Sister just diagnosed ILC Stage 2 Need info. Confused and Scared

Hersister2016
Hersister2016 Member Posts: 7
edited November 2016 in ILC (Invasive Lobular Carcinoma)

Tumor Grade 1; 5 out of 9, The score is as follows:

Glandular/Tubular Differentiation: 3

Nuclear Pleomorphism: 1

Mitotic Count: 1

I am helping my sister who is 44 and located in Plano, TX. I am in Lawrence, KS and desperate to help.

She had suspected something was wrong a couple of years ago but all sonograms came back neg. and it was just this Jun-July that she demanded a more thorough scan because she had found a lump deep in her chest. As a result, lump was found deep in her tissue that then prompted an MRI... dense breast tissue is the reason they gave for why it was not coming up on sonograms for past 2-3 years. She was told had she not forced the Dr. to take a deeper scan over that area they would not have found it. Dr actually called her in tears to tell her and she was later told had they not caught it she would have been dead within a year.:(

We are rethinking her team because the doctors do not seem amenable to questions and tend to push her off. She started her journey in June/July, had Bilateral Mastectomy at Texas Health Presbyterian October 20th and they found extensive LCIS in one breast. At her follow-up appt. after surgery she was told the sentinel node taken was clear but the axillary node was positive??? for Metastatic Lobular Carcinoma. It was 1.0cm in size and almost entirely replaced by MLC, according to the path. report from her surgery on the 20th. The first doc said Ductal and now after surgery they are saying ILC.

Should she have her tissue sent to another pathology lab? How do we get another opinion?

We had been very hopeful it would be clear but now she is trying to figure out her next step during her recovery from surgery. Everything I have read points to some type of systemic treatment within 30 days of the surgery. There is so much information out there it is like trying to drink from a fire hose.

She is ER+ and PR+ HER2- and HER2 FISH-

MiB-1; Low, less than 5%

She is desperate to not undergo Chemo.

Are there any members who have done hormone therapy but no Chemotherapy?

She asked the surgeon if she could just have the nodes removed but the surgeon told her the risk of Lymphadema increases...I have read this as well but it seems like it is a low risk if the surgeon is very skilled... thoughts on this?

She meets with her Oncologist next week and i am trying my best to equip her with the right questions to ask during her appt. since she is recovering from surgery and very scared and everyone keeps telling her she has to get chemo. and she really really does not want to do chemo.

I need everyone with experience to throw me what you have because I need all the info!

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Comments

  • Hersister2016
    Hersister2016 Member Posts: 7
    edited November 2016

    Bumping

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  • Smurfette26
    Smurfette26 Member Posts: 730
    edited November 2016

    Hersister2016 I sent you a private message. Did you get it?

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  • Mixedfeelings
    Mixedfeelings Member Posts: 13
    edited November 2016

    if your sister is not comfortable with her team, she might want to make a change. Please be sure she is using a NCI hospital/favility that specializes in BC. In my view, her doctors should patiently answer all her questions. This is a difficult time for her, full of anxiety. That being said, it is not unusual to not see lobular on scans when you have dense tissue.wonderful that she has you for support. MD Anderson is not that far away....I have only heard great things about the breast specialists here. If she has to do chemo, please tell her it is not much fun but totally different-able. For me, it wasn't as bad as I imagined it would be.


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  • Hersister2016
    Hersister2016 Member Posts: 7
    edited November 2016

    Yes, Thank you Smurfette26, just sent response.

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  • Hersister2016
    Hersister2016 Member Posts: 7
    edited November 2016

    My sister lost her job right before diagnosis and had to get a plan in the Obamacare exchnage. She said many of her drs have remarked that she is lucky they are even seeing her because she has ObamaCare. Yes, they have actually used these words at her!

    She has also been given such a hard time about making appts and with offices trying to get payment up front instead of waiting after submission to insurance etc. She has had to push back almost every step of the way and advocate for herself by restating that she knows for a fact they need to submit to her insurance first etc.

    This has definitely been wearing on her.

    I have no idea if MD Anderson would even take her insurance under the ObamaCare exchange. I will ask her to call her and ask about her options since her team seems just awful and raises many red flags for me!

    Thank you Mixed Feelings!

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  • Optimist52
    Optimist52 Member Posts: 302
    edited November 2016

    Hersister, hi you are being a great support to your sister. She really should have an Oncotype DX test to determine the need for chemo. There's lots of info on this site about it and her oncologist should order it. She will certainly be prescribed hormone therapy. Best wishes to you and your sister.

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  • Hersister2016
    Hersister2016 Member Posts: 7
    edited November 2016

    THank you Optimist52, I am absolutely going to advocate for that test.

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  • Wicked
    Wicked Member Posts: 141
    edited November 2016

    ILC often responds better to anti-hormonal drugs than to chemo. Make sure your sister asks about the benefits of chemo and anti-hormonals as they relate to ILC specifically.

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  • mairew
    mairew Member Posts: 84
    edited November 2016

    If your sister is in Plano, she could consider UTSW Medical Center for second opinion. It is NCI designated. MD Anderson is great too but farther away.

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  • Hersister2016
    Hersister2016 Member Posts: 7
    edited November 2016

    Thank you Wicked and Mairew, I am asking my sister to make sure she puts whoever her Onocologist is in the position to explain WHY chemo would be necessary as one of her systemic treatments, specifically the medical reasoning and what benefit backed by research.

    My understanding is the least toxic option should be offered up first. I am also wondering after more research, if all genetic tests are run concurrently? ie- do they test for it all-HBAC, CDH1, etc.-do they screen for all of them or does she have to ask for it? She is not quite 2 weeks out from recovery and her meds make her very fatigued and groggy.

    Thanks Again,

    Rosa

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited November 2016

    UTSW is not on the exchange plans and I don't think MD Anderson is either.


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  • Wicked
    Wicked Member Posts: 141
    edited November 2016

    This is the test I had- http://www.ambrygen.com/tests/breastnext. Tests for 17 different genes with just a simple blood test.

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  • howtokillcancer
    howtokillcancer Member Posts: 1
    edited November 2016

    If she has a Dallas address she can use, she can try to go to Parkland. It has the same doctors as UTSW and even though it's busy, it's some of the best care in the area. I would give both UTSW and Parkland a call. Best thing to do would be to make sure you have all medical records available and if/when she has a new team to make sure you can have pathology slides sent to them for review. All the best.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2016

    I just wanted to share even though your sister is St. 2, she's got a good prognosis because she's not HER2+ and is ER/PR+, meaning her case should respond to anti-hormonal drugs.

    I think that MD Anderson might take Obamacare but it takes a long while to wade through the maze of red tape. My ex-husband had it, and he finally did wind up with an appt at MD, I think, but it took about 3 months (or maybe he didn't push it enough). He ended up not going anyway.


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  • Meow13
    Meow13 Member Posts: 4,859
    edited November 2016

    I did hormone only despite having an oncodx score of 34. I was er+ but pr-. I think pr - made my score come out so high. I had two 1cm tumors one IDC and one ILC, stage 1, no nodes involved. I have been NED for 5 years. I have had scares but I think I chose the right path for me.

    I was taking anastrozole and then exemestane, very effective drugs but has some unpleasant side effects. I had joint pain, severe fatigue and weight gain. I am off them now and feel good again.

    There is hope.

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