My “ADH & DCIS surgeries canceled” story

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JenInNY
JenInNY Member Posts: 13
edited April 2020 in Benign Breast Conditions

For the past 12 months now I've been dealing with an area of micro-calcifications on my right breast (well, now 2 areas).

I had my mammo last year then didn't hear anything for nearly a month. I was finally called and told they found suspicious micro-calcifications that required more imaging. So I went back. After a week, I was called back again- for even more images. I was then told to return in 6mo.

After 6mo they found a second area (right beside the 1st) and I was advised I needed stereotactic core biopsy. The plan was to get 8 samples from each area. They couldn't get me numb during this horrific procedure and were only able to obtain 2 samples from the original area of micro-calcifications. The findings were ductal hyperplasia. The breast surgeon recommended an MRI.

The MRI took nearly 2 months to arrange ..Those findings were -

'6mm region, curvi-linear, non-mass enhancement with rapid washout kinetics. Highly suspicious.
MRI guided biopsy recommended. Recall: Immediate '

It then took 6 weeks to arrange this biopsy. Because.. #1. I'm allergic to Gadolinium #2. I have this local anesthesia problem with getting numb so I needed somewhere that would consider doing it under sedation (Not happening) #3. It was now mid/late March and COVID19 was roaring into NY.

Finally got my MRI guided vacuum assisted biopsy done at Sloan on 3/31. Results are: "Markedly Atypical Ductal Hyperplasia (ADH), which also involves detached fragments of intraductal papillary lesion, worrisome for (low grade) ductal carcinoma in-situ (DCIS)

~Case reviewed at the interdepartmental breast pathology consensus conference.

I was told to have a surgical biopsy ASAP, but upon calling the surgeon's office I was advised that “all ADH & DCIS surgeries were canceled” until at least the end of May. I now have a tele-consult at the end of April with their breast surgeon.

This feels especially scary because it’s already been going on for over a year. Living in NY... I *know* that this surgery isn’t happening at the end of May either. From everything I’ve read, “Markedly Atypical Ductal Hyperplasia” is more often than not found to be a malignancy - especially with the intraductal papillary lesion involvement.

Should anything be done during this waiting stage?

Comments

  • Beesie
    Beesie Member Posts: 12,240
    edited April 2020

    With ADH, even if no DCIS is found, you would be considered high risk. One option for those with ADH is to reduce the risk by taking Tamoxifen. Similarly, there are currently clinical trials underway for "active surveillance" of low risk DCIS where the patients are taking Tamoxifen instead of having surgery.

    Personally although there is a movement to reduce surgical intervention for low risk DCIS, I would want to have any DCIS removed. But as a short term option to hold you over until surgery, you might want to askyour surgeon (or an oncologist, if you can get access to one) about Tamoxifen. I have noticed in posts from a couple of women on the board who have small invasive cancers and who have had their surgeries delayed, that this is the approach taken for them.

  • JenInNY
    JenInNY Member Posts: 13
    edited April 2020

    Thank you for the reply, Bessie.

    I was considered high risk even before this finding because I have very dense breasts, mom and maternal aunt both had BC in their 40s.. I’m also full of Fibroadenomas so it’s very difficult for me to do thorough self breast exams. All I feel are lumps.

    I’m 47 and I’ve already had at least 10 (more like a dozen+) biopsies in the past 15yrs. It’s like just waiting for the hammer to fall.

    I will inquire about Tamoxifen. thank you again

  • obsolete
    obsolete Member Posts: 466
    edited April 2020

    Hi Jen, so very sorry that your imaging & clinical findings are found to be challenging, along with your family's tragic health history. You might consider reviewing your case with dedicated breast pathologists and MD's who are familiar with the entire spectrum of papillary lesions.

