Questions about diagnosis and pathology report

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AngelaJL
AngelaJL Member Posts: 94
edited August 2017 in DCIS (Ductal Carcinoma In Situ)

Hello all! I'm 43 and was just diagnosed with DCIS Grade 0 (assuming "low grade" means Grade 0), and I'm very glad to have found this site.

After a regular screening mammogram on 8/1 detected areas of microcalcifications in both breast that were "suspicious of malignancy", I had biopsies on both sides on 8/9 and was diagnosed on 8/15 with DCIS on the right and atypical cells on the left. The breast surgeon is recommending lumpectomies on both sides. Tomorrow I meet with the RO and MO and schedule surgery.

I was just looking over the pathology report, and I'm a little puzzled by some differences between what has been found at each step along the way so far. Here's what the three reports said for the right side:

  • Mammogram: "6 mm area of clustered pleomorphic calcifications in the right breast at 12 o'clock middle depth"
  • Biopsy: "6 mm area of clustered calcifications located in the right breast at 11 o'clock middle depth"
  • Pathology: "foci of low grade ductal carcinoma in situ with micropapillary and cribriform growth patterns and associated microcalcifications (largest area measures 1.2 cm along the length of one core)"

So, the location is slightly different - is that normal? - but the size difference is what surprises me the most. The mammogram showed a 6mm area, but the biopsy found an area 1.2cm (12mm) in length.

  1. How is it twice the size they detected on the mammogram?
  2. Is that because I have dense breasts and the mammogram was inaccurate?
  3. Is it possible they'll find significantly more when they do the lumpectomies?

I was also told (and can see on the report) that it's ER Positive (>95%) and PR Positive (>90%) and that this is a good thing. The breast surgeon said that I'll probably be put on hormone blockers (Tamoxifen?) for 5 years after 4-6 weeks of radiation.

What I'm wondering now is:

  1. Since this is (as far as we know at this point) DCIS Grade 0, do I really need to go through 5 YEARS of hormone blockers? Do the risks of not taking it actually outweigh the (significant) possible side effects for someone with such an early, low grade detection? I will be asking the MO this tomorrow, for sure.
  2. Do other people with my diagnosis decide to just stop after the lumpectomy and not do radiation and hormone treatment? My breast surgeon said that he thinks the current guidelines indicating a need for a lumpectomy also on the left - where there's no DCIS but just atypical cells - are overcautious.
To clarify, it's not that I don't want treatment. I just don't want to make my quality of life significantly worse if the benefit isn't great enough. But I'm also REALLY not a risk taker, so big part of me just wants to go along with whatever the doctors say!

As it is, I've got several pages of questions that I'm taking to my appointments tomorrow. I hope they've blocked off enough time for me to get through them all!

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  • Beachmama
    Beachmama Member Posts: 42
    edited August 2017

    aw - you sound just like me in April! I'm 43, too, and they found calcifications on my mammo and dcis in my left breast with a biopsy. Unfortunately, dcis can be tricky. I had two lumpectomies without clear margins. After further Mammos and biopsies, they realized I had extensive dcis in both breasts that was not showing up on imaging and a microinvasion in my right breast. I am recovering from a BMX and feeling thankful this was all caught early. I still have to discuss tamoxifen with the MO, too. Everyone says my case is unusual, so I'm sure you will be more typical, but I really wish I had known all of this was a possibility in the beginning and was more prepared for the wild ride. They told me stage 0, a quick lumpectomy, and some radiation and hormone therapy. I thought it would all be over in 2 months. It does not always go that way. My friend at work had the same diagnosis and her treatment went smoothly with no surprises and she was done in 2 months!

    It sounds like you are on top of things and have great questions! I wish you well!

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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited August 2017

    DCIS is Stage 0, not Grade 0. There are only three grades: 1, 2, and 3. “Low-grade” probably means Grade 1, the slowest-growing kind. If you have to have cancer, Grade 1 is as good as it gets, and ER+/PR+ even better prognostically. (And chemo is not even on the table for DCIS).

    You’d probably be able to avoid radiation with mastectomy. But when a breast is gone, it’s gone. With a lumpectomy you can always change your mind. And if the left side is probably ADH, a bilateral mastectomy (BMX) is probably overkill; and even lumpectomy is still major surgery. Your surgeon is probably ahead of the curve advising you to just regularly monitor the left side. (But I’m confused—at first you said he recommended bilateral lumpectomies, but later on in your post you mentioned he thinks a lumpectomy for the ADH breast may be overkill).

