretty sure used to define DCIS as a "cancer" but now calls it a "noninvasive condition in which abnormal cells are found in the lining of a breast duct." https://www.cancer.gov/publications/dictionaries/cancer-terms?cdrid=44394

For medical and scientific purists, the reason DCIS is not be considered to be a cancer is because DCIS technically does not have the ability to metastasize. Many definitions of cancer include "the ability to metastasize" as one of the criteria, and based on that, DCIS cannot be called a cancer. Other definitions simply say that cancers cells have "the ability to spread" and since DCIS can spread wildly within the ductal system of the breast, DCIS does fit that definition of cancer. But that's the medical reason why some doctors and many respected medical institutions say that DCIS isn't cancer. Here's more from the NCI, in their definition of What is Cancer? "An even more serious condition is carcinoma in situ. Although it is sometimes called cancer, carcinoma in situ is not cancer because the abnormal cells do not spread beyond the original tissue. That is, they do not invade nearby tissue the way that cancer cells do. But, because some carcinomas in situ may become cancer, they are usually treated."

I'm not trying to upset anyone - or challenge what anyone believes (and personally I really am on the fence about it) - but I'm just trying to explain that there is logic behind both the "cancer" and "pre-cancer" definitions of DCIS.

Bluebirdgirl

Really, we are playing the my cancer is worse than your cancer game? I think by now most of us have read all about the controversy of DCIS. Maybe you haven't read the new study about how they believe pure DCIS CAN metastasize. I don't have the link but I can find it. Very rare but possible. In the end, we are all entitled to our opinion. But I did not have a BMX because I had some benign little cells hanging out in my ducts that were gonna stay confined for the next 10 to 15 years. I had grade 3 with comedonecrosis. So my cancer was ALMOST as bad as yours, but not quite (yes, sarcasm.). My mom had IDC, so she trumps us both!! Jeez

SummerAngel

Bluebirdgirl, I must come to Bessie's defense here. If you read her entire post you will see that she is just adding more information to the discussion and did not try to "one up" anyone's diagnosis. I occasionally read these types of threads about DCIS because it is an area that is rapidly changing in the medical community and I find it fascinating. I'm sure it's very frustrating for those with this diagnosis to be told on the one hand that it's "not real cancer" but at the same time told that you must have the same treatments as those with "real" cancer. I hope that the current research that's being done will help clarify things in the future.

MTwoman

I will say, I initially had the same reaction as Bluebirdgirl to Beesie's post. But much of the research that I've been finding intriguing is looking at the connection (as a continuum of disease) between DCIS and cancer. There are many researchers exploring the relationship from different aspects of the cancer development process. Some of the articles have looked at what is in the micro-environment of the cell that keeps DCIS from progressing (they make the assumption that DCIS is always capable of becoming invasive, but is kept in check by certain factors), some have looked at the architecture patterns of DCIS and how these actually also represent a continuum of disease. There have been researchers looking at how the DCIS architecture pattern itself defines where the stress is places on the duct walls and how this is more or less likely to cause migration outside. Most researchers I am following (so there could be a selection bias here?) make the assumption that DCIS is the earliest stage of what can turn invasive (meaning some of it eventually will and some of it will not - but which is which is not understood). I would posit that, on the continuum, DCIS-MI is between the two. So whether there is something inherently different between DCIS and cancer, or whether something additional/absent in the micro-environment is the difference, or whether there are actually differences in the types of DCIS, or whether there must be a "perfect storm" of factors; no one knows.

the link for the article on DCIS being able to metastasize is here:

https://community.breastcancer.org/forum/73/topics/851261?page=1#idx_15

BarredOwl

By my reading, Beesie was not trying to one-up anyone or to criticize anyone's treatment choices. She expressly acknowledged that "any diagnosis should be taken seriously." I see nothing in her post above that would suggest that surgical treatment is inappropriate for any form of DCIS (of any grade or architecture). Beesie kindly explained the basis for the differing views in the medical community that DCIS is "cancer" or DCIS is "pre-cancer". This is an appropriate subject for a thread entitled, "Cancer / Not Cancer: what do you say to people?" It may be old-hat for some, but probably not for those newly diagnosed. To discuss these differing views, while endorsing neither (she is "on the fence"), does not speak to the need for treatment. In fact, members in both camps recommend standard treatment. For those interested in Beesie's views regarding treatment of DCIS, luckily we have more than 10 years of posts at our disposal, and they appear to be consistent with clinical consensus guidelines, which currently provide for surgical excision. See for example, her comprehensive Layperson's guide to DCIS here:

