Multifocal IDC

Rognteres

Like everyone else on this site, I recently found myself thrust into a situation where I am forced to learn a "foreign language", and learn it relatively quickly.

I went in for my my routine annual mammogram and was quickly called back for an ultrasound, biopsy and consultation with a breast surgeon.  I was found to have multifocal IDC. A subsequent breast MRI identified a 4th breast mass. Due to the multifocal disease I was referred to a genetics couns. and found out just a day before my scheduled surgery that I was positive for a CHEK2 mutation. I am E+, P+, my HERS2 was equivocal initally, but neg by FISH.

I underwent a bilateral mastectomy with tissue expander placement on 11/4/15.  Pathology came back identifying yet another breast tumor (for a total of 5 cancerous masses in one breast) and, of 3 sentinel nodes removed, one lymph node was clear, one showed micro metasasis and one macro mestatasis.  Stage 2 ~ Grade 1 Multifocal IDC

The breast cancer team has met to discuss my case but I have yet to meet with my oncologist or radiology oncologist. Those appts will take in place in over a week, just after my oncotype test results are expected to be back. She will discuss any chemo recommendations with me then. My surgeon has mentioned that they can either do a second surgery (axillary node dissection) or I can do radiation tx to the lymph nodes. If I elect to do the rad tx, the rad oncologist would like to also do some rad tx to the areas where the breast masses were as he believes the risk of reoccurance is far higher given the multifocal cancer. 

I was somewhat surprised that are not telling me what the recommended treatment is and giving me a "choice". There seems to be less hard data out there on multifocal breast cancer than other types. Has anyone had similar diagnoses? Your experiences?

SummerAngel

Have you had an Oncotype test done? That could help in making your decision about chemo. I think it's now being used for cases with 1-3 positive nodes. If not you might want to ask your doctor about that.

I'm not sure why the radiation oncologist believes your risk is much higher. I've looked at as many studies as I could find regarding multifocal (and multicentric) disease and found little evidence that risk of recurrence is higher just because of this. You may want to ask him what he bases his belief on.

Based on the NCCN guidelines (http://www.nccn.org/professionals/physician_gls/pd...), you should "strongly consider" having radiation to the infraclavicular and supraclavicular lymph node area and chest wall. It also notes, "Radiation therapy should be given to the internal mammary lymph nodes that are clinically or pathologically positive; otherwise the treatment to the internal mammary nodes is at the discretion of the treating radiation oncologist."

As you can see from my signature, I had multifocal disease (4 tumors) on the right side but negative nodes. Bilateral disease (also doesn't have a lot of hard data regarding recurrence) grade 1 stage 2 equivocal HER2 on both sides negative by FISH. No chemo or radiation.

muska

Hi Rognteres, do you mind my asking how many lymph nodes were removed and analyzed by pathology? I mean altogether, not just sentinel.

In my understanding which may not be correct, if they see cancer in one of the sentinel nodes they look at the rest of the nodes found in the removed breast tissue.

Rognteres

I don't recall any mention of other lymph nodes being tested either than the 3 sentinel nodes. I am sure that I will learn a lot more when I see the other specialists on the 24th. The wait is difficult for me....

Rognteres

The oncotype test is in the works and they are expecting to have results back when I see the oncologist, radiology oncologist and breast surgeon on the 24th.

Molly50

I tested positive for Chek2 mutation as well. I had a 2.1 cm tumor of IDC, DCIS in the nipple stem, extensive lymph vascular invasion and two positive nodes one with macromets of 1.5 cm. My RO recommendation was radiation to chest wall, axilla, intramammory nodes, infraclavicular and supraclavicular nodes. It's a lot of area to cover but I feel good knowing that they are being careful with me. I had a oncotype Dx of 13 so no chemo.

Glad you had a BMX. My genetic testing came back after my umx so I am having a prophylactic mx sometime in the next year.

muska

I had multifocal too: two tiny cancers - 9mm and 3 mm. During surgery, they tested two sentinel nodes, one of which was positive for cancer. After that, they tested axiliary nodes in the tissue that was removed and the "cumulative" results are in my profile below.

I am somewhat confused why they are offering you a second surgery for axiliary nodes dissection? I assume there were more nodes removed during surgery than just three? If that is in fact true, why can't they have the surgery specimen re-examined?Whatever the reason I would raise these questions during your next appointment.

Rognteres

During my surgery, the quick pathology or frozen section of the 3 sentinal nodes looked negative, so they did not remove any more lymph nodes during my mastectomy. It was not until the final pathology was done that we found out there was mets.

muska

I would say there were probably more lymph nodes in the tissues that were removed but probably they were not submitted for testing. If so you can ask to re-test if that matters for treatment decision. However, I am not sure the # of positive nodes matters for the tx decision. I would probably go for a second opinion in regards to radiation.