Just Diagnosed and my head is spinning.

Hi Michiganmom89:

I felt a lot better once I met with the breast surgeon, and had a better idea of what I was dealing with. I hope you will have the same experience.

On this site, I found this page with illustrations to be helpful for understanding ductal carcinoma in situ ("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). This page also includes some information about grade, and farther down, there are explanations and illustrations of the terms used to describe the architecture or how "clogged" the duct appears (e.g., solid, cribiform).

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

In the US, DCIS is commonly tested for estrogen receptor ("ER") status and progesterone receptor ("PR") status. Here is a short introduction from the main site:

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

If you have only received a top-line summary of the pathology report, be sure to obtain a copy of the complete report (and any addenda or supplements, including results of ER and PR testing).

The majority of patients diagnosed with DCIS elect to treat it with surgery at a minimum, in accordance with current consensus guidelines for treatment of breast cancer. In general, the options are:

(a) Lumpectomy (without sentinel node biopsy), with or without radiation

- Entails surgical excision;

- May entail possible re-excision(s) to obtain adequate surgical margins;

- If disease is very extensive, may lead to mastectomy;

(b) Mastectomy (with sentinel node biopsy), most commonly without radiation

- Many patients with DCIS can be treated by mastectomy alone, and this is one factor behind this choice. In limited cases, findings from the surgical pathology or sentinel node biopsy may lead to the recommendation of radiation.

Initial surgical options are affected by a variety of factors, such as the extent of biopsy-proven disease relative to the size of the breast, as well as imaging results, and genetic testing results (if applicable).

As ElaineTherese notes, pathologic staging is finalized after the pathology from all surgeries and biopsies is available. Following surgery, sometimes an area of invasive disease (e.g., invasive ductal carcinoma (IDC)) is found. According to the American Society of Clinical Oncologists (ASCO), in women diagnosed with apparently pure DCIS by minimally invasive biopsy (e.g., stereotactic core-needle biopsy), invasive cancer is reported in 10% to 20% of cases overall, approximately half of which are limited to microinvasive cancer (microinvasive or T1mi: Tumor ≤ 1 mm in greatest dimension).

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

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

https://community.breastcancer.org/forum/68/topics/790992?page=1

Lumpectomy vs Mastectomy Considerations (see Jun 14, 2013 post from Beesie

https://community.breastcancer.org/forum/68/topics/806074?page=1#post_3589278

You will find a lot of information and support here.

Best,

BarredOwl

Good luck to you! I remember getting "the phone call" all too well. I had an MRI before my BMX. Had a PET scan after BMX as they found a lesion on my liver by accident. I know all of this causes anxiety, stress and sometimes depression. Hang in there! The worst part for me was waiting for test results, seems like I was always waiting, and your mind starts messing with you about all the what if's! Please keep us updated.

Some doctors will do an MRI of the breast prior to deciding on treatment (to see if there are any other areas of concern), mine did not. Apparently my breasts are not unusually dense and she felt the mammogram gave a good enough picture.

Unless/until invasive cancer is found, and even then not in all cases it would be very unusual to do a CT or Pet scan (even so, if the area is small and lymph nodes are clear, they may opt not to do those scans). Lymph nodes will either be checked during surgery if you choose a mastectomy or in a separate procedure if invasive cancer is found during a lumpectomy. If the diagnosis remains pure DCIS there is no need to check them.

Hate to say it, but mastectomy (bilateral or unilateral) doesn’t mean you won’t need hormonal (more correctly, endocrine) therapy like tamoxifen or an aromatase inhibitor. That would be determined by whether your surgical path report said your tumor was positive or negative for estrogen & progesterone receptors. If negative, you wouldn’t get endocrine therapy—regardless of whether you remove both breasts, just the DCIS one, or even just a lumpectomy. If one breast had an estrogen-positive tumor, you would be recommended endocrine treatment whether or not you left the other breast in place.

My BFF had widespread DCIS in one breast, and some anomaly showed up on an MRI of her other. She was nearly flat-chested, and at 70 saw no need to preserve either breast, nor to go through radiation in order to preserve one. So she opted for BMX (“double mastectomy”) without reconstruction. Her “healthy” breast had atypical ductal hyperplasia—benign but a risk factor. Her DCIS was found to be estrogen-negative (more common in DCIS than in invasive cancers), so no endocrine therapy. And no chemo, either, because by definition DCIS is non-invasive (doesn’t spread) and there would be no cancer cells anywhere else in the body to need to kill.

I write with respect to those receiving bilateral mastectomy, found upon completion of surgical pathology to have pure DCIS (i.e., Stage 0 disease (either Stage 0 disease in both breasts, or Stage 0 disease on one side and no disease on the other), that is hormone receptor-positive.

Patients with higher baseline risk can reap greater absolute benefit from endocrine therapy than those with lower baseline risk, yet both groups face the same incidence of severe adverse side effects.

When the risks of recurrent and new disease are sufficiently low (as may often be the case in the setting of DCIS treated by bilateral mastectomy), endocrine therapy may not be recommended to such patients. This is because the risks of severe adverse side effects of such treatment may not be seen as sufficiently outweighed by the comparatively limited benefits.

As with all such questions, there are specific cases in which endocrine therapy may be considered or recommended, and the patient must make a decision in light of their personal risk tolerance.

"In the end, the question surrounding the use of any type of endocrine therapy in DCIS is "How much benefit is necessary to justify treatment?"

Thus, patients receiving bilateral mastectomy found to have pure DCIS that is hormone receptor-positive should not hesitate to seek a consultation with a medical oncologist to obtain a personalized risk/benefit analysis, and active consideration of this question (in light of all applicable considerations) by a professional with the relevant expertise.

BarredOwl