Any triple negative ILC out there?

SoutherMother
SoutherMother Member Posts: 111
edited February 2019 in ILC (Invasive Lobular Carcinoma)

I had IDC breast cancer in 2007, stage 1 but had a lesion in spine that was suspected of bc.  In 2008, I was dx with Thyroid Cancer, early stage.  Now, I am waiting for a treatment plan after a biopsy on a lymph node.  There are several nodes involved.  Including the deep ones.  I can't find anyone that has had ILC with triple negative receptors.  Please let me know if you are the same or have heard of anyone with the triple negative. 

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited October 2014

    SoutherMother,

    I have a close friend with ILC who initially was diagnosed ER/PR-.  This is unusual for ILC and later she had her tumor tissue tested by another lab and was found to be 80% ER+.  You may want to double check tests.

    Terri

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  • SoutherMother
    SoutherMother Member Posts: 111
    edited October 2014

    thanks IBC mets, I did get Moffitt to take a look at them too. They concurred the diagnosis.

    Michelle

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  • lindahm
    lindahm Member Posts: 2
    edited February 2015


    I was just diagnosed with pleomorphic triple negative ILC.  I had a lumpectomy and SNB 2/18/15.  I am waiting for the biopsies from the surgery and lymph node.  I understand it is extremely rare.  Have to wait for my biopsy results before deciding treatment.

     

    Linda

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  • SoutherMother
    SoutherMother Member Posts: 111
    edited February 2015

    There isn't much research to work with because this is so rare.  My MO said he had never treated a triple negative ILC (pleomorphic).   The good news thus far is the swollen lymph nodes have shrunk completely in response to my first regimen of neo-adjuvant chemotherapy (A/C).  Currently, I have one more Taxol/Carboplatin treatment before my mastectomy.  At that time I will know more from the axillary lymph node dissection (ALND).  Please keep us informed on how you are doing and what will be your treatment plan.   Dr Francis Collins, director of NIH, spoke on C-SPAN about cancer research and treatments.  He likened the latest approaches of chemo treatment for "virile" cancers to what they learned from treating AIDS.  When they found a good drug to work with AIDS they were disappointed to see the results didn't last