DCIS with PNO(i+)

Motheroftwo36

would like to hear others diagnosed with DCIS but lymph node negative except positive for Isolation Tumor Cells. My oncologist is just about treating me like I have invasive cancer. Taking about chemo and removing ovaries. I'm 33

Beesie

Whoa. That's unusual.

First, Isolated Tumor Cells are node negative. When ITC are found in conjunction with DCIS, it is often assumed that the cells were misplaced into the nodes by a surgical instrument. The other possibility is an occult invasive cancer. Has your breast tissue been sent for a second pathology review to ensure than no invasive cancer is present? If that can be confirmed, then it is more likely that the ITC are simply the result of cell displacement.

Second, even with the known presence of invasive cancer in the breast tissue, ITC would be node negative. And invasive cancer and positive nodes does not necessarily mean chemo. With micromets to the nodes (micromets being larger than ITC) or up to 3 fully positive nodes (more than just micromets), the decision on chemo is usually based on the Oncotype test, which looks at the genetic make-up of the cancerous breast tissue. Obviously since no invasive cancer was found in your breast tissue, you can't have an Oncotype test done, but with DCIS and only ITC, the recommendation for chemo seems inconsistent with treatment guidelines and normal practice

I would strongly suggest a second opinion.

And FYI, this staging document explains that ITC are considered node negative (see the area I highlighted in red): https://cancerstaging.org/references-tools/quickreferences/Documents/BreastMedium.pdf

Meow13

Beesie, couldn't she have the dcis oncodx test? Would that be of value in her case?

Beesie

Meow, I thought about that too but it is a different test for a different purpose - it determines the need for radiation (i.e. the risk of a local recurrence) vs. the invasive cancer Oncotype which determines the need for chemo (i.e. the risk of a metastatic recurrence). The Oncotype DCIS includes an assessment of only 12 of the 21 genes that are in the invasive cancer Oncotype.

While the results would provide an indication of the aggressiveness of the DCIS, that does not necessarily translate to aggressiveness of any related IDC. When I had DCIS-Mi, my DCIS was grade 3 with comedonecrosis, which is as aggressive as it comes (the Oncotype DCIS didn't exist at the time, but they would never have done it for my diagnosis because it was so obviously at the high end of the scale) whereas my tiny IDC was grade 1.

Motheroftwo36, one other thought for you. Do you know what level of testing was done on the ITC? Perhaps you can have another pathologist look at the ITC in the nodes? Sometimes very specific staining can be done to determine the presence of the myoepithelial layer, which is a way to distinguish between DCIS cells and invasive cancer cells. I don't know that this can always be accurately done with ITC, but before embarking on chemo and removing your ovaries, I would think that you want to do everything possible to know for sure that you have an occult invasive cancer and not just pure DCIS with a surgeon's error (misplacement of cells into the nodes).

Motheroftwo36

I am actually going to Mayo Clinic this week for second opinion. I already received the 2nd review of my tissue but it doesn’t appear they did additional testing. Just looked over the slides. They came to the same conclusions so I am interested to see what the oncologist says. I have high grade comedo DCIS. It was 3cm and I have cancerization of my lobules. They used a cytokeratin immunostain for lymph nodes. The initial biopsy with additional staining couldn't rule out if it was invasive.

My oncologist is basically saying he knows it’s invasive because of the ITC.

Motheroftwo36

Beesie

Excellent that you are already set up for the second opinion at the Mayo Clinic!

Interesting that on the breast tissue the pathology report confirms "preservation of the myoepithelial cell layer", indicating that the cells are DCIS and not IDC, but the same testing was not done on the ITC. It could be that the amount of ITC is so small that this testing can't be done.

Let us know how it goes at Mayo.