https://community.breastcancer.org/forum/68/topics/790992?page=8#idx_229

Perhaps I am not understanding properly what MTWoman is saying, but I do not view "DCIS-MI" (DCIS with microinvasion) as being on a continuum falling somewhere between non-invasive disease and invasive disease. With DCIS-MI, the presence of invasive breast cancer has been identified by the pathologist, meaning that there are cells that are "invasive", because they have broken through the myoepithelial layer of cells surrounding duct, invaded the surrounding tissue, and formed a small invasive tumor. "Invasive" breast cancer is widely recognized as having some inherent potential for distant metastasis, although the level of risk appears to vary depending on a variety of factors (e.g., tumor histology, tumor size, lymph node status, hormone-receptor status, HER2 status).

Once any invasion is present (no matter how small), the pathologic diagnosis is "invasive" breast cancer (Stage IA or higher), and is no longer Stage 0 (pure DCIS). Under AJCC staging (7th edition), you can see that tumors that are pT1, N0, M0 are considered to be Stage IA. The note to the right of the table makes clear that T1 includes T1mi (invasive Tumor ≤ 1 mm in greatest dimension (i.e., microinvasive tumors)).

https://cancerstaging.org/references-tools/quickreferences/Documents/BreastMedium.pdf

Different clinical consensus guidelines regarding adjuvant systemic therapy apply to patients with Stage 0 (pTis N0 M0) disease versus those with Stage I disease (pT1 N0 M0, pT1mi N0 M0):

Pure DCIS (Stage 0 disease) is never treated with chemotherapy or HER2-targeted therapy under consensus guidelines.

In sharp contrast, reflecting a differences in the risk of metastatic potential, in the appropriate case, some patients with HER2-positive microinvasive disease may receive systemic adjuvant chemotherapy plus trastuzumab. Such treatment, when recommended, is within NCCN guidelines (Version 1.2017) applicable to HER2-positive, node-negative (N0), ductal, lobular, metaplastic or mixed invasive breast cancer where the "Tumor ≤0.5 cm including microinvasive".

When I say there is "a difference in the risk of metastatic potential", I mean that microinvasive disease generally poses a greater risk of metastatic potential than the typical case of DCIS. This is the second point Beesie made above in noting that a person with DCIS-MI (Stage I) may be differently situated than the typical patient with DCIS (Stage 0).

I am not saying that those formally diagnosed with DCIS (Stage 0) have zero risk. There are certain clinical studies reporting on cases in which patients initially diagnosed as having DCIS (Stage 0), were later diagnosed with metastatic disease, without an intervening diagnosis of invasive disease (see, e.g., Narod (2015) and citations therein). Such observations are not consistent with a view that DCIS is always purely "non-invasive" and is incapable of distant spread. So, what could explain this?

Narod (2015): http://jamanetwork.com/journals/jamaoncology/article-abstract/2427491

Narod (2015), which I purchased, was a very large, retrospective, observational study of 108,196 women with DCIS, that relied on data in the SEER database. Narod proposed the existence of some small subset of DCIS (Stage 0) that is actually capable of distant metastasis. In my view, other possible explanations have not been eliminated, including the presence of invasive disease that was either not recorded or appreciated:

(1) Initial mis-diagnosis of "pure" DCIS, for example, in which a small invasive component was not detected due to the limitations of pathology or due to an error in recognizing the presence of invasion (which can be very small)

(2) Deficiencies in record-keeping, in which "DCIS-MI" (Stage I) was improperly recorded as "DCIS" (Stage 0) or in which intervening recurrent invasive disease was not recorded or captured

(3) "Occult" breast cancer (rare) with associated DCIS, wherein an invasive tumor cannot be found (e.g., the immune system may eradicate an invasive tumor, but not before some cells escaped to distant sites).

Again, as noted above, such progression appears to be unusual to rare. If any or all of (1), (2) and/or (3) are in play, the observed frequency may be even lower than reported.

The Harper (2016) and Hosseini (2016), studies in HER2-driven breast cancer mouse models (which Beesie commented on in December), speak to mechanisms of metastasis and suggested that certain tumor cells might acquire metastatic potential earlier than appreciated. Sadly, these articles are also behind a paywall. The observations were said to provide a mechanistic explanation for some cases of occult breast cancer, where no primary invasive tumor can be located in the breast by pathology. As regards the metastatic potential of DCIS, the findings were consistent with Narod's hypothesis regarding the possible existence of an aggressive form of DCIS, but given the limitations of such experimental systems in recapitulating human disease, they do not seem to be dispositive of the question. Perhaps time will tell.

