Confused about my pathology report

allegretta

Hello all!

This is my first post here although reading the forum has been invaluable after my diagnosis (I was recently diagnosed with an intermediate grade 4mm DCIS and had a lumpectomy).

Thank you all for creating such a supportive and warm community!

I'm de-lurking because many weeks after diagnosis I still don't totally understand my pathology report and what it means re the probability of recurrence. My doctors haven't explained much. They have a great reputation but they don't welcome questions. As soon as I asked about how common recurrence is I was cut off and told I should think positive and not worry about such things. I find it hard to be positive when I don't understand what I'm up against.

My pathology report says:

"Ductal carcinoma in situ 4mm, intermediate grade with necrosis and calcifications, type cribiform and micropapillary"

If I understand correctly cribiform is not a particularly aggressive form, but I've read conflicting reports regarding micropapillary. While most sites I read don't mention it as high risk there was this one site that said this:

Micro-papillary DCIS is now thought to be a highly malignant, dangerous presentation of DCIS, and is of the highest risk. [...] When the presentation is pure, it is often considered grounds for mastectomy in hopes of avoiding invasive micropapillary carcinoma.

Is this true? Are there any studies regarding recurrence?

Another question I have is whether all necrosis is "comedo necrosis"? I know comedo necrosis is more likely to recur but I'm not sure whether I have it. What does the phrase "with necrosis" mean and does it significantly affect my chances of recurrence? Is comedo implied in my case?

A third question I have is regarding HER2 testing. The cancer tested ER+/PR+ but my doctors didn't request HER2 testing (or any other test that could possibly provide other indications about risk of recurrence). Is this something that should have been tested? Can these tests be done at a later date if needed?

I hope someone can shed some light on my questions. I understand that ideally they should have been answered by my doctors but since they weren't particularly talkative and I was too scared to insist on answers any help will be appreciated. I plan to seek a second opinion at some point (hopefully with a more helpful doctor) but that wont be for some time and I would appreciate some answers in the meanwhile.

Moderators

Hi allegretta, and welcome to our warm and caring community! We hope you find the support and information you're looking for here!

In our main site you'll find great information on Diagnosis of DCIS that will help you understand all those terms from your pathology report. And we hope someone with experience on this type of cancer can help you here in the boards too!

Best wishes,

The Mods

SavedbyGrace1972

Allegretta

Have you considered getting a second opinion? I would question why my trammof doctors didn't want to answer any of my questions. After all, they are experts true but don't we hire them to perform a service for us? In some sorta of way we do don't we? They don't perform our surgeries for free do they?

All I can say is do lots of research and be your own advocate. Hugs to you and good luck.

windingshores

Keep getting "second" opinions until you are satisfied. I had supposedly top docs who didn't answer questions and my 3rd doc was amazingly helpful.

Annette47

I would also recommend getting a second opinion, even if it’s just on your pathology slides. It’s important you understand what is going on with your body in order to make informed decision about treatment.

I can however, answer one of your questions. HER2 is rarely tested in DCIS because the significance of HER2+ DCIS is not really known. In invasive cancer, HER2+ indicates a more aggressive cancer but not necessarily in DCIS. DCIS is much more likely to be HER2+ than is invasive cancer as well, and no one knows why. HER2+ DCIS is not treated with Herceptin, either, so there really isn’t a lot of benefit in testing for it.

I can’t really help with the other aspects though ...

Grateful_

Right off the bat I want to say that anyone who can write so clearly - like you do - and phrase questions so comprehensively is way ahead of the game. I'm a 3 yr survivor of IDC but now face a possible DX of DCIS (or something else since no mass was seen on my MRI. ) I didn't know how to organize my thoughts and questions half as well as you have and you are an inspiration to me! I was HER2+ in my earlier DX. I'm having a surgical biopsy in several weeks to determine what is going on in the contralateral breast. One question I have is the Oncotype DX test done on DCIS or LCIS. Since I've already been at a higher risk per being Her2+ (and I know they don't do Oncotype on Her2+) I don't know if that 'overrides' any future issues that the Onco text would be applied to.

I did experience that once I completed treatment I mentally - and emotionally - sort of had to start from the beginning and re-think everything, especially in light of what I'd learned during treatment (over 16 months!)

Now I could go back and edit this paragraph for clarity but I think I'll just hit "send"! and send YOU ALL love.

Peacetoallcuzweneedit

Allgretta - let me explain how I understand about the comedo necrosis...typically "comedo" necrosis is a characteristic of high grade DCIS - like mine was.

Necrosis can be seen and indicates that the cancers cells were dividing quickly and the necrosis comes from the cells that did not receive enough "food" and died. Comedo indicates that the duct was plugged by dead cells.....a plugged duct indicates more aggression because the DCIS cancer cells died and decayed in the duct and are continuing to grow fast enough or aggressive enough to "live and die" quickly completely clog the duct...in slower growing DCIS there might be some necrosis but the duct is not clogged/plugged and typically the DCIS is not considered high grade.