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.

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!!

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."

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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.

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!

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

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?