does size of DCIS mean anything?

Hi mom3band1g I have always wondered the same thing as I have friends who tell me my area is pretty small.....when first diagnosed I was told the area of concern was over 9 cm's but when actually surgically removed, all that was active was 2 areas totaling 2 cm's.  I have high grade 3/3 which alot of the area of concern was already dead, (fast moving) if that makes any sense at all........and yes mine was missed during my 2008 mammo so my area was larger because it had a lot of time to grow than most if caught right away......thank gosh it was not at all invasive.

DCIS less than 5 millimeters in size almost never has a risk of IDC being present in that breast with the DCIS pathology.  DCIS that is found by mammogram is far less likely to recur than DCIS that was palpable as a lump, but the overall risk of recurrence with DCIS is small.  They have also identified some markers that are good indicators of recurrence risk with DCIS, so as we go forward they will be able to target which women need to followed more aggressively.  Obviously the smaller the DCIS, the more options you have surgically. I am just grateful mine was found early.

My calcs were 4mm ( I think the DCIS was about 2mm) and I asked the Dr. if we caught it in the first 5 minutes of  life. He said that he didn't know. Either they were always there (only seen now because of the digital mammo) or my body stopped the progression, or that they were just starting to grow slowly and that they may have turned invasive in several years. I am just grateful that 4mm was seen on the mammo. My breasts are pretty dense. Good rad doc, I guess.

I have wondered that a lot too. I probably the largest area of anyone in history with DCIS who only had a lumpectomy + reexcision instead of mammo (I had a 4.5cm lump but DCIS that was more extensive than that -- they removed an area that was close to 9cm long) and I was absolutely stunned that no microinvasions were found. (After my first biopsy, my doctor himself was stunned that it wasn't outright invasive -- apparently, my huge lump felt like it was according to him and two other doctors!)

Personally, I believe my DCIS spread so rapidly because of certain specific factors.. but again, why I would have such a large area of DCIS without a microinvasion is beyond me.

This is a technical answer to the question - how long has DCIS been growing?

For a cell to go from normal to an actual cancer cell takes quite a number of changes in the DNA (genes). As the changes occur, the affected cell - and all of its offspring cells! - are less and less under the control of signals from the body that tell them when NOT to divide. They divide more and more, setting up clusters of abnormal cells -- at first, each such cell and its daughter cells become a site of normal ductal hyperplasia, then ADH, then DCIS. Such groups of cellls can be smaller or larger, depending on how mny times they divide between succesive DNA changes. At each stage, additional changes *may* take place in one or another of the daughter cells -- or not. So there may be an area where all the cells but one have enough abnormalities to be ADH, and then one cell in that cluster gets another DNA change, and becomes the beginning of a DCIS site .... and maybe one cell in the DCIS cluster goes a bit more abnormal, and becomes invasive (but we won't recognize it until there are enough such cells to detect in a biopsy).

Some women have a single cluster of abnormal cells, all deriving from 1 single cell that went bad -- a clone. If the cluster is made up of cells that all went totally abnormal - became cancer cells - there's a single invasive site. Sometimes what happens is that a bunch of different cells (maybe even in different parts of the breast) start on the road to becoming cancer cells. But some of them never go beyond normal hyperplasia, and some go on to ADH, and some go on to DCIS ... in that case, there will be foci of ADH, and of DCIS, and maybe of IDC. And some of the IDC is surrounded by DCIS, and/or by ADH, etc...

It isn't so much a question of how long since the original cell went amok, but how many cells went amok, and how many went through all the changes needed to turn into cancer cells.

And of course, what we don't usually know is: what makes a cell go amok. We know it's mutations -- but what triggers them? Bad luck is a large part of the answer... live long enough, and it will happen, because once in every 10 billion cell divisions, there is an uncorrected error in the way DNA replicates, and IF that error means the cell divides more often, it could lead to cancer. (Not all mistakes do!) On top of that, some of us have something that makes us susceptible to these changes in our breast tissue -- that's the family history bit, with or without BRCA. If it's BRCA, we know what the error is -- for the rest of us, we don't. Environmental exposures don't help -- irraidating the thyroid, for instance. Etc ... we all know these contributing factors!

The theoretical argument for  mastectomy when there is widespread DCIS is that it means there are many many cells only 1-2 mistakes away from becoming invasive cancer cells - the odds are awfully high that one of them will get there! But if there's only 1 focus, the odds are much better that the surgeon can get it all, and that it was the result of a one-time error, not of a more general susceptibility. So in my case, i had 1 site with 4-5 mm IDC, and a separate site with 1 cm of DCIS but no IDC. One opinion was -- multifocal, have a mastectomy.  I didn't then, but a year later a  digital mammo showed 7 cm of suspicious calcs ... i figured there was too much going on in that breast, and did have the mastectomy. It was all ADH and DH -- those cells had not gone all the way. And maybe the rads had stopped them; maybe they would not have progressed to DCIS ... maybe. But i figured, with that many abnormal cells, one of them was all too likely to go all the way!

However, it's not true that the IDC started earlier than the DCIS, and the DCIS earlier than the ADH. For all anyone can tell, the ADH was there for decades, and the IDC cells just happened to  go more quickly from normal to actual cancer...hard to say. We don't really know why some cells progress faster than others through the changes. (Altho we *do* know how to tell if a cluster of cells is moving along -- that's the 'aggressive' part of the path report: how many mitoses, how abnormal the cells look, etc.)

i hope this is not too confusing!

Hi Catherine --

Letrozole (Femara) is an aromatase inhibitor (AI). It is and isn't like tamoxifen --  both are anti-estrogenic in the breast, but tamoxifen acts like an estrogen on the uterus. (That's why they watch the uterus very carefully if you're on tamoxifen.) And the AIs don't protect bone, so osteoporosis is a real risk. 