Meanwhile, the long-term prognosis of those whose final pathologic diagnosis is pure DCIS (Stage 0) and who are treated according to current standards of care remains excellent. The prognosis of those with node-negative microinvasive disease (Stage IA) is also very good.

BarredOwl

[Edit: The sentence: "The presence of any invasion, no matter how small, is considered to be Stage I disease as noted above" has been revised to read: "Once any invasion is present (no matter how small), the pathologic diagnosis is "invasive" breast cancer (Stage IA or higher), and is no longer Stage 0 (pure DCIS)."

Beesie

Over the years that I have been on this site, I've seen probably 100 women, if not more, who've had an initial diagnosis of DCIS and who've come back later and posted either here in the DCIS forum or in the Stage IV forum, saying that they've developed mets. This always scares the crap out of newly diagnosed DCIS women. But here's the thing. Of those 100 or so women, upon further discussion, it's turned out that only one (that I have ever encountered on this site) actually did start out with an initial diagnosis of pure Stage 0 DCIS. The rest either had DCIS in combination with invasive cancer (sometimes just a microinvasion (DCIS-Mi), sometimes more) or had an invasive recurrence sometime after the DCIS diagnosis.

There was a study a few years back that found that women diagnosed with DCIS believed that they had a higher chance of dying from breast cancer than did women who were diagnosed with invasive cancer.

And that's why I wrote my earlier post. It's natural to be scared when we are diagnosed, and it's natural to think the worst, but comparing the risks of DCIS with the risks of invasive disease - even an invasive disease such as DCIS-Mi, which in some ways seems to be closer to DCIS than to other more serious invasive breast cancers - is misleading and will only drive unnecessary fears. The DCIS vs. DCIS-Mi distinction, while not relevant in most cases (I really don't see my diagnosis to be any different from a diagnosis of pure DCIS) becomes hugely relevant when someone with DCIS-Mi develops mets.

As for whether DCIS should or should not be defined as being "cancer", I was trying to add to the discussion by explaining that there are legitimate arguments on both sides. Doctors who call DCIS a pre-cancer are not crazy or insensitive; they are simply looking at the definition of cancer one way vs. other doctors (and most patients) who choose to look at the definition another way.

For those who had a MX or BMX for DCIS.... what difference does the definition of DCIS make to this decision? Some women have a BMX for ADH, which is considered to be a high risk condition (not yet a pre-cancer). Some women have a prophylactic BMX because they are high risk. I had a UMX - not because of that tiny 1mm invasive cancer (which had already been removed during my excisional biopsy) but because I had over 8 cm of high grade DCIS with comedonecrosis spread throughout my small breast. My MX was medically required - I didn't have a choice - because although all that DCIS may be been harmless at the time it was found and removed, had it not been removed when it was, at some point in the future I most likely would have ended up with extensive invasive cancer. So whether my surgeon or oncologist happened to believe that my DCIS was a cancer or pre-cancer was irrelevant; what was relevant was that the DCIS had to come out and the only way to do that was with a MX.

MTWoman, the study that you linked, which I think is the one that Bluebirdgirl was referring to, presented a hypothesis on how mets might develop based on the manipulation of cells in a petri dish, and based on mouse models. One of the findings of this study was that in a petri dish, if DCIS cells are manipulated in a certain way as they develop, some of those DCIS cells develop the ability to metastasize when those cells are placed inside a mouse. "... in their experiments, they found that if HER2 is over-activated (not switched off) or mutated, and p38 is permanently turned off, EMT was continually activated, allowing cells to move out of the mammary gland and into the animal's body through the blood." All of which begs the following questions: Do DCIS cells in our bodies ever change in the same way that they were manipulated in those petri dishes in a lab? And does what happened in the mouses' bodies actually happen the same way in human bodies? Maybe, but more likely not (given the small percent of medical hypotheses that prove correct).

