DCIS just diagnosed. Where to start?

tsoebbin

I've been lurking for a couple weeks as I went through the stages from abnormal mammogram to this afternoon when I was given my pathology report diagnosis of DCIS.

First. THANK YOU to you all for the information on this site. It's kept me sane as I waited for results. So very helpful and I'll forever be grateful. I'm still in shock but feeling positive.

Here is what I know so far.

2 tumors. Both DCIS. One is 5mm and the other is 8mm. They are hormone receptive? They are solid and cri rigors type. Negative for invasive carcinoma.

I have a couple questions:

I need to pick a breast center... How the heck do we do that? They all look good to me.

What does intermediate grade with central necrosis mean?

Thanks to you all for any support. I appreciate it.

BarredOwl

Hi tsoebbin:

As you probably know from your reading, DCIS is a form of non-invasive cancer and has a favorable prognosis.

Grade can be low (Grade1), intermediate (Grade 2), or high (Grade 3) and the higher the grade, the more different the cells look from normal cells. "Central necrosis" means that some of the DCIS cells in the center of the duct have died.

On this site, I found this page with illustrations to be helpful for understanding DCIS, which is confined to the inside of the ducts and is by definition "non-invasive" (has not broken through the wall of the duct into the surrounding breast tissue). Also, there is an explanation of "Grades" and terms such as "cribiform" and "solid", which describe the degree to which the duct is being filled up by DCIS. Read and scroll all the way to the bottom to find pictures:

http://www.breastcancer.org/symptoms/types/dcis/di...

Hormone receptors are estrogen receptor ("ER") and progesterone receptor ("PR"). Here is a short introduction:

http://www.breastcancer.org/symptoms/diagnosis/hor...

Be sure to obtain a copy of your complete pathology report (and any addenda or supplements). You can download and print the .pdf pamphlet "Your Guide to the Breast Cancer Pathology Report" at the bottom of this page, which may be helpful:

http://www.breastcancer.org/symptoms/diagnosis/get...

Please note that the pamphlet is very comprehensive, and not all tests are appropriate for all conditions. For example, with a biopsy, estrogen receptor ("ER") and progesterone receptor ("PR") status should be assessed for ductal carcinoma in situ ("DCIS"), but HER2 status is not routinely assessed. Also, some tests are often done later (if indicated) after full surgical pathology is available (e.g., OncotypeDX).

Many new members find these comprehensive posts from Beesie to be extremely helpful. You may wish to bookmark them and read them over and over as you move forward, because it is a large amount of information to absorb.

A layperson's guide to DCIS (scroll up to the original post):

https://community.breastcancer.org/forum/68/topic/...

Lumpectomy vs Mastectomy Considerations (see Jun 20, 2013 post from Beesie

https://community.breastcancer.org/forum/91/topics/806452?page=1#post_3598134

It would be best to look for a comprehensive breast cancer center and a "breast surgeon" whose practice focuses on the diagnosis and treatment of patients with or at risk for breast cancer as essentially all of their practice. For example, if you are reasonably near an NCI-designated cancer center, that is a great option. You may need to travel a bit farther, but it is worthwhile to tap into that expertise.

http://www.cancer.gov/research/nci-role/cancer-cen...

Others have recommended NCCN-member institutions:

http://www.nccn.org/members/network.aspx

You will find a lot of information and support here, and things will get better the more you learn about your diagnosis and treatment plan.

BarredOwl

tsoebbin

Thank you for these links. I read the laypersons guide several times today and I think i learned something new each time i read it. I decided to email it to myself to read again in the morning!

It is very helpful to read posts from those that have been through this before. My next focus is nutrition and getting as healthy as possible before any treatment. I will check this site for suggestions on that topic.

Thanks for your response. I appreciate it.