Perhaps most important, AIs don't prevent the estrogen in your body from working, as tamox does (because it sits on the estrogen receptor  and keeps the estrogen from getting there). Instead, AIs prevent cells outside the ovary from *making* estrogen -- so they only work in post-menopausal women. (The ovaries make estrogen by a different pathway, which is not affected by AIs.) But if you're past menopause and on AIs your whole body is estrogen-deprived. If not, the estrogen from the ovary swamps the other effects, and the AIs do no good...

AIs have different side effects than tamox -- bone loss, more probability of joint pain, but probably less likelihood of a stroke, and no increased risk of uterine cancer.

I don't know if tamox also fuzzes the brain, but letrozole did fuzz my brain - which is  why i quit.... i *think* my brain is working better, but sometimes i wonder.

CrunchyPoodleMama, I'm with you, wondering how I had such a large area without it becoming invasive.  The tumour was over 10cm (7cm then a further 3+cm) but with no microinvasion...???!

In my case, I first noticed the lump when I was 7 mths pregnant.  I was reassured after only an ultrasound that it was just "normal" lumpy breast tissue.  With the benefit of hindsight it was probably already a tumour at that stage. After breastfeeding for 16 mths, the lump only became apparent after I weaned.   

It was diagnosed after I had a PET scan (for lymphoma), my BS commented just last week how extremely high grade it was, it was galloping along, normally DCIS does not flag on a PET scan...so for me, a case of caught literally just in the nick of time!!!

Hi Catherine --

 Sorry for the slow response -- i'm not on here too often, and apparently didn't check this thread when i was.

With DCIS - i can't say. Can you talk to your onc about recurrence risk with/without tamoxifen? That should give you an idea of what the risk reduction is. Once you find out the risk - for your age, your history - you can decide if you want to try it.  Age matters here - i'm mid-60s, and i find the stroke risk too high; it's less for younger women. But since you're premenopausal without a uterus -- why not try it?

My sister had DCIS in all 4 quadrants: mastectomy 20 yrs ago come October, no further treatment (i don't think anyone even suggested tamoxifen to her!) and she's been fine. But Lisa's story points out that there are no guarantees ... that's why none of us can tell you what to do; you have to decide for you. My decision might be different if my sister had had another bc. Or if my aunt had died of her IDC.... Or if my onc hadn't been comfortable with my going off the AI...

All the best whatever you decide!

@ nolookingback hey did your onc recommend chemotherapy?

Survivorpagets, nolookingback hasn't been on the board since December 2011.  But reviewing her posts, no, she never had chemo. That would be consistent with having no invasive cancer. Personally I had over 7cm of high grade DCIS with comedonecrosis and a microinvasion of IDC, and I didn't have chemo. It never even came up. After my MX, my oncologist even recommended against Tamoxifen for me, although the risks vs. benefits were borderline so he would have prescribed it if I'd wanted to take it. But after doing a lot of research about it, I ended up agreeing with him.

Generally the size of the area of DCIS is relevant from two standpoints. The first is the surgical approach. Those of us who have large areas of DCIS or more than one area of DCIS usually require a mastectomy.  Some who are large-breasted might still be able to get away with having a lumpectomy but as a rule, multi-centric or large areas of DCIS need mastectomies. The second is the risk of finding invasive cancer in with the DCIS. The larger the area of DCIS, and the more aggressive the DCIS (grade and the presence of comedonecrosis), the greater the risk that some invasive cancer will be found. On average someone who has DCIS that was discovered by a needle biopsy faces about a 20% risk that some invasive cancer (usually just a microinvasion) will be found once the entire area of DCIS is removed an analysed. However I recall reading a study somewhere that suggested that the risk of finding invasive cancer hidden in with the DCIS can be as high as 40% - 50% for those who have pathologies like mine, with lots of high grade DCIS. I've also seen studies that have shown that for those who have small amounts of grade 1 DCIS, the risk is virtually zero. So the size of the area of DCIS does make a difference in this regard.

Annette, your situation is unusual but not unknown to happen. I don't see why there would be any debate about calling it a microinvasion, if the amount of IDC is 1mm or smaller in size. That's the definition of a microinvasion; there's no rule about how much DCIS needs to be associated with the IDC in order for it to be called a microinvasion. It's just the size of the IDC that determines that. And microinvasions are considered IDC - that's why those of us who have microinvasions are Stage I and not Stage 0. 

For me the biggest mystery is why some DCIS converts almost immediately to become IDC and develops from that point on as IDC, while other DCIS develops and spreads as DCIS but eventually a small amount breaks through the duct and becomes IDC. I've read that approx. 90% of IDC starts as DCIS. So in most cases of IDC, some amount of DCIS is also found. Most often however it's just a very small amount of DCIS, mixed in with a much larger amount of IDC. In these cases it would appear that the conversion from DCIS to IDC happened very early on, and at that point the DCIS stopped developing and only the IDC cells continued to multiply and spread. Annette, perhaps that's what would have happened in your case if your cancer had not been caught when it was. And then there are cases like mine, where a very aggressive DCIS multiplies and spreads throughout the ductal system of the breast, and at some point in one area a small amount of the DCIS breaks through the duct wall and becomes IDC. Was my microinvasion a late development; was it relatively new and would it have continued to multiply and spread if not removed? Or had it been there was a while but the growth of the cancer remained within the DCIS and not the IDC? I wish that someone would figure this one out!

My sis just had follow up appt with surgeon after bilateral mastectomy. result is multiple invasive cancer less than 1cm on both breast.

But have DCIS 14cm. I can not believe so big. How can ultrasound not detect this. Its high grade. Anyone can tell me big DCIS is what???