There is another study from 2015, which looked at over 100,000 women, that did in fact find that a fraction of a percent of DCIS patients experience metastasis without first developing an in-breast invasive cancer. Breast Cancer Mortality After a Diagnosis of Ductal Carcinoma In Situ In my 11+ years of reading up on DCIS, this was by far the most concerning and pessimistic study about DCIS, but even here, the rate of mets (for those not subsequently diagnosed with invasive cancer) was only 0.48% (less than 1/2 a percent). That said, it's still concerning. However since this finding is inconsistent with most of the findings of previous studies on DCIS, the question is, what might have been missed? Certainly one possibility is occult invasive cancers. Tiny areas of invasion, such as microinvasions, can be hard to find in cases where the patient has a large amount of DCIS. Unfortunately not all pathologists look thoroughly at all the removed breast cancer (especially the areas that don't have any evident cancer), and it does happen that small invasions are missed. Not often, but how often? Often enough to explain some or most of the 1/2 a percent? Maybe, maybe not. But the point is that it's premature to draw any conclusions from one study about whether and how DCIS might metastasize without there first being an in-breast invasive cancer (either an invasive recurrence or a new invasive cancer).

And that brings me to a more recent study, released in January of this year, which found that women aged 50+ who were diagnosed with DCIS had a 10% lower chance of dying (from all causes) over the next 10 years than those never diagnosed with DCIS. The breast cancer mortality rate of these women was quite low (1.4% over 10 years for the 50+ age group) but was higher than the breast cancer mortality rate of those never diagnosed with DCIS. However the mortality rate from all other causes was lower for the DCIS women, leading to an overall 10% lower mortality rate. The theory is that these women may be more health conscious - which might be why the DCIS was found in the first place - or perhaps a diagnosis of DCIS drives them to become more careful about their health and develop healthier habits. Women With DCIS Live Longer Than General Population

And on that note, and with all those clarifications, I will sign off. I remember now why it is that over the past few years I've pretty much stopped posting on this site.

EDITED for typos only. BarredOwl, we were posting at the same time. Thank you for providing the additional information about DCIS-Mi and the research studies.

ksusan

Thanks to both of you--you're always clear and informative!

Bluebirdgirl

This is the exact reason I have decided not to attend the local breast cancer support group in my area. The women "on the fence" whether I really had cancer. No thanks. MTwoman, thanks for,posting the link I was referring to. Sadly, it's just Petri dishes and mice so it doesn't matter either I guess.

LisaAlissa

Beesie,

I hope (notwithstanding the foregoing) that you will continue to come back here from time to time. Your posts on DCIS remain the most thoughtful, well researched, compassionate and helpful to those who are in the midst of panicking over their new diagnosis.

It would be a real shame for newbies to miss your wisdom.

LisaAlissa

MTwoman

Bluebirdgirl, I would imagine that who is facilitating the local breast cancer support group would dramatically impact your experience. Just like what happened above, a conversation about women's experience of DCIS, and "what they say to people" got moved towards a more clinical approach; which seems to negates women's experience. In science, there is a correct answer, there are statistics and diagnostics. In a person's experience there isn't a right or wrong, it just is. There is certainly room for both science and emotional experience, but it is quite difficult to accommodate both in a single conversation. There are always women who are very interested in (and more comfortable with) the scientific facts. For some women, they are more important than the individual experience, which moves away from the science and into the realm of psychology. The support group would depend on whether the group facilitator was more comfortable with "facts" or emotional experiences (or both), and whether she was really skilled in navigating groups. As for the petri dishes and mice, where do you think ground breaking research starts? ((hugs))

ChiSandy

Bluebirdgirl, if it makes you feel any better I sometimes feel a disconnect with some of the women in my support group too—I feel guilty that I was lucky enough, despite having grade 2 IDC 1.3cm, to have been able to keep both my breast and my hair. No chemo, lust lx, rads, and letrozole. But nobody there made me feel I was an impostor. Most women I know with DCIS, while chemo wasn't necessary, had it multifocally and high grade—so they had BMX, some with grueling reconstructive surgery, some stayed flat, and about half of them needed endocrine therapy too. I don't think they “didn't have cancer" nor that anyone in the room would think that.

Where in IL are you? If in the Chicago area and not going to the NorthShore Evanston group, you might want to give us a chance—we have had patients getting their treatment elsewhere. The facilitator makes a world of difference and our new one is quite good.

ShaneOak

Sorry, have to put my two cents in because this is a big button pusher for me.

I really feel that it's not about someone being right or wrong. It's about the RIGHT that everyone has with any breast cancer diagnosis to feel however the h*ll they want without argument or judgement. People need to find their own way through this journey none of us asked to be a part of.