DCIS - No surgery?

Bravo Beesie,

I love your well thought out statements, backed up by current research and lack of judgement or use of inflammatory language. We are so different as are the individual components that play into our decision making process. I also think that most of us try to consider all the pros and cons when choosing tx, however my pros and cons may not be someone else's and that sometimes get lost. We do tend to see the world through the lens of our own experiences and it is sometimes hard to remember how highly individual those lenses are.

Caryn

When I got my stereotatic biopsy results, there was a long list of possible "stuff", including DCIS.

I read up on all of the controversies. I booked an appointment at a hospital where I knew there was an expert on rethinking DCIS. When I got there, the surgeon said, "Go back to the original hospital. Do the lumpectomy. You are way too young to take risks like this."

 My lumpectomy revealed grade 3 DCIS with comedo necrosis. I knew then that I wanted WAY better margins, radiation, and the information it would take to make a tamoxifen decision.

 I went from resisting treatment to wanting to address the problem as aggressively as possible. All on the basis of the pathology I got from my lumpectomy.  BTW, my lumpectomy was a trivial bit of surgery.

I have been to Cancer Land. I never want to visit again.

losing_sleep:

I will never tire of saying this - there is no one-size-fits-all solution.

ME: If my lump had been a mere fibroadenoma, I STILL would have had it surgically removed. I happen to do well in surgery, I am not afraid of surgery, my views about cancer are old-fashioned (get the damned thing out - and anything that could even vaguely resemble it). But it seems that lots of people are terrified of surgery - so much so that they are willing to go to some length to either try different plans of attack or avoid treatment. For those people, watching/waiting may be more tolerable than undergoing a procedure. I do also think we need to embrace more sophisticated views of cancer treatment, as BC is so obviously a variety of different conditions and not just one. That said, I would personally ask any doctor to please yank any DCIS out of me yesterday - but that doesn't mean my DCIS has to be yanked out if I have it.

I welcome a greater sophistication and nuance in cancer treatment. My personal concern remains with the fact that our scanning technology is still far from perfect, making active surveillance a delicate proposition. The option of exploratory surgery should be discussed with women who have serious concerns about disfigurement and who may have DCIS alone.

It's a new world we have to adapt to. The trick is to be able to accommodate new scientific knowledge without applying it in cases where it may not properly fit.

NSJ2 - Thank you - I am doing well!  I have had exchange surgery and just celebrated still NED-ness on the second anniversary of my diagnosis, 9/27!

Hi Oktogo9-

I haven't read all of the responses but thought that I would tell you what happened to me.

I have no family history. I had no lump. I had yearly mammograms, faithfully. They found high grade DCIS from a mammogram. The diagnosis was that it was in 3 places on my breast and mastectomy was my only option. I listened to the docs. I was fear mongered. I had the mastectomy. I suffered depression. Kept having mammograms of remaining breast. 4 years later, stage 1, grade 3 found in other breast. Had mastectomy so that I would be done with this. Suffered severe depression. I have major regrets that I ever had a mammogram. I would not wish this horrible depression on anyone. It has affected every bit of my being. I doubt the doctors. I am bitter and jaded. I used to be a positive person. I haven't met anyone that feels the way I do. If I had felt a lump, I think I would feel different but my disease was on mammogram film. I am not convienced to this day that BC would have killed me but I listened to the surgeon. And how does a surgeon make money? By doing surgery! My stress from this has aged me 10 years or more. It was not worth it. Just my 2 cents. Wish I had never had the mammogram. My life was better before this happened to me. This is my true feeling and I don't really want to hear about how lucky I was to have caught it early. It just wasn't the right choice for me. I'm weird I guess. 

oktogo9,

There is a lot of concern about overtreatment of DCIS.  There are a number of clinical trials going on right now that are studying this.   You might want to take a look and see if you are a candidate for one of these. 

There are lots of trade offs when picking a treatment plan and those trade offs are differnet for each of us. My oncologist is fond saying that everyone is different and there are no guarntees.  Find out as much as you can and choose the path that best suits you.

You mentioned a friend with prostrate cancer as an example  where there are less invasive treament options available than what was originally proposed. It gave me a twinge thinking of friend of mine who made a similiar decision over  a decade ago.  He had the nuclear seed treatment and was NED for ten years.  Then it was discovered that that the prostrate cancer had metasized.  It was resistent to hormonal and the three chemos available.  He passed last year.  At one of the second opinions he was told that it might not have happened  if  he had the surgical treatment.  Another case of everyone being different and there are no guarantees.

