Info and Experience with Apocrine DCIS?

jules72 Member Posts: 13

Greetings all,

I had my surgery last week and the path report shows I haved a rare form of DCIS - Apocrine DCIS - Cribriform, no necrosis, low and intermediate grade, ER/PR negative. It was 2.8 CM and 2 of the margins having only 1 mm clear to edge. So I need more surgery at least for cleaner margins and I need to decide between radiation and mastectomy.

I can't find much about this apocrine DCIS to understand the implications or difference from "normal" DCIS. Does anyone have information or experience to share? I would really appreciate it.



  • CAMommy
    CAMommy Member Posts: 93

    from what I see it isn't much different from regular DCIS. Most important thing is nuclear grade. I guess because it's estrogen negative you won't need tamoxifen.

  • BLinthedesert
    BLinthedesert Member Posts: 37

    I also had this type of DCIS. It is very rare (<5%?), and most people with apocrine DCIS end up with MX primarily because it tends to be higher grade and larger. Most of the evidence about recurrence suggest ER-/PR- comes with a higher risk of recurrence, whether this is because of the underlying subtype of cancer itself, or because there is no further available treatment after radiation is unknown (since tamoxifen further reduces risk of recurrence by an addition 50% -- so if your risk of recurrence is 20% then between radiation and an ER inhibitor your risk would theoretically be reduced to 5%).

    Many invasive apocrine cancers are triple negative (ER-/PR-/HER2-), since DCIS seems to be a pre-curser to invansive cancer (meaning if you do recur with an invasive cancer it is typically the same subtype as the DCIS cancer), many believe that apocrine DCIS is more likely to be triple negative as well, which is a higher risk cancer. However, there is suggestion that even this invasive form is not as agressive as non-apocrine triple negative. The primary difference is that apocrine types are AR+ (androgen positive) -- there are some clinical trials that are underway looking at AR blocker therapy for women who are ER-/PR-/AR+.

    I chose lumpectomy and radiation -- even though my risk of recurrence is fairly high based on all the "calculators" -- I am comfortable with my decision. I have good follow-up care (see my radiation oncologist every 6 months) and don't worry about it all I feel safe and cured :) -- that said, I did a lot of research when I was making up my mind between MX and lumpectomy.

    Good luck,

    (edited to include current studies on AR+ directed treatment)

  • ballet12
    ballet12 Member Posts: 66

    I also had apocrine DCIS. I'd have to go back to the pathology report to determine if all of the DCIS had apocrine features, but I believe so. I tried to get more information on this initially, but the original surgeon didn't have anything to say about it. Anyway, the treatment protocol is no different for this kind of DCIS than others. Mine wasn't triple negative. In the largest sample (from the first of three surgeries), the ER was 30 percent positive and PR was negative. On the second excision (much smaller sample), the ER was higher. I did radiation treatment (Canadian protocol) but declined hormonal treatment. Edited to add that there was comedonecrosis and it was high nuclear grade (agreed by second set of pathologists).

  • BLinthedesert
    BLinthedesert Member Posts: 37

    Hi Ballet,

    You must not have had pure apocrine DCIS - since by definition it has no ER or PR; apocrine breast cancer (both DCIS and IDC) is defined as: ER-/PR-/AR+. It is a very distinct subtype, in part because it does not express ER or PR. It is of unknown significance - primarily due to its rarity it is difficult to assess. That said, ER-/PR- does have an increase risk of recurrence - they are not sure if it because of the fact that hormone therapy is not an option or because the subtype has higher risk. Also, aprocrine DCIS cases typically present as palpable masses -- which also increases risk of recurrence. All the current molecular subtyping literature is calling it out as its own classification.

    I hope I was clear, I did not say it was triple negative, I said that "most" aprocrine subtypes are also HER2-. I also did not say it was treated any differently than any other ER/PR negative DCIS (which is less than 25% of the cases) -- it is generally just thought to have a higher risk of recurrence. I hope this is clearer.

    Apocrine molecular subtype (specific to invasive, but invasive cancer arising from DCIS typically shares the same molecular subtype)

  • jules72
    jules72 Member Posts: 13

    I just read this in a post from Beesie on March 3, 2014.

    "Micropapillary patterned DCIS and apocrine DCIS (if it's lower grade without necrosis) tend to be less aggressive. "

    So I was thinking the apocrine dcis was less aggressive versus more Does anyone have actual research links to share to help me understand?

  • ballet12
    ballet12 Member Posts: 66

    Hi Blinthedesert, I actually read one of the NIH links which said it is usually ER/PR negative. I will look up the path report. It doesn't really matter that much to me in any case, as I already completed treatment. It would only be of academic interest (and I recall you are an academic). I could try to find the link, and I'll locate my path report. My previous ADH biopsy also had the apocrine features (years earlier). I'm happy to take any hormone receptivity, as apparently that makes the chance of recurrence lower (apparently even without hormonal treatment), and happy to not be pure "apocrine" DCIS. And I was too quick to say "triple negative." I stand corrected, as always.

  • BLinthedesert
    BLinthedesert Member Posts: 37

    Jules, ER negative DCIS typically has slightly higher rate of recurrence simply because tamoxifen is not given (to reduce risk 50% more post radiation).