    The two words in your report which I find most troubling are "fragments" of "papillary", which can imply multiple things. I do not see the word "benign". First, papillary carcinoma lesions under 5mm sometimes do NOT show up on MRI, I had been told by breast surgeons, diagnostic radiologists and breast pathologists. 2nd, there's often NO clinical & pathological correlation on papillary lesions. 3rd, there are multiple types of papillary lesions, some benign and some malignant. Hence, it's strongly suggested that you discuss the following information with your medical team and/or obtain 2nd & 3rd opinions.

    "Papillary lesions of the breast range from a spectrum of benign intraductal papillomas with and without atypia to papillary carcinoma. Distinction between benign and malignant lesions on core needle biopsy (CNB) is difficult without surgical excision... .In conclusion, surgical excision is still recommended for benign papillary lesions diagnosed on CNB because the correlation with clinical and radiological findings does not assure benign pathology. . ."

    https://www.ncbi.nlm.nih.gov/pubmed/23025963

    "Papillary lesions of the breast are exclusively intraductal neoplasms, although rarely an invasive carcinoma of the breast may have a predominantly papillary architecture. The spectrum of intraductal papillary lesions comprises intraductal papilloma, papilloma with atypical ductal hyperplasia (ADH), papilloma with ductal carcinoma in situ (DCIS), and intraductal papillary carcinoma. Although the definitive classifications of encapsulated papillary carcinoma and solid papillary carcinoma remain controversial and not universally accepted, these entities are generally regarded as variants of intraductal papillary carcinoma for staging and management purposes."

    "A benign intraductal papillary lesion is characterized by the presence of a layer of intervening myoepithelial cells in the fibrovascular fronds, whereas its malignant counterpart lacks an intact myoepithelial cell layer within the papillae. Although histologically recognizing a lesion as papillary is typically not challenging, the distinction among the aforementioned entities is not always straightforward...."

    https://www.archivesofpathology.org/doi/10.5858/arpa.2015-0092-RA

    Jen, where you are now, some of us once were in your position. I ended up having invasive solid papillary carcinoma with IDC & mucinous carcinoma mixed. It's good that you are being extra cautious in advocating for yourself. Keep on pushing.... Best wishes!!

  • Beesie
    Beesie Member Posts: 12,240
    edited April 2020

    While the words "fragments" and "papillary" could lead to several diagnoses, the fact that the area of concern is calcifications and not a solid mass would suggest that this is most likely to be either benign or DCIS or microinvasive. And in fact looking at the two words in the context of the entire sentence, the Pathologist has already indicated what he/she believes the diagnosis might be. It says "Markedly Atypical Ductal Hyperplasia (ADH), which also involves detached fragments of intraductal papillary lesion, worrisome for (low grade) ductal carcinoma in-situ (DCIS)".

    So what the pathology report is saying is that there are fragments of an intraductal papillary lesion found within the ADH, leading to the concern that this might be low grade DCIS.

    Of course, it's impossible to know the diagnosis until the final surgical pathology is available. Approx. 20% of needle biopsy findings of ADH are upgraded to malignancy once surgery is done, with most being DCIS. Approx. 5% percent are upgraded to invasive cancer, most often microinvasive but rarely, a larger invasive cancer. So the risk of a more serious invasive cancer is real but small, particularly in light of the assessment of the Pathologist.

    Jen, it sounds like you and I have very similar family and breast health histories. I had my first fibroadenoma removed at 16. As for biopsies, between aspirations, core needle/stereotactic biopsies and excisional biopsies, I don't even know how many I've had. In my case, when I had an excisional biopsy after a stereotactic biopsy finding of ADH, my final diagnosis was DCIS-Mi, DCIS with a microinvasion of IDC. Not quite as good as Stage 0 DCIS but as close as you can get.

    Have you been able to get in touch with your doctors to discuss the possibility of starting on Tamoxifen?

  • JenInNY
    JenInNY Member Posts: 13
    edited April 2020

    OMG, I cannot thank you enough for this information. After all of the research I’ve done I cannot believe I haven’t found this yet myself!

