Mom has DCIS, minor IDC, ER-/PR-/HER2+ - I'm scared

Good morning everyone:

Last night, I stayed up all night reading and re-reading my mom's pathology reports from the day she was diagnosed -- I included everything from the initial mammograms, sonograms, biopsies, all the way up to the mastectomy report. I'm trying to be as pro-active as possible in finding as much information possible, researching information, hearing other women's experiences, etc. My mom is already going through a lot with the stress of determining as to whether or not she wants to do the chemo. My mom lives in Miami and I live in New York. I work at a hospital that has been wonderful in interpreting my mom's reports for me including looking at her pathology slides which I had asked to be FedEx'd to my hospital. We have a great cancer center with great doctors and I'm lucky I'm able to have that resource. As much as I would have wanted to fly my mom out to New York to be treated by our doctors, she has a health plan through the Affordable Care Act which she obtained through the State of Florida so she's only able to treat herself in Florida. But, I've also researched the hospital she's being treated at, their cancer center, the doctors, accreditations, and without naming names, they seem to be a strong and reputable hospital. It makes me feel good that all of the procedures, pathology, etc all coincides with what I'm being told here on my end. This oncology stuff however, just surfaced over the last two days since Mom just saw the oncologist for the first time since her surgery. When I return to work on Tuesday I will make sure to speak to one of the oncologists there but of course, the uncertainty keeps me up.

What has me a bit unsettled is the following:

Early November, mom went to her primary care physician because she had been experiencing right nipple discharge, flaking, and itchiness for weeks. The doctor prescribed her an ointment which didn't work. However, he told her he would send her for a quick biopsy to the nipple which mom had done at a private lab (not the hospital's). They scraped off a small piece and send it to pathology. Two days after that appointment, mom went to Europe for a few days and when she came back a week later, she received her results from that biopsy which read the following:

Diagnosis:

Right breast nipple:
Invasive Ductal Carcinoma, Moderate Nuclear Grade
Immunostain for Calponin, with Adequate Controls, Supports the Diagnosis.
Tumor measures 0.3 CM in Greatest Dimension (measured on slide).
It also appears to involve lactiferous ducts with ulceration of skin surface.
If results are positive please do ER/PR/HER2 test.

Results: ER-/PR-/HER2+

Mom immediately went to the hospital's breast center and she was given another sonogram and a needle aspiration biopsy to an area near the right nipple where she had been experiencing the itchiness and the discharge. That was 2 weeks after the first biopsy which had first determined she had IDC. The results came back as follows:

Right breast, 11 o'clock mass, 10 mm (size by imaging), gumby clip core biopsy
- DUCTAL CARCIONOMA IN SITU, HIGH NUCLEAR GRADE
ANCILLARY STUDIES: ER-/PR-

The carcinoma is best demonstrated in sections from block A2 where a microscopic focus of DCIS is present (1.3 mm in greatest dimension). The pattern is predominantly solid with papillary pattern or DCIS involving a papilloma.

The history of invasive ductal carcinoma is noted on report from (name of private lab, specimen number XXXX). Detached fragments of tumor are also present in sections from block A1 which could represent fragments of invasive carcinoma or DCIS inadvertently displaced during sampling or processing.

Stromal hypercellularity and atypia are noted surrounding a subset of ducts in block B1. The stromal cells are negative for pancytokeratin. E-cadherin and p120 catenin show no evidence of lobular neoplasia. The findings support the diagnosis.

A few weeks later, Mom went on to have a double mastectomy and immediate reconsutruction. She has been recovering extremely well. However, as I read her mastectomy report, this is what it says

Left Breast, mastectomy
- Ectatic ducts with usual ductal hyperplasia and apocrine cysts
- Negative for malignancy, three acillary lymph nodes (0/3)

Right breast, mastectomy
- DUCTAL CARCINOMA IN SITU, SOLID PATTERN, HIGH NUCLEAR GRADE
- Nipple with PAGET'S DISEASE
- Radial sclerosing lesion
- Negative for metastatic malignancy, six lymph nodes, including one sentinel lymph node as confirmed by additional deeper levels abd pan-keratin immunohistochemical stains (0/6)

Pan-keratin highlights the epithelium of the DUCTAL CARCINOMA IN SITU, while p63 and myosin confirm the presence of a myoepithelial cell layer. THERE IS NO EVIDENCE OF ADDITIONAL INVASIVE DUCTAL CARCINOMA.

This patient has an outside lab report from a biopsy of the right nipple from (name of privae lab). Those slides were not reviewed at this institution. The diagnosis is of an invasive ductal carcinoma of "moderate" nuclear grade measuring 0.3 CM in greatest dimension and involving lactiferous ducts with ulceration of skin surface. The reported immunohistochemical stains from that biopsy include estrogen receptor negative, progesterone receptor negative, and HER2/neu 3+ by IHC. Results from this biopsy will be used in the staging summary that follows. However, it is again noted that those slides were not reviewed at this institution.

Pathologic staging: (PTNM)
Primary tumor (pT):

pT1a: Tumor> 1mm but =5mm in greatest dimension (based on right breast nipple biopsy done at (name of private lab), again, slides not reviewed at this institution).
Regional lymph nodes: (pN): pN0: No regional node metastasis
Total number of nodes examined: 6 (1 sentinel and 5 nonsentinel)
Tumor focality: Single focus of invasive carcinoma
Tumor site (invasive carcinoma): Nipple
Histologic type: Invasive ductal carcinoma per outside right breast nipple biopsy done by (name of private lab)

My million dollar question is: Because my mom first had symptoms involving nipple discharge, itchiness, flaking – I think that explains why the mastectomy determined she had Paget’s Disease of the Nipple as those are hallmark symptoms. However, because Paget’s is so rare (2-3% of all breast cancers), I wonder if the doctor interpreted that as an IDC? Is Paget’s considered an IDC? Is that possible? It seems to me that the mastectomy primarily highlights the DCIS, Paget’s Disease, and the clean nodes. Consistently, the report shows that the hospital did not review those slides and were done by an outside lab. I’ve also read that Paget’s Disease and DCIS go hand in hand.

As for the oncologist, I'm wondering if she's basing her wanting to give my mom Taxol followed by Herceptin because of this supposed IDC. The oncologist has requested the slides from the private outside lab to be sent to the hospital for review. At first she wanted to give my mom a stronger chemo and then called hours later to tell her that Taxol followed by Herceptin is the best course of action. Taxol is supposed to be easier on the patient as it's not as strong as the one she originally wanted my mom to be on. I'm wondering why she changed her mind? Did she receive the slides and maybe there is a possibility that what my mom had biopsied that first time wasn't invasive after all? I don't know. But, it seems from what oncologist is saying and from what I'm reading here that because she is ER-/PR-/HER2+ she needs to do chemo and Herceptin (after chemo). Lastly, is it normal to wait for Herceptin following chemo? I don’t think they’re doing them simultaneously.

I didn't mean to go on and on, but I thought it was important for me to share as much clinical information as you all know how to interpret this info more than myself. Ultimately, the oncologist (and the other medical second opinions) is who/what is going to determine my mom's treatment, but hearing your perspective is so helpful because it's another source of information and who knows... something new can come up for us to consider. Learning from one another's experiences is so helpful. Oh, and the only reason I didn't name the private lab is because it wasn't done at the hospital, and I'm not sure if I can "legally" mention it.

I look forward to your thoughts. Thanks so much!

Alex