Reluctant graduation to the DCIS board

momoschki · February 2011

So it seems I have progressed from "Undiagnosed and Worried" to "Diagnosed and (more) Worried.

Had a biopsy on Tuesday that revealed clustered calcifications which then turned out to be DCIS, left breast. I have just gotten hold of the pathology report and am trying to make some sense of it. Just got off the phone with the doctor who did the biopsy in hopes of her answering my questions, but I think once she got an idea of the number/depth of things I wanted to ask her, she was suddenly in a hurry and had to call me back. Ok, let's give her the benefit of the doubt... but still, perhaps some of you can shed light on the report.

The findings were classified as follows:

1. DCIS (EORTC intermediate to high grade,micropapillary adn cribriform types) associated with calcifications. Fibrocystic changes associated with focal calcifications.

2. Focal atypical duct hyperplasia associated with calcifications. Fibrocystic changes. Correlation with the specimen radiograph was performed.

Can anyone shed some light on the implications of the above (which were for a stereotactic biopsy, btw.) I did manage to get the doctor to tell me that the DCIS was graded somewhere between intermediate and high grade, but aren't there usually numbers associated with these assessments? (1-3, I think?) So would mine be somewhere between a 2and 3? There is no mention of how large the actual mass of DCIS was, but she seemed to suggest that this could not be determined until an excisional biopsy. There was also no mention of whether it was ER+/-, which I always had assumed was standard information.

Another question: is it wise to have another doctor look at the pathology report and/or slides, or is that overkill? I am trying to strike the right balance here between prudence on the one hand, and avoiding over-obsession on the other.

And am I correct that it is way to soon to predict any kind of treatment course and length of that course?

I have an appt. set up with one breast surgeon next week and am working on trying to get another with an apparent hotshot at NYU (I am lucky to be in NYC.) Had an appt this morning with a psychiatrist in efforts to try to feel a bit less unhinged going through this process, with some very welcome pharmaceutical intervention (so maybe I can sleep at night?)

Thanks to all in advance for knowledge, wisdom, encouragement, etc.

.

Eloise · February 2011

Hi momoschki, sorry we didn't meet under more pleasant circumstances. Let me tell you what I know as a relative newcomer, and I'm sure others will chime in soon.

The most important thing for you to know right now is that you have time -- time to research, talk to doctors (and get appointments with the doctors you want even if it takes a few weeks), talk to people you know, read as much as you want to read, get information here. You need to deal with this, but you don't need to deal with this on an emergency footing.

Yes, intermediate is grade 2 and high is grade 3, so you're somewhere in the middle, but the presence of any grade 3 is likely to make your doctors treat it as if it were all grade 3. On the other hand, micropapillary and cribriform are two of the types of DCIS that tend to be less aggressive. And if the pathologist didn't mentioning finding any necrosis, that's also a sign that this may be a less aggressive cancer.

The size of the tumor can't be determined until the excisional biopsy. The ER and PR status is usually determined from the first biopsy sample, but I think it usually takes longer to run those tests, so that part of the report might not be in your doc's hands yet. It might or might not be a lesser factor in thinking about what kind of surgery to have, but by the time you talk to your surgeons you should have that info. It is a factor in deciding whether to pursue hormonal therapy.

Ask your doc to fax or mail you a copy of the complete pathology report when she has it.

You were wise to get your psychiatrist on board -- a little chemical intervention to ensure more sleep and less worry is a good thing. Also, in my experience psychiatrists often have good connections with other MDs and might be helpful in suggesting who to consult next.

I asked exactly the same question as you about getting a second opinion on the initial path report, when I was diagnosed a few months ago. The answer is probably not, unless there was some circumstance that made you doubt that the pathologist knew the difference between DCIS and normal tissue. A second path opinion would be more useful after the excisional biopsy, if you weren't comfortable or confident about the treatment being suggested to you then. The exception to this, I suppose, would be if the surgeons you consulted were strongly suggesting a mastectomy based on the pathology, and you wanted to be sure that there wasn't an alternative that would let you have a lumpectomy. There is a consulting pathologist with great expertise in DCIS, Dr. Lagios, who you'll find plenty of references to if you do a search here. But you may also have options for second path opinions within your medical group or insurance plan.

