Diagnosed with 4cm ILC

IndyMom
IndyMom Member Posts: 9
edited October 2016 in ILC (Invasive Lobular Carcinoma)

I was diagnosed with Invasive Lobular Carcenoma (ILC) on 8/30/2016. Ultrasound and Biopsy confirmed cancer in at least one node.

Followed by MRI, CT Scan, and Bone Scan. MRI showed the tumor size to be 4cm. And one more node suspicious. Cancer has not spread outside the breast. (That was a huge relief). ER+/PR+/HER2-. Grade 2/ Stage IIB.

Treatment plan suggested : Surgery (BMX and Sentinel Node Biopsy) -> Chemo -> Radiation -> Harmonal Therapy (Tamoxifen, 10yrs)

So many questions and uncertainities. Just like everyone else I want to make sure I do everything I can to get rid of cancer, and prevent recurrence.

1. Sentinel vs Axillary? - The risks of lymphedema doubles with Axillary (10% vs 20%). As per the doctor, studies have shown that recurrence and survival rates are same when we do sentinel+radiation vs axillary. Cant make up my mind on which route to take?

2. Chemo or no chemo? - I know they'll have more data post surgery with genome tests. But should I do it or not in my case?

3. Reconstruction or not? - Since radiation is a must due to lymphnodes infected, reconstruction at the time of mastectomy makes sense at all? If done at a later date (post radiation) they obviously cannot save the nipple. Once again cant make up my mind...

4. What kind of reconstruction is most popular? Less risky? Easier to recover from? - I know implants are not permanent and need adjustments often. So I am interested in one of the FLAP reconstruction surgeries.

5. Oopherectomy - I want to be as worry free as I can. Want to get my ovaries removed. Any thoughts on this? Is it an overkill for my case?

Apologize for asking so many question in one post.

Thanks in advance.

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Comments

  • dtad
    dtad Member Posts: 2,323
    edited September 2016

    Hi there. So sorry you have to be here but welcome. I know you will find this forum both comforting and informative. To start you really don't know the whole picture/stage until you have your surgery. The chemo question will be easier to make if you have the oncotype testing. I had direct to implant reconstruction and I was very happy with it. It eliminates the TE's and fills and most times additional surgeries. I know there are a lot of decisions to make. It can be overwhelming! Good luck and keep us posted....

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  • JohnSmith
    JohnSmith Member Posts: 651
    edited September 2016

    Sorry you were recently diagnosed and had to join the group. Good questions, for a newbie.

    The Final pathology after the BMX will help guide your treatment options. Since Tamoxifen (Tam) was mentioned, I'll assume you are still pre-menopausal. Otherwise, an AI (aromatase inhibitor) would be a theoretical better choice since the BIG1-98 Phase III clinical trial determined AI's to be more efficacious than Tam for post-menopausal ILC women. For preM women, everyone is still waiting for the ILC vs. IDC subtype results from the large Phase III SOFT clinical trial. That trial will also answer if Oopherectomies (or ovarian function suppression) is warranted for preM ILC women. These SOFT trial results should be out within the next two years (I hope).

    The OncotypeDX test (or similar test like MammoPrint) may be offered to help answer the worthiness of chemo.

    The Reconstruction questions are beyond my area of expertise.

    Best of luck moving forward.

    One final thought. ILC is less common and historically has not been studied compared to the more common Ductal subtype. There are some unresolved questions about which therapies are best suited for the unique characteristics of ILC. With that being said, there has never been any clinical trials dedicated to ILC until last year. In the US, the University of Pittsburgh in Pennsylvania is probably the leader for ILC research. They recently launched the first ever ILC Clinical Trial, which is discussed here.
    The study is specifically designed for people like you - those who have been just diagnosed with ILC and have NOT had surgery yet. If you live near Pitt or have the means/desire to travel, it may be something to consider.

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  • Mixedfeelings
    Mixedfeelings Member Posts: 13
    edited September 2016

    so sorry that you joined us here but you will find some incredibly knowledgable men and women here. I can't answer all of your questions---my feelings were 'let's through everything you have at this and do all that we can to prevent recurrence/progression' ... But everyone has to make their own decisions with the help of doctors who specialize in BC. Radiation and implants often do not work well together --estimates for failure range from 30 to 50 percent, as I understand it). Flap procedures aren't the easiest but not totally horrible recoveries either. DIEP Flap would be the preferred surgery in lieu of Tram Flap. Tram procedures remove a portion of muscle, Diep flaps do not. Should you elect to have a Diep, I suggest using a micro vascular surgeon who has lots of experience. Surgery is long and the worst of the recovery is the first couple of weeks. I believe most surgeons support the sentinel node method these days. You can find lots of info online about the reasons/studies. Good luck!


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  • mary625
    mary625 Member Posts: 1,056
    edited September 2016
    with a cancerous node, you will need axillary node dissection. Yes, there is a high risk of lymphedema especially since you will be having radiation, but the treatment has me here five years later.

    I had delayed flap recon. I dont know if things have changed at present, but i was told that i could only have tissue expanders in at time of radiation. I did not have them placed as i was afraid of the discomfort. However there is supposed to be some benefit from having them during radiation so that the beam is less likely to come near the lungs and or heart. My delayed DIEP turned out beautifully despite radiation.

    With the node and tumor size, chemo sounds likely. I am doing well.

    Your situation sounds a lot like mine. I am
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  • Starlings
    Starlings Member Posts: 13
    edited September 2016

    I was just diagnosed with ILC on 8/8, and had 4cm lumpectomy on 25 August. Sentinel node was positive, but 9 further axillary nodes removed, all clear. Oncologist wants 4 rounds of chemo, but I'm hoping to avoid that. Currently waiting on my Oncotype score. I will have radiation and hormone therapy no matter what. I was initially told that I needed mastectomy, and was going to opt for own-tissue reconstruction due to the shorter lifespan of artificial implants. A second opinion gave me the option of lumpectomy, so erased some of my immediate concerns. So many questions and no clear answers... I'm still lost in the fog too. I hope you find answers to all your questions. xx

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  • IndyMom
    IndyMom Member Posts: 9
    edited September 2016

    Thanks for all your replies. Really gives lot of support hearing from others like me.

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  • BlueKoala
    BlueKoala Member Posts: 190
    edited September 2016

    My medical team are giving me the works: neoadjuvant chemo, mastectomy and axililary node dissection, radiation, tamoxifen + ovarian suppression.


    My surgeon says she prefers to do AND and not even bother with sentinel nodes with ILC, because she has see no too many recurrences even if the sentinel nodes are clear. She said lobular cancer cells are very sneaky. But, my tumour was also massive, and she was expecting nodal involvement anyway.

    My surgeon thinks I should have my ovaries removed, my oncologist would rather wait and see whether it is necessary. I'm seeing my genetic counsellor again soon. There's quite a bit of cancer hanging about in my family, and that will probably be the ultimate determinate of whether I have my ovaries and/or uterus removed.

    I had a single mastectomy, but my surgeon is expecting that I will have the other breast removed: her reasons were being younger (35) suggests that I have a predisposition to breast cancer (no genes identified as yet), ILC is slightly more likely to show up again in the other breast, and symmetry (I don't want a reconstruction).

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  • IndyMom
    IndyMom Member Posts: 9
    edited October 2016

    Thanks for all your responses! :-)

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