    "apocrine" features of cells is different from "apocrine DCIS" - apocrine features of cells are seen in normal-but-aging breast tissue, the apocrine subtype of DCIS is a pathologic subtype of DCIS that has a weird pathologic pattern. This weird pattern (big cells) makes it a little more difficult to grade into low/med/high because the usual way of grading does not apply. Further, these unique looking cells are typically ER-/PR-. This is a very rare subtype of DCIS so making large sample generalizations is difficult. Therefore, there are conflicting evidence of its significance - but pathologists do know the difference because it is challenging for them to grade properly.

    All DCIS has *excellent* prognosis, and generally we are thought "cured" after treatment. We are simply at a higher risk of recurrence than the general population. The degree of risk of recurrence depends on a lot of things -- including treatment options. The rule of thumb is that MX and lumpectomy+radiation+hormone therapy result in equivalent recurrence rates. For ER- patients there is no hormone option so we have a *slight* increase of risk simply because of treatment options. Additionally, ER- correlates with higher grade, larger size, and other risk factors for recurrence. Again it is hard to generalize because ER- DCIS is a less common type of DCIS.

  • ballet12
    ballet12 Member Posts: 66

    Hi Blinthedesert, I am confused as the path report showed the following:

    Histological type: Intraductal Carcinoma, Apocrine Type

    Archictectural Patterns: Mostly flat and focal solid type

    Nuclear Grade: High

    Necrosis: Central necrosis is present

    Margins: Involved by Intraductal Carcinoma, multiple foci

    So, now you see my confusion. It's labeled as Apocrine Type (?) Does that just mean aging breast cells or does it mean Apocrine DCIS.

    Then with the estrogen receptor listed as positive: 30 percent moderate nuclear staining, and negative progesterone, I guess it isn't Apocrine DCIS. Again, purely an academic question at this point, and when I was finally treated at MSKCC, they didn't even mention anything about this. The original surgical biopsy was done at another well-regarded teaching hospital in NYC, with multiple pathologists reviewing the results.

    So, what's your take?

  • BLinthedesert
    BLinthedesert Member Posts: 37

    Cool!!! you are one of the few with apocrine subtype and ER+ (congratulations??) ha ha - none of the literature says apocrine is *never* ER-, it just says "typically", because there are no absolutes

    there are many different staining and scoring techniques for ER (and HER2), it is rare when a pathologist actually quantitates ER into percentages -- PR is notorious hard to quantitate, it has a very high variability when reading raw percentages. Even HER2 has several different types of antibodies - each of them have their own scoring algorithm. So, my guess is that either you are one of the even rarer cases of ER+ apocrine subtypes, or 30% ER could be borderline ER+ based on the test the pathology lab your sample got sent to used for their evaluation.

    Like you said, it did not change your treatment options (if I had received that path report I would not have opted for hormone therapy either!) - good news is the MSK is great place, have you ever seen their calculator?

  • ballet12
    ballet12 Member Posts: 66

    Hi Blinthedesert, in the surgical re-excision at MSKCC (first surgery elsewhere), the much smaller sample was found to be 90 percent ER responsive (go figure). Still, I'm staying away from those AI's.

    My surgeon at MSK was the author of the nomogram--and guess what? She didn't even use it with me or even bring it up.

  • redsox
    redsox Member Posts: 24

    I am not surprised that your doctor did not use the nomogram. It can be very helpful but also can be deceiving if you have unusual factors that it doesn't account for or if the choices on a question don't quite fit your situation

  • jules72
    jules72 Member Posts: 13

    Thank you so much for taking the time to explain. At this point I'm so happy to have found it while it's still in situ. I am leaning toward mastectomy which I think would put me in more of a 2% risk of recurrence I hope. I can deal with that. My surgeon said we could do a nipple sparing mastectomy which I'm happy about as well. Still a lot to go through but looking forward to putting this behind me and getting back to a new normal. I will keep you all in my prayers

  • LilyJune
    LilyJune Member Posts: 3

    Just to let others know I've had my 3 year mammogram without recurrence. Hope I'm adding to the statistics and giving others with the strange Apocrine breast cancer confidence in treatment. Lump was also triple negative. Treated in the UK. DCIS grade 2, 14 mm, of which 6 mm invasive. No node involvement. Surgery, FEC, 15 rads with 3 booster rads at end (normal rads for UK). Age 61 at diagnosis.

  • Suzi_4
    Suzi_4 Member Posts: 4

    hi blincthedesert im pure dcis high grade i had lumpectomy im pr - er - so i don't know if tamoxifen is good for me can please help

  • BLinthedesert
    BLinthedesert Member Posts: 37

    Hi Suzi_4 -- you won't be offered tamoxifen, as it is only for ER+ tumors. Have you talked to a radiation oncologist yet? Depending on the size of your tumor you will either have lumpectomy + radiation or mastectomy as options. Both have a very good prognosis! I am nearly 6 years out and no problems! Good luck to you!

  • MTwoman
    MTwoman Member Posts: 228

    I am 14, nearly 15 years NED and no problems here either! Good luck!