    I see now why “fragments” are (or can be) so significant. When I first saw “fragmented” in the report, I assumed it meant the lesion was damaged during the biopsy.. or (for whatever reason) only partial “fragments” of the lesion were taken (by design). But after reading this, I can see the significance of it being an indicator of malignancy.

    When the radiologist called me, he stressed that his concern was for the the two issues combined- the ductal papillary lesion and the ADH. If I understood correctly (and it’s possible I didn’t because it was a HIGHLY STRESSFUL DAY & CALL)... I believe he said that on their own, each one was high risk, but together was of much greater concern and leaned toward DCIS. He even suggested to be prepared for more that ADH upon excision. He then told me to call “right away” for surgery. He had called me after 5pm so I had to wait until the following day.

    Now, for several reasons... I pushed to have this MRI VAB done at MSKCC after they reviewed amy imaging from past several yrs. The breast surgeon I’ve seen for the past 5yrs is not affiliated. I had seen a breast surgeon with MSKCC for nearly 12yrs (up until 5yrs ago)- but because I was only high risk without dx, I was booted from the program.

    So now... here I am.. again... with no definitive diagnosis, but definitely not in a good place. I’m not confident with my current breast surgeon. I have a phone consult with my old breast surgeon at MSKCC - but not until the end of April. If I want the advice of my current breast surgeon then I have to bring her “my SLIDES” and I’m not sure if that means that MSKCC won’t then have them anymore. I don’t know if I should call someone entirely different. And if so - who? And what to ask.

    I truly feel lost because I’m in between doctors and facilities. I don’t have “a team”. I’m floating around between the two on no one’s radar and that frightens me.

    Do I call another surgeon? An oncologist? The radiologist? I’m ready to call a psychiatrist, lol

  • JenInNY
    JenInNY Member Posts: 13
    edited April 2020

    also... I'm not sure that I'm a candidate for Tamoxifen because I have Factor V Leiden (thrombophilia). I’m a complicated pain in the butt

  • Beesie
    Beesie Member Posts: 12,240
    edited April 2020

    Jen, with Factor V Leiden, Tamoxifen is likely contraindicated. That's unfortunate.

    What I was trying to explain in my post is exactly what the Radiologist told you, which is that your biopsy findings are leaning you towards DCIS. As I mentioned, approx. 20% of ADH needle biopsies end up being DCIS. What your Radiologist seemed to be saying is that the ADH combined with the intraductal papillary lesion is leaning you more heavily towards a diagnosis of DCIS. But importantly, he did not say "invasive cancer" nor does the wording on the pathology indicate a high risk of invasive cancer - in fact it specifically states "low grade DCIS". While obviously a final diagnosis of ADH would be preferable, DCIS is a non-invasive malignancy that many experts today define it as being a pre-cancer. This is particularly true of low grade DCIS. Of course, to the information provided by Obsolete, anything is possible, including a final diagnosis of invasive cancer, but the risk of that is low.

    This study found a 26.8% upgrade rate when the preliminary diagnosis was an intraductal papillary lesion with atypia: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC52040...

    This study found a much higher rate of upgrade for atypical intraductal papillary lesions (67%) but most of the upgrades were to either LCIS (a high risk condition) or DCIS: https://www.ncbi.nlm.nih.gov/pubmed/17090707?dopt=...

    Then there is this very detailed article about atypical intraductal papillomas: Pathology of Papilloma With Atypia or Ductal Carcinoma in Situ

    • What is the prognosis of atypical papilloma? "Several studies have indicated that atypical papillomas diagnosed with CNB require excision, as they may harbor DCIS in the papilloma and/or adjacent duct spaces. The rate of finding DCIS (or invasive breast cancer in rare cases) on excision of an atypical papilloma ranges from 22%to 75%. This is higher than the rate of finding DCIS on excision of common benign IDP diagnosed in CNB."

    .