I wish you good health with your choice.

[edited for typo] 

NSJ2 - Interesting question. I had two masses. The IDC mass was a palpable lump on diagnosis (I have very dense breasts so it hadn't been picked up by mammograms). The second malignant mass wasn't found at all until I had an MRI just before surgery, and it wasn't diagnosed as DCIS until after surgery. I don't know the grade of the DCIS ... I assume it wasn't relevant since my dx was node-positive invasive cancer. I've always assumed the IDC mass had been developing for some time and the DCIS mass was a new cancer caught earlier because of the MRI, but who knows? Maybe my assumption on which came first is wrong.

NSJ2,

The situation you raise is well understood and it is certainly factored into the discussions about the status of DCIS.  

Your friend's situation happens all the time. It's very common to find DCIS in or around IDC. This is because it's estimated that approx. 80% to 90% of IDC develops from DCIS.  But that doesn't mean that all DCIS develops into IDC. It's not known what percent of high grade DCIS eventually becomes IDC, because most women with high grade DCIS have it removed. Some experts believe that about 50% of high grade DCIS evolves to become invasive while other experts feel that it may be closer to 100%.

There have however been studies done on women who have not had surgery on small amounts (usually less than 1cm) of low grade DCIS.  BLinthedesert posted in this thread the information on one of the those studies, which showed that 30% of low grade DCIS lesions developed into invasive cancer within 15 years.  So that puts the risk to be right at the higher end of the risk for ADH. 

For someone dealing with DCIS, it's very important to understand that a diagnosis that is largely IDC with a little bit of DCIS is quite different from a diagnosis that is completely DCIS or largely DCIS with a little bit of IDC.  Let me copy and paste (and slightly edit) something that I wrote a couple of days ago in another thread:

In the development of ductal carcinoma, in most cases the cancer cells start off confined to the milk ducts; this is DCIS. These cancer cells are almost fully developed; they look and act like cancer cells but they lack the ability to break through the wall of the milk duct.  They cannot invade or metastasize.  However at some point these cells may undergo one final biological change that gives them the ability to break through the milk duct and thrive in open breast tissue. At that point, the cancer cell that used to DCIS is now IDC. It's the same cell, but it's evolved and has broken through the milk duct.

Because this is the most common way that IDC develops, most cases of IDC are found to include a DCIS component.  But there are many variations on how this can be exhibited:

• Sometimes someone will be found to have a mass that is 99% IDC but only 1% DCIS. This is actually considered to be "pure IDC".  Studies suggest that this happens about 25% - 40% of the time.
• Other times there is more DCIS, maybe about 30% of the tumor, but still the majority of the tumor (70% in this example) is IDC.
• Then there are situations that are the opposite of this, where a small but still signficant percentage of the tumor is IDC (let's say 20% - 30%) but the majority of the tumor (70% to 80%) is DCIS.
• Then there are cases like mine, where the tumor is only about 1% IDC and 99% DCIS.  
• And finally you have the cases that are pure DCIS; sometimes there is a very large amount of DCIS spread through the breast but there is no IDC. Other times there is just a small amount of DCIS and nothing more. 

.

Why DCIS progresses to IDC all these different ways, or not at all, is the big mystery.  

- Why do some ductal carcinomas convert almost immediately from DCIS to IDC and then develop only as IDC?

- Why do others develop both as IDC and DCIS?

- Why do some develop mostly as DCIS and then eventually break through the duct?

- Why do some develop only as DCIS and stop there?

I don't believe that there is any understanding yet on why the DCIS-to-IDC evolution of cancer differs so much from one case to the next.  In all likelihood the biology of the originating DCIS is completely different in a case where the DCIS immediately converts to IDC and then develops as IDC, vs. a case where the DCIS develops mostly or only as DCIS. There is a lot of work underway to try to understand this.  There is already some work that indicates that IDC alone (1% or less or no DCIS) is more aggressive than when IDC is found together with DCIS, and the greater the percentage of DCIS found in a combined DCIS/IDC tumor, the less aggressive the cancer. DCIS-IDC less aggressive than IDC alone 

So it's very important to not presume that because DCIS is found with most cases of IDC, that therefore most cases of DCIS may also contain IDC or will develop shortly into IDC. The biology of these cancers are likely completely different. The fact is that 80% of needle biopsy diagnoses of DCIS turn out to be pure DCIS, with no invasive component. Most often when invasive cancer is found, it's associated with large areas of high grade DCIS.  Studies of low grade DCIS show that most of the time, it is pure DCIS and as much as 70% may not evolve to become IDC even after 15 years. 