It is too early to predict what's next, but not too early for you to start researching it when you're comfortable. It looks like you have a single area of DCIS, which might be referred to on the path report as "focal" as opposed to "multifocal". If that is the case, and if the area of the cancer is small relative to the size of your breast, you probably can have a lumpectomy if that's what you want. Unless there's some other complicating health factor, that's outpatient surgery. Total time away from work or your regular routine, if you really want or need to get back to it, could be less than a week. Treatment after that depends on the results of the pathology from that surgery, and also on what you want and what your tolerance for risk is. It could include either radiation or an anti- hormonal drug such as tamoxifen, or both, or neither. Chemotherapy is not done for DCIS because DCIS is non-invasive.

Well, that's about all I can think of because I have to run off to radiation now. We will all do what we can to help you find your way through this!

Edit: BTW, although my signature refers to my HER2 status, this test is usually not done for DCIS so don't be concerned when it doesn't show up on your report. I "auditioned" for a clinical trial and had the test because of that.

Beesie · February 2011

momoschki, welcome to the DCIS board! Not where you want to be, I know!

The info that you have from your pathology report at this point is really pretty basic. It says that your DCIS is intermediate to high grade, which means Grades 2 - 3. Two subtypes of DCIS have been found, micropapillary and cribiform. And you have ADH in addition to the DCIS. Nothing unusual in there. It's quite common to have DCIS that includes several different subtypes and more than one grade. And DCIS and ADH are usually found together. Your breast tissue also shows fibrocystic changes, which again is very common. About 60% of women have fibrocystic breasts so some fibrocystic conditions are bound to show up for most of us. I had a whole bunch.

Usually the ER and PR status is provided from the biopsy report however if the core needle samples were too small, they may have left this testing until your surgery.

A biopsy can't provide information about the size of the area of cancer but usually surgeons will estimate the size based on what's seen on the mammogram, ultrasound and/or MRI films. Still, until the surgery is done and all the cancer is removed, it's not possible to know for sure what the final size of the area of cancer is.

As for treatment, if it turns out that you have pure DCIS, then the treatment options are pretty simple. Of course you need to talk to your surgeon and an oncologist about this, but here's a quick idea of what's ahead:

First is surgery, either a lumpectomy or a mastectomy. If the area of cancer is relatively small, then either surgery will be feasible and it will be your choice. If the area of cancer is large, then a mastectomy might be recommended. The objective of surgery is to remove the whole area of cancer, with an acceptable margin on all sides. The 'margin' is the area at the edge of the removed breast tissue; the idea is that your surgeon will want at least 2mm (and ideally more) of clear cancer free breast tissue on all sides. This provides the best indication that all the cancer has in fact been removed. A sentinel node biopsy may or may not be done when you have the surgery. This is something to discuss with the surgeon - there are pros and cons and in the end it's your decision on whether or not to have the SNB (assuming that no invasive cancer is found; if invasive cancer is found than an SNB must be done).

Next is radiation. If you have a lumpectomy, in most cases radiation will be recommended. Some women who have small isolated areas of DCIS and who have wide margins after surgery opt to pass on radiation but most women who have lumpectomies do have the radiation. If you have a mastectomy, radiation is unlikely to be required although if the margins are too close, radiation might be recommended.

Last is hormone therapy, i.e. Tamoxifen. Tamoxifen is likely to be recommended if you have a lumpectomy and your DCIS is ER+. It might also be recommended if you have a single mastectomy. Taking Tamoxifen is your choice - there are pros and cons.

With pure DCIS, that's it. The one thing to keep in mind, however, is that at this point your diagnosis is preliminary. While most of the time a preliminary diagnosis of DCIS after a needle biopsy does result in a final diagnosis of DCIS, in about 20% of cases something more is found. This could be just a microinvasion of IDC (that's what I have), which wouldn't change the treatment plan at all, or it could be more invasive cancer - and that would put other treatment options on the table.

Here are the NCCN Clinical Practice Guidelines in Oncology, Breast Cancer. This is the physicians guide, which has more detailed info than the patient's guide, but you do have to register (it's free though). DCIS treatment is discussed on pages 8 - 10 and then again on pages 68 - 71. Or if you don't want to register, here is a link to the NCCN Patient's Guide, Breast Cancer.

Lastly, if it were me, I would wait for the next surgery before getting a second opinion on the pathology. Pathology is an art as much as a science and after surgery there might be questions as to how clear the margins are or whether any microinvasions are present. Having a 2nd look at the pathology then might be more useful than it would be now.

Reluctant graduation to the DCIS board

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