DCIS and the inevitable "STANDARD OF CARE" recommendations

anib
anib Member Posts: 4

I was hoping to be the poster child for low grade DCIS. I had a surgical biopsy of a duct after a tiny bloody discharge. The first pathology was DCIS, solid papillary type with a low grade. Second opinion at tertiary breast cancer center OHSU mentions low to intermediate grade. Surgeon recommends a contrast dye MRI and Oncotype DX DCIS score be done. Oncotype results in a 2 out of 100 score, great right? Surgeon tells me they have never seen a score come back that low. MRI shows a much larger and deeper area of concern. Ultrasound guided needle biopsy shows solid papillary carcinoma as well as DCIS. Surgeon tells me wire located lumpectomy biopsy results will be more conclusive.

Now after lumpectomy with clean margins, 3.3 cm positive margin area removed, Intermediate cell type(?), but Nuclear grade I, I'm told the low Oncotype score no longer counts. On the Nomogram I score a 13 - 17% recurrence at 5 & 10 years. Also get much pressure to do Radiation (4 weeks higher RADS). Also upcoming Oncologist appointment where I will get the hard sell for Estrogen hormone blockers I'm sure. I'm told these are the Standard of Care recommendations.

All my fears of toxicity of hormone blockers and radiation are dismissed by the doctors.

I really don't want to do radiation therapy and wish we were 10 years ahead on the research…. Then maybe I will fit those low risk parameters where adjuvant treatment is not recommended.

Comments

  • Annette47
    Annette47 Member Posts: 957
    edited February 2017

    I’m sorry things aren’t turning out how they initially seemed. Honestly though, it is up to you which treatments you choose to pursue - the doctors can only make recommendations, they can’t force you.

    That said, I had both radiation and am in my 4th year of Tamoxifen and am not having any trouble related to either ...

  • anib
    anib Member Posts: 4
    edited February 2017

    Thank you for your quick response. Good to hear you are doing well with treatments. How many weeks of radiation did you do?

  • Annette47
    Annette47 Member Posts: 957
    edited February 2017

    I did the traditional 6 ... the shorter more intense protocol was not yet widely available. It was 5 weeks of whole breast, and 1 week of boosts directly to the tumor bed. I did have some swelling which took a long time to resolve entirely, but no skin problems - the area around the boosts got red like a mild sunburn, but that was it.

  • Kkubsky
    Kkubsky Member Posts: 231
    edited February 2017

    I am 10 month post radiation, (no tamoxifen as I am hormone receptor negative), and after the initial skin issues with radiation, I don't see any lingering effects. I did experience short lived skin issues which resolved quickly after radiation was done. I did have the shorter protocol.

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited February 2017

    For more information on the Oncotype test for DCIS, see my post here.

    https://community.breastcancer.org/forum/68/topics/851895?page=1#post_4892836

    I also responded to your post at the end of that thread.

    BarredOwl

  • obsolete
    obsolete Member Posts: 466
    edited February 2017

    Anib, regretfully I welcome you here. Apparently you've been handed the typical confusion associated with papillary carcinoma. Please bear with me, while we take a few steps backward to better review your dx.

    - It is common for MRI's to miss papillary tumors 5 mm and smaller, said several breast surgeons. Papillary lesions can occur in multiples, especially the papillary variant type found along the periphery (chest wall, outer edges).

    - Solid papillary often is associated with DCIS. Unfortunately it is associated with a conventional invasive component half the time, and multi-focal invasions are not uncommon. Often intermediate grade 2. It is wise to obtain 2nd opinion(s) on your final surgical pathology because I had 4 different pathology opinions on the invasive components and papillary variants.

    Assuming your papillary tumor was "intra-ductal", your invasive component would determine staging, oncotype dx and treatment. This is why accurate pathology is crucial.

    Please check out the Papillary Carcinoma thread here on BCO. Best wishes.

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited February 2017

    Patients who do not have pure DCIS are not "eligible" for the Oncotype test for DCIS, because the test has only been validated in certain patients with pure DCIS. This is also the reason why the DCIS test is typically ordered after the full surgical pathology from lumpectomy is available (to establish pure DCIS or "eligibility" for the test prior to ordering it).

    BarredOwl

  • obsolete
    obsolete Member Posts: 466
    edited February 2017

    Owl, Oncotype DX assay is for invasive components, if any. DCIS is off the table. Solid papillary (with or w/o invasions) is primary lesion.
    O

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited February 2017

    Hey - I've been reading Barred Owl enough to know that there are 2 different tests. One given to people with IDC and another one given to people with DCIS. I sure wish the DCIS test had been available when I was first diagnosed.

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited February 2017

    Hi Weareconnected:

    As you can see from line 1 of my prior post, I was talking about the "eligibility" for the "Oncotype test for DCIS", which requires pure DCIS.

    Again, in general, in connection with the question of added radiation, if a person initially diagnosed with apparently pure DCIS received the Oncotype test for DCIS on biopsy tissue (it is preferably given after breast conserving surgery), but is later determined not to have pure DCIS, the test result (Oncotype type for DCIS) would be disregarded in connection with decisions regarding radiation therapy. In other words, patients who do not have pure DCIS after definitive breast conserving surgery are not eligible for the Oncotype test for DCIS.