    Lastly, here is a graphic from the BCO site, showing ADH, DCIS and invasive cancer. You can see why DCIS is considered by some to be a pre-cancer, since it more closely resembles ADH in that the malignant cells are fully contained within the milk duct. That's not to downplay the significance or concern with a DCIS diagnosis but to offer perspective on what your Radiologist and Pathologist are saying is the risk that you face, given the uncertain times and the delays that you are facing.

    image

    Since it was your Radiologist who suggested that you schedule a surgical biopsy as soon as possible, would you be able to speak to him to see what he recommends you do?
  • JenInNY
    JenInNY Member Posts: 13
    edited April 2020

    I'm not sure if I can speak with him. I don't really understand how this all works. I suppose I can call, but I never considered a diagnostic radiologist a doctor that I could reach out to before.
    I have an enormous, hard, painful hematoma now too- larger than an egg. So I guess I could discuss that with him as well.

    The other thing I forgot to mention is, I've had symptoms consistent with Pagets in this breast since January. I've had terrible pain (like nerve pain..deep inside like a cigarette burn pain), deep itching, dry/scaly area on areola and occasionally find staining of discharge on my bra. I chalked it up to trauma from the stereotactic biopsy. Now that I've had this MRI guided biopsy with a giant hematoma 3 months later, my breast hurts so much that I hate to move. And everything about it looks and feels messed up 😔

    I guess he's the guy to discuss this with?

    Happy Easter (if you celebrate)


  • Beesie
    Beesie Member Posts: 12,240
    edited April 2020

    I got a huge hematoma once after a stereotactic biopsy. I was getting a lot of large cysts in those days and since it didn't form immediately, the surgeon assumed it was a cyst and drained it, which turned out to be fine because it never came back. But I believe usually hematomas are left to re-absorb on their own (but I could be wrong on that).

    The staining that you've had previously might actually be a good sign. From the first article I linked: "in the upgrade group, there was a trend towards a higher proportion of palpable masses and lower proportion of nipple discharge symptoms".

    Yup, I think the Radiologist might be your best bet for now, since you've already talked to him and he's the last one to provide guidance on what you should do - and you are in a position where you can't do what he advised. He also would be the right person to speak to about the hematoma. Since he's probably not doing many procedures these days, he should have lots of time to speak to you!

  • JenInNY
    JenInNY Member Posts: 13
    edited April 2020

    thank you so very much

  • LowcountryGirl
    LowcountryGirl Member Posts: 29
    edited April 2020

    Beesie I had to laugh. I ended up with a softball size hematoma after a steriotactic biopsy (brutal procedure) about three years before they found my breast cancer in the same spot. They picked me up off the table with my bloody, bruised breast and walked me across the room to set my breast on a mammogram machine. After all that, they were going to crush it? I got dizzy so they brought me juice and crackers... :/. Thought for sure I would pass out

  • JenInNY
    JenInNY Member Posts: 13
    edited April 2020

    OMG! When they did my post MRI guided biopsy Mammo, I bled everywhere! On everything! They had to change the steri-strips twice afterward. I wish they sent me home with some because I bled through those before I made it through the door.

    And can we discuss the degree of PAIN with squishing a friggin’ hematoma!?!? Like NO JOKE. I’ve handled pain in my life. I’ve had babies. Brain surgery, spinal surgery, KIDNEY STONES... but take my boob and squish it with an active hematoma in it and you’re lucky I don’t punch you in the face. Oh•my•Gawwwwwd. I almost passed out.

    The hematologist claims I have a clotting problem- heh. I beg to differ. 😳 I bled like a stuck piggy

  • LowcountryGirl
    LowcountryGirl Member Posts: 29
    edited April 2020

    Got my biopsy back today. Benign Papilloma. I've never heard prettier words than that.

    The onco still wants it out of there and therefore another lumpectomy is on the way. I'm wondering if I should've just done the mastectomy the first time around. I also feel like I want to change hospitals. Any opinions out there on Mayo in Jacksonville? MD in Jacksonville?

  • JenInNY
    JenInNY Member Posts: 13
    edited April 2020

    Wonderful news!! I’m very happy for you

    💕

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