Gulfwater

Not all DCIS diagnoses are the same. But DCIS is certainly not invasive or infiltrating breast cancer. Thirteen years ago I was diagnosed with DCIS -- a single largish 2 cm tumor. Knowledge is power was not my thing. I just wanted to know the basics. I'm in the Chicago suburbs. I didn't go to a breast center. I went to the good local clinic and hospital -- not into the city to a big Chicago hospital. Had a lumpectomy. My surgeon got clean margins the first go. Standard app. 33 radiation treatments with which I had next to no problems. Five years of tamoxifen. Virtually no problems with that. What is a help to me and I believe in is PMA -- a positive mental attitude. I went to a couple support group meetings. The nurse leading the group said I would be fine. I remember one member told me horror stories about radiation. That was her experience, not mine. After a while when anyone would start telling me negative breast cancer stories, I would stop them cold. I did not need to hear it. All these years later, I am fine.

tsoebbin

I have a surgeon appointment on the 22nd and I am ready for whatever comes next. With two lesions and "intermediate grade with central necrosis" I am guessing a mastectomy could be suggested vs. lumpectomy and radiation. I am OK either way. No need to try to guess ahead of time - I am just imagining both possibilities and trying to understand the recovery and risks of both.

I am still a bit confused about something else. If DCIS is non invasive, is that a temporary thing? From reading so many posts it seems like it changes if left alone? I think I am just not grasping the big picture here. I have read it is non invasive and then I read about micro-invasion - is that a different type of cancer?

It is still such a shock to me - I think my brain is a bit goofy right now!

Thanks for sharing your questions and stories. It is really helping me not feel so alone in this.

Annette47

DCIS is non-invasive at the time it is found. Some DCIS will mostly likely never become invasive in the person’s lifetime. Some will eventually develop the ability to spread outside the ducts. The problem is that there is no way to determine which DCIS will spread and which will not, so it all needs to be treated. We know some generalities like higher grade, larger areas of DCIS with comedo necrosis are more likely to become invasive than smaller areas of lower grade DCIS, but those are trends, not absolute guarantees. I have known of women with 10 cm of grade 3 DCIS with comedo necrosis who had no invasive cancer, and yet I had a tiny (the size of a grain of rice) area of intermediate grade DCIS that had already begun to break out of the duct, so you just never know until it has been removed.

Micro-invasion (which is what I had) means that the DCIS has just barely begun to spread, so it is invasive in that it is no longer contained to the ducts, but is micro, meaning that it is still very, very small. The reason this matters is that if it is caught at such an early stage, even though it is invasive, it is much less likely to have spread to other parts of the body than if it wasn’t caught until it was already larger. Having a micro-invasion in most cases does not significantly change your treatment from having pure DCIS. A larger area of invasive cancer though might warrant more aggressive treatment such as chemo to address the chance it has begun to spread outside the breast.

Hope this helps!

LisaAlissa

hi tsoebbin,

The "goofy brain" reaction is perfectly understandable. If you haven't read the posts from Beesie that BarredOwl linked you to ("Layperson's Guide to DCIS" and "Lumpectomy vs. Mastectomy Considerations"), I'd encourage you to read through them. Very, very helpful. Beesie has been one of the best researchers/writer's on the site. Those posts contain a wonderful synthesis of information.

And best of all, they don't tell you what to do, just lay out the information, choices and things you will want to consider.

At any rate, take a look and tell us what you think.

LisaAlissa

BarredOwl

hi tsoebbin:

Because minimally-invasive biopsies sample only a small area, they cannot exclude the possibility that some invasive disease is present. The question of whether a person has pure DCIS (Stage 0) or also has some invasive disease is determined from the surgical pathology.

The identification of any invasion in the surgical pathologywould mean that the diagnosis is no longer Stage 0, even if it is a node-negative micro-invasion (size-wise T1mi):

T1mi Tumor ≤ 1 mm in greatest dimension

Node-negative (N0), T1 (including T1mi) disease, (M0) is considered Stage IA (T1 N0 M0).

According to ASCO, in women diagnosed with apparently pure DCIS by minimally invasive biopsy, invasive cancer is reported in 10% to 20% of cases overall, approximately half of which are limited to microinvasive cancer.

BarredOwl