    Anib should clarify her complete diagnosis (based on all biopsies and surgeries) with her team and request expert confirmation that the reason her Oncotype for DCIS test result is being disregarded in connection with radiation therapy in her particular case is due to a non-DCIS diagnosis.

    BarredOwl

  • obsolete
    obsolete Member Posts: 466
    edited February 2017

    Anib, multiple medical researchers have indicated there's a tendency to over-treat "pure" papillary w/o invasion.

    Oncotype DX isn't always ordered for Stage-I papillary variants, but I would push for it. Most papillary lesions have high % Estrogen and thus result in promising low single-digit scores for typically grades I - II papillary carcinoma. Associated DCIS and concurrent papillary often have similar grading & genomic characteristics.

    Because papillary is a minimum Stage I, papillary carcinoma always trumps a conventional Stage 0 DCIS, although not a conventional invasive component (Stages I-IV). Therefore assays (Oncotype DX, etc) would be based on your primary component. Good luck!

    And ladies, nobody here is disputing the fact that multiple Oncotype testing is offered by Genomics. Focus is on the trump card DX (invasive components, if any, or Solid Papillary carcinoma..... Not a stage 0 DCIS). papillary is often confusing.

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited February 2017

    Hi Weareconnected:

    As you noted, in this DCIS Forum, the nomenclature for the rare non-DCIS cancer you are discussing is likely to be confusing to patients with pure DCIS (Stage 0, which may have "papillary" architecture).

    We are each emphasizing two different points, which are not inconsistent in any way:

    (1) that the result of a DCIS test (the Oncotype "12-gene test") (re radiation therapy) would be disregarded [Edit: or not relied upon] if a person did not have pure DCIS (Stage 0);

    and

    (2) that assuming the actual diagnosis was not pure DCIS (Stage 0), but was a type of Stage I disease, then the patient should inquire about the Oncotype "21-gene test" (re whether to add chemotherapy to endocrine therapy) with their Medical Oncologist.

    (By the way, even with pure IDC that is node-negative (N0), hormone receptor-positive, HER2-negative, if the tumor is "Tumor ≤0.5 cm including microinvasive", then NCCN guidelines do not include the Oncotype "21-gene test", and in such case it is often not done.)

    BarredOwl

  • anib
    anib Member Posts: 4
    edited February 2017

    Whoa... I haven't looked at this thread since yesterday. My pathology diagnosis from the lumpectomy on 1/20/2017 is- Ductal Carcinoma in situ, solid type, intermediate grade- size 3.3 cm - clear margins, closest 0.7cm

    Histologic Type- DCIS

    Nuclear Grade- Grade I

    The pathology from my Needle Biopsy done- 11/29/16 is confusing. When I asked the surgeon about it she dismissed it & said it showed nothing significantly different. That it was based on core needle samples that mash & damage cells and the pathology of the lumpectomy would more accurate.

    Do you think the needle biopsy finding of possible "solid papillary carcinoma" is meaningful now?

    Copy of Needle Biopsy Pathology- 11/29/2016:

    Final Pathologic Diagnosis:
    Breast, left, ultrasound guided core needle biopsies (GS16-15618;
    11/29/16):
    - Atypical papillary lesion, see comment

    Comment: The tumor is composed of solid nests of low grade ductal
    epithelial cells with delicate branching fibrovascular septae. The nests of
    tumor cells are surrounded by collagenous stroma. Extraceullar mucin is
    focally identified. The lesion measures at least 4mm.

    Submitted p63 and smooth muscle myosin immunohistochemical stains show
    predominantly preserved myoepithelial cell layers around the large nests in
    the intact portions of tissue. The interior fibrovascular septae s
    how focal
    presence of myoepithelial cells. No high grade features or definite
    invasion are identified in the biopsy.

    Submitted ER and PR immunohistochemical stains are diffusely positive.

    The differential diagnosis includes solid papillary carcinoma and ductal
    carcinoma in situ (DCIS) involving an intraductal papilloma. Definitive
    characterization of this lesion and assessment of invasion status should be
    performed on excision.

    My first Surgery was done 8/25/2016 was a surgical biopsy. A contrast dye was used to remove a small part of the duct and the diagnosis came back-

    Ductal carcinoma in situ (DCIS) low to intermediate nuclear grade, see
    comment
    - DCIS shows predominantly solid architectural pattern and involves an intraductal papilloma

    No invasive carcinoma is identified on calponin and p63/CK7
    immunostains

    Does this clear anything up?

  • obsolete
    obsolete Member Posts: 466
    edited February 2017

    Hi Anib, WHOA is right! Some people need to chill. Thanks for that info... Congratulations on a non-invasive pathological consensus. I had my fingers crossed for you. A couple minor details need clarification. Its getting late, so when I have my laptop tomorrow, I'll PM you, if that's Ok.

    Owl, we don't encourage plagiaristic comments. Or was that your rhetoric? Intellectual property owned by Genomic Health needs to be credited to same. People may visit GenomicHealth.com for info on Oncotype DX assays. Most of us know that, so I mean no disrespect.

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited February 2017

    The content of my posts above is my original authorship. The content of the post I linked to is also my work, except where I indicated what GenomicHealth states on their site re eligibility (along with a link to the company web site).

    BarredOwl

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