DCIS/PLCIS - common to find invasive cancer on subsequent tests?

AMLMom

Good afternoon. On Wednesday, I was diagnosed with either high-grade DCIS or high-grade PLCIS (still waiting for the E-cadherin test to determine which) and comedo necrosis. The pathology report says that the cancerisation of the lobules is extensive with no evidence of invasive carcinoma in the multiple levels examined (x3/block). I'm still figuring everything out, but my understanding from the doctor is that this really isn't that bad.

Next steps as they have been described to me are as follows: 1) initial meeting with a BS, 2) an MRI for staging, 3) a biopsy on a second new but less suspicious group of calcifications, and 4) likely a lumpectomy followed by radiation. I was told that the MRI could take a couple of weeks ?????

I have very dense breasts and I am very concerned about potential invasive cells (or worse, a mass) lingering around and not showing up on the mammo, but the doctor seems extremely confident based on the core biopsy that was done on the first group of 1cm calcifications that it's not invasive. How much can you learn from one biopsy? She also said that a mastectomy would be very unusual treatment, assuming the MRI and next biopsy come back fine.

I have three questions:

1) I'm wondering how whether its unusual to fine IDC (or other) at some point after an initial DCIS/LCIS diagnosis;

2) Why would the pathology report recommend an MRI for staging? Aren't DCIS and LCIS always considered stage 0? Or would this be because they need to rule out invasive cells in order to confirm Stage 0? Do all DCIS/LCIS patients have an MRI?

3) Would invasive cells always show up on MRI, or are there cancers that do not show up on MRI?

Thank you in advance! What a blessing to have such an amazing network of people from which to gain thoughts and feedback!

Kim

Each_day_2018

First of all, so sorry you are here!

I don't know if I can answer all of your questions correctly, but I will answer them based off my own experiences and understandings.

1) I'm wondering how whether its unusual to fine IDC (or other) at some point after an initial DCIS/LCIS diagnosis; For me, my lump of IDC was found and during surgery, they found areas of DCIS and LCIS. From what my surgeon explained, these are tiny areas that have not broken out of the cell and become invasive. My understanding is that the DCIS/LCIS is the first step and as it grows, it invades the surrounding tissue to form a lump. They could find IDC after surgery, but if the largest amounts they are finding is DCIS/LCIS, I would be comfortable with that diagnosis. Of course, with the dense breasts, I would really push for more testing and imaging. Just keep in mind, they won't have all of the information until after surgery, whether it is a lumpectomy or a mastectomy.

2) Why would the pathology report recommend an MRI for staging? Aren't DCIS and LCIS always considered stage 0? Or would this be because they need to rule out invasive cells in order to confirm Stage 0? Do all DCIS/LCIS patients have an MRI? Yes, I believe DCIS/LCIS are considered stage 0. Generally, they cannot stage definitively until after surgery. I would push for an MRI, regardless though.

3) Would invasive cells always show up on MRI, or are there cancers that do not show up on MRI? No. I was told my lymph nodes were clean based on imaging (CT scans and MRI). After surgery and biopsy of the lymph nodes, cancer was discovered in 3 of 4 of the lymph nodes removed.

I hope this helps!

AMLMom

Hello, thank you so much for your reply.   I'm really trying to get my head around this diagnosis and it is so helpful when others share their experiences.  I am so appreciative.  I am generally optimistic and feel lucky to have this diagnosis.

I am sorry that you are here too.  I hope that you are recovering well from your mastectomy and I hope your treatment is going well.

marijen

Each day, that’s scary that the CT and MRI didn’t detect the positive lymph nodes. I had an MRI yesterday and lumph nodes are supposed to be normal. Well that was one hour of relief! Are they going back to do an Axilla Dissection? To take all the lymph nodes? I had one and my report from yesterday states tere are still normal nodes after my ANLD. No comfort there.

AMLMom, I would get the treatment for DCIS only because you won’t know for sure until you have the pathology report after the lumpectomy

MDRR

Hi there

it's hard for me to know what is 'typical' -- reading everyone's experience makes me realize nothing may really be typical! My experience was an initial diagnosis of DCIS and I had both a biopsy and MRI prior to seeing the breast surgeon. The diagnosis was from these tests, but the pathology on my lumpectomy came back with a diagnosis of invasive, stage 1. so it had either advanced in the 8 weeks of testing, or they needed more tissue to completely diagnose. Either way, the diagnosis did unfold as the process went further. The main thing is to take each step as it comes, ask all the questions you need to ask in order to be comfortable, and make informed decisions. Keep us posted!