Second opinion tomorrow

Anonymous
Anonymous Member Posts: 1,376
edited September 2016 in ILC (Invasive Lobular Carcinoma)
Second opinion tomorrow
· Share on FacebookShare on Twitter

Comments

  • Wicked
    Wicked Member Posts: 141
    edited September 2016

    Extensive LCIS and ILC on the left, extensive LCIS on the right. MRI shows a 1 cm suspicious mass on the left close to the ILC and a 2x4 cm one on the right that is in a different quadrant from the LCIS, in addition to "too many areas of enhancement to count." Surgeon is telling me that I can't be monitored, so I'm left with BMX as my only option. I'm figuring the second doc will concur. Just wondering what questions I should be asking.

    · Share on FacebookShare on Twitter
  • Icietla
    Icietla Member Posts: 1,265
    edited September 2016

    Wicked, I am so sorry about your having more diseased areas, and just after you have undergone major surgery to save your breasts.

    To try to get some expectations as to near-term treatment, you might ask about apparent proximity of those diseased places to your chest wall; also, assuming modified radical mastectomy for the left, which type mastectomy for the right? Would there be tracer injection/s done at just the left side, or at both? Is it (or would it be) contemplated that your axillary nodes on the right side would be left alone? Of course, ask for OncotypeDx testing of the tissue known to be ILC.


    · Share on FacebookShare on Twitter
  • Chemist
    Chemist Member Posts: 33
    edited September 2016

    In case you haven't decided yet, perhaps my experience will be helpful. Before surgery, I had a large primary ILC tumor in my left breast. Biopsy of a suspicious region in my right breast revealed LCIS, but no true carcinoma. My surgeon advised me to only have the left breast (+ lymph nodes) removed, and to watch the right one carefully. I went ahead and had both removed anyway. Pathology showed extensive LCIS on the right side, but that's all, so lymph nodes were not touched on the right side.

    Long story short: I am SO HAPPY I had the right breast removed, in spite of the surgeon's recommendation. Now my right arm is protected for as long as I live--I won't have to face axillary node dissection on that side, with consequent risk of lymphedema, restricted motion, etc. And I don't know how I could have monitored the right breast effectively anyway--LCIS being so very hard to detect. And the extensive LCIS means that the right breast would have been at elevated risk for cancer.

    I'm curious: It sounds as if your LCIS is being detected via imaging, since you know how it's distributed. Is that true? Mine was not.

    Good luck. And good work, seeking a second opinion!!!!!!!!!

    · Share on FacebookShare on Twitter
  • Wicked
    Wicked Member Posts: 141
    edited September 2016

    Chemist, I had two areas of suspicious calcifications, one in each breast. Both biopsied and turned out LCIS. Only found the ILC on the left on excisional biopsy. When they excised the areas of calcs, they found LCIS all the way to the margins, so we know we have not gotten all of it. The second opinion doc advised that I could be monitored with twice yearly MRI. She also wants to biopsy the two suspicious areas in each breast, and do genetic counseling. I'm going to do all that, hoping that the stuff on the right is benign and I can keep the surgeon out of the lymph nodes on that side at least.

    · Share on FacebookShare on Twitter
  • Lisa123456
    Lisa123456 Member Posts: 56
    edited September 2016

    Chemist, my LCIS was detected by mammo (microcalcifications) and was seen by US. Then its size was determined by a breast MRI (2.5 cm). In addition, MRI picked up ALH in my other breast. So, yes, imaging can detect lobular neoplasia.

    · Share on FacebookShare on Twitter

Categories