Motheroftwo36

thanks for your help and insight! I’ll let u know soon

Meow13

good luck hope things go well

marijen

Hi Motheroftwo36,

I am one of the few here that only had DCIS with no primary tumor found (occult) and one positive node out of the 12 removed. I had a right breast lumpectomy with an Axilla dissection. I found the enlarged node (4.5cm) and immediately scheduled an overdue Diagnostic Mammogram. Same day, they did a biopsy of the DCIS (less than 1cm) and the one node which came back malignant. That was over four years ago. After CT/PET and Breast MRI that all came up negative except for what they had already found, I was started on Femara the following week. They wanted to shrink the enlarged node and I waited nearly 7 months for surgery. The first 3-4 months the node did get smaller to 2.5cm - this told my MO and BS that the Femara was working. My dx was ypTX N1, ER+90, PR+60 HER2-. As it turned out I had 3mm of cancer cells in the one node. BS said that amounted to thousands. I declined chemo and it was agreed by my breast team that it was not a good idea for me, thank goodness. I am so glad that I didn't have chemo or a mastectomy. After three surgeries in all, two for margins on the DCIS and healing, I took the full 35 days radiation including 5 boosts. Since then I have had many tests and scans and I remain NED (no evidence of disease). I continued the Femara for over two years from my dx, but finally had to quit due to eye problems and allover body pain. Yes there are estrogen receptors everywhere, in the eyes, brain, my memory took a hit there.

Their explanation of how I had one positive node was that maybe one cancer cell from the DCIS made it all the way to my axilla. Or, the Femara killed what might have been a tiny tumor that couldn't be seen on imaging. I feel fortunate that it was no worse than that.

I'm glad you are getting a second opinion and Mayo Clinic is a great place to get it. I realize you are much younger, I am on my way to 70. But it seems like it might be overkill at this time to have chemo and your ovaries removed. There are many many future problems and side effects with those procedures. You don't have to rush into anything. I don't know how much research you've done but it's always better to be informed before making those decisions.

Please keep us updated on the Mayo opinion and let me know if you have any questions. Here's hoping for better news!

Motheroftwo36

it’s taking me a long time to update this post because I wanted to wait till I met with my oncologist. The Mayo Clinic recommended tamoxifen only. They said even that Is considered aggressive. I want to request my tissue to be sliced thinner though to make sure nothing is missing. I’ve been having issues with getting in touch with my local doctor and it has been very frustrating. Glad I got a second opinion.

Beesie

That makes more sense.

Normally Tamoxifen is not recommended after a BMX for DCIS, which is why Mayo are saying that taking Tamoxifen would be aggressive. Tamoxifen alone (or an AI for a post-menopausal patient) is likely the same treatment recommendation that someone with nodal ITC and a small ER+/PR+ invasive cancer would be given, so it seems like the appropriate treatment for your diagnosis.

Read what Dr. Susan Love has to say about a diagnosis like yours: https://www.drsusanloveresearch.org/ductal-carcinoma-situ-dcis

Look at the last question at the bottom of the page, "My pathology report showed extensive DCIS. It also looked like I had micro-metastasis. What should I do?" She makes the point, as I did, that most likely the micromets was caused by cell displacement during surgery and that a second pathology assessment should be done by a specialist in breast pathology. She says that "if there are indeed multiple areas of micro-metastasis, some doctors would recommend chemotherapy because there would be concern that an invasion had been missed." Not only did you not have "multiple areas of micro-metastasis", you didn't even have one, since you had ITC, which is smaller than micromets.

Motheroftwo36

thank you for your explanation and the link. A part of me wants to say no to the tamoxifen but I worry I would regret it. A girl I met that lives in my area had a local reoccurrence from DCIS after her DMX. It was stage 3. But she does have the BRCA gene.

Mayo doc said he has seen a correlation between biopsy time and surgery being several months out to having ITC in node. He suggests it could be caused from biopsy disrupting cells and making its way to lymph node.

I will feel better if my tissue is sliced thinner still showing no invasion. I wish this was more black and white! I hate taking medicine and I want to say no to it so bad

Motheroftwo36