That doesn't mean that it shouldn't be removed... although that is the question that's now being asked within the medical community.  There are clinical trials underway to see if low grade DCIS can be left in the breast and effectively monitored.  

Here's a question that I think may have already been answered, but here goes: I didn't find out until my mastectomy that I had many different types of cancer in my breast - IDC, ILC, DCIS, and LCIS. My initial biopsy only showed "Invasive carcinoma with both ductal and lobular features." If the biopsy spots had been taken from the tumor areas that had DCIS or LCIS, wouldn't my biopsy pathology have shown "just" that diagnosis? I had such a large area of cancerous tissue - even after the palpable tumor was shrunk considerably after neoadjuvent chemo - that it makes me truly wonder. 6cm is a very large area, and is there really any way of knowing it is "all" DCIS without a lumpectomy? I think this may have been answered already, but just want to make sure I understand.

OP, for what it's worth, I know it's not the question you were asking, but I initially wanted to take the conservative route too. I freaked out when the first surgeon I saw wanted to do a mastectomy the week after my diagnosis, and I went for a second, and then a third opinion. I got a lumpectomy that failed to achieve clean margins before my mastectomy. Not everyone goes for agressive treatment from the get go, but knowing what I do now, I'm sorry I had to have false hopes and a lumpectomy surgery before getting my MX. I wish you the best of luck with whatever course of treatment - or lack thereof - you decide is right for you.

I have a question. What are the percentages of diagnosises at the different stage levels? Seems to me, when I hear of breast cancer most of it is Stage 1 or above? If not stage 0 at time of DX, why not? Why is BC missed so much and allowed to progress? OR, does it grow that fast in some of us? I feel blessed to have caught it at stage 0. Thoughts???

NSJ2, this is a just a small study of 122 women, but in this study 13% of the women who had DCIS from a biopsy ended up with a final diagnosis that included a microinvasion or more IDC. None of the women found to have invasive cancer had grade 1 DCIS. Histologic and Radiographic Analysis of Ductal Carcinoma In Situ Diagnosed Using Stereotactic Incisional Core Breast Biopsy  I'll see what else I can find.

Kd6blk, in 2011, it was estimated that 57,650 women in the U.S. were diagnosed with DCIS and 230,480 women were diagnosed with invasive cancer.  So of the 288,130 women, 20% were diagnosed at Stage 0 with DCIS.  Of those diagnosed with invasive cancer, 60% had localized cancer (i.e. confined to the breast, so either Stage I if the tumor was 2cm or less in size, or Stage II if the tumor was larger than 2cm), 33% had regionalized cancer (i.e. spread to the lymph nodes and therefore either Stage II or Stage III) and 5% had mets (Stage IV).  2% were unstaged.  Sources: SEER Stat Fact Sheets: Breast  and  DCIS  and  Breast Cancer Staging

To your question, "Why is BC missed so much and allowed to progress? OR, does it grow that fast in some of us?" there are lots of reasons why all breast cancer is not caught as DCIS.  Among the reasons: - Many women do not get regular screenings;   - Sometimes cancer is detected at a woman's first screening and it may already be beyond Stage 0 by that time;  - None of the screening tools currently available are perfect and catch all breast cancers;  - Breast cancer (like everything else) starts off as just a single cell and it may be years before it is large enough to be detected by any currently available screening method; - Some breast cancers start off as IDC;    - Other breast cancers progress from DCIS to IDC almost immediately, well before the cancer is large enough to be detected. 

Bluecowgirl, if your needle biopsy had just hit on a spot where there was DCIS or LCIS, then you would have been one of the 20% whose diagnosis changed from pre-invasive to invasive once surgery is done. So while your preliminary diagnosis (called your "clinical staging") would have been Stage 0 DCIS or LCIS, your final diagnosis (called your "pathological staging") would have been the same it is now, invasive cancer Stage IIIA. With a large area of suspicion, usually quite a few core needle samples will be taken during the biopsy, and hopefully the samples are taken from different areas of the mass. This is why 80% of biopsies turn out to be correct.  More often than not, when a preliminary diagnosis of DCIS is upgraded, the upgrade is only to DCIS-Mi (i.e. there's just a small 1mm microinvasion of IDC) or IDC Stage I, with a small T1a or T1b tumor. It's very unusual that a large area of IDC would be missed by a core needle biopsy. Not that it can't happen, of course, but only about 5% of women initially diagnosed with DCIS end up with a diagnosis that requires significant changes to the treatment plan, such as the addition of chemo or Herceptin. 

kayb, I still haven't had any luck finding the article that explained how IDC can develop outside the duct and therefore not start out as DCIS.  Still looking.  

Thank you Bessie. My cousin is an RN, had a mammo year before...then the next year she had stage 3...just seem lots of stuff gets missed during DX and ladies end up fighting for their lives. Thank you for sharing all the research. It is nice to learn along the way. 

Lisa 

Great data, Beesie. Thanks!

So wow, if I'm reading correctly, seems DCIS Grade 1 at biopsy can upgrade at surgery path (albeit larger than 2cm). For some reason I thought the "grade" didn't correlate to the size but to the cellular aggresiveness of the cancer.

NSJ, yes, low-grade DCIS can be upgraded to IDC after lumpectomy, though it is rare - except in larger sized tumors.  The paper that Beesie referenced had NO grade 1 DCIS that were upgraded after lumpectomy.  The reason the larger tumors may be upgraded has to do more with the inadequacy of the biopsy (assuming it was vacumn) - you can imagine trying to take a bunch of small samples from a large area, and just by chance you may miss the area that contains the IDC but get lots of sample of DCIS that is surrounding it.  This is much more likely to occur if the DCIS was diagnosed by palpable mass - and seen on ultrasound - than if it were originally caught on mammogram/MRI.

Blinthedesert, thank you!

NSJ2, yes, grade 1 DCIS can be upgraded to invasive when the surgery is done. When you were first diagnosed and you asked about this, I recall replying that on average 20% of DCIS diagnoses from a needle biopsy are found to include some invasive cancer at time of surgery. I explained that the 20% is an average; the risk is higher for those who have grade 3 and/or comedo-type DCIS and the risk is lower for those who have grade 1 DCIS. That's exactly what the studies that I posted show. The risk for grade 1 DCIS is lower than average, but there is some risk.  With breast cancer, nothing is impossible!  

You're right that the grade of the cancer reflects the aggressiveness of the cancer, not the size.  Grade and size are two separate and distinct pathology assessments. Someone can have a tiny area of grade 3 DCIS and someone else might have a large area of grade 1 DCIS. You can find every different combination of size and grade.

Individually and separately, both grade and size have been found to have an impact on both recurrence risk and the risk that some IDC may be present.  All other things being equal, the higher the grade, the greater the risk. All other things being equal, the larger the size, the greater the risk.

What this means is that someone who has a large area of grade 3 DCIS, as I did, is at the highest risk. It turns out that I did in fact have a microinvasion of IDC hidden in middle of those 7+cm of high grade, aggressive DCIS.  Not very surprising. 

Someone with a small area of grade 1 DCIS, as you have, is at the lowest risk. 

Those who have diagnoses that fall in between these two extremes - a small amount of grade 3 DCIS or a large amount of grade 1 DCIS or a large or small amount of grade 2 DCIS - fall somewhere in the middle in terms of risk.  

This explains why a large amount of grade 1 DCIS, as Oktogo9 has, is of more concern than a small amount of grade 1 DCIS.  The aggressiveness of the DCIS is the same - they are both grade 1 and therefore are not particularly aggressive - but the fact that there is a lot of it means that something else is going on. Maybe the DCIS has been there undetected for 15 years and this has given it the chance to progress. So in this example, with a large grade 1 tumor, it's the size that's the more concerning factor, not the grade.  

And then, to BLinthedesert's point, you have the fact with a small area of DCIS, the risk that the needle biopsy didn't capture an accurate or complete sample is likely to be very small.  But with a large area of DCIS (whether it's grade 1 or grade 3), even if needle biopsy samples were taken from several places, there is still a greater risk that something might have been missed.