    A friend of mine had extremely small dense breasts, with 6 cm of widely scattered Grade 3 DCIS in one and “suspicious scattered densities” in the other. She was also ER-/PR-, but she was 70 and widowed, didn’t want to date, and hadn’t even worn a bra in 30 years. So for her, a BMX without reconstruction made sense, even though her surgeon tried to talk her out of removing the other breast. The other breast turned out to have some ADH. Because she had DCIS and a mastectomy, she didn’t need radiation; and because she was hormone-negative, no anti-hormonal meds. For her, it was “one and done” and she’s gotten on with her life. But with hormone-positive DCIS, anti-hormonals offer you the greatest survival benefit.

    Will your surgeon or oncologist order an OncotypeDX? It’s usually done after surgery, but your biopsy sample might be big enough to grind up & assay. There is a separate OncotypeDX for IDC and DCIS—they both assume anti-hormonal therapy; the IDC version estimates recurrence risk (and therefore the need for chemo); the DCIS version estimates recurrence risk with and without radiation (again, DCIS doesn’t get chemo). You might be able to get your right lumpectomy and go straight to anti-hormonals without radiation. I will tell you that the overwhelming majority of patients with hormone-positive DCIS opt for the anti-hormonals.

    DCIS, because it stays within the duct, is often larger in its longest dimension because the milk ducts are like pipes. (The core biopsy samples are also little tubes of tissue). And 12:00 and 11:00 are close enough to be the same location—the breast can be in slightly different positions for the mammo and ultrasound. What they end up taking out and from where are the definitive measurements.

    ADH isn’t a “pre-cancer,” but rather a risk factor for cancer. If they do a lumpectomy for it, they usually don’t do a sentinel-node biopsy as they might during a lumpectomy for DCIS. The fewer nodes that get disturbed or removed, the lower your chances of lymphatic system problems down the line.

    Of course, should they find invasive breast cancer during the surgical pathology, the treatment decisions might be different. If there is both DCIS and IDC, it’s always the invasive component (even if smaller) that drives treatment going forward.

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  • AngelaJL
    AngelaJL Member Posts: 94
    edited August 2017

    Thank you both for your replies! I meant Grade 1, not 0! Sorry. So yes, DCIS Stage 0 Grade 1. This does seem like the least-worst kind to have!

    On the left side, there's no ADH. The pathology report says, "breast tissue showing one focus of columnar cell change with atypia or flat epithelial atypia with associated microcalcifications; negative for ADH, DCIS or invasive carcinoma".

    As far as what the breast surgeon said, he thinks the current guidelines recommending lumpectomy on the left side are overkill, but he'll follow the guidelines and do the lumpectomy on that side, too, unless I object.

    I've only had mammograms and mammogram-assisted biopsy so far; no ultrasounds. Do they usually do an ultrasound, too?

    I'll be asking about the oncotype test today at my consultations.

    There's so much to think about!

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  • MTwoman
    MTwoman Member Posts: 2,704
    edited August 2017

    Angela, they may do an ultrasound, they may also do an mri, which can pick up things that both mammo and us missed, as in my case. I had an initial lump, which was biopsied, followed by lx. After an mri, I was found to have 2 more foci of dcis in another quadrant, so then had mx. So you should discuss the oncotype test and ask about what additional imaging they'll be recommending prior to surgery. Think about bringing either a level headed family member/friend to take notes, or ask if you can record the consultation. There will be a lot of information and it can get overwhelming and then difficult to remember it all well later. ((hugs))

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  • buffyjc
    buffyjc Member Posts: 61
    edited August 2017

    AngelaJL - Sometimes additional imaging is recommended. For me, I had my screening 3D mammo, followed up by diagnostic mammo, stereotactic core biopsy (and immediate mammo of affected side), then MRI of both breasts. While my mammograms definitely proved extensive DCIS, the MRI showed even more. So, while I never had an ultrasound, I've read stories about many others who did have one.

    DCIS is definitely a tricky one! Best wishes to you!

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  • herewegoagain59
    herewegoagain59 Member Posts: 13
    edited August 2017

    I had DCIS on left right in the middle of breast.I HAD RADS.but now seeing something else on mammo.after two years.My question to you is one I ask myself often.would I rather take the chance on survival then the side effects of meds and my answer is do what it takes to survive

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  • AngelaJL
    AngelaJL Member Posts: 94
    edited August 2017

    Herewegoagain, it's interesting you mention survival. In my consultation with the medical oncologist this afternoon, he said studies have shown no difference in survival rates between DCIS patients who had lumpectomy and radiation vs those who also had Tamoxifen. He said it does not affect survival rates, just the odds of a recurrence being invasive or not. I was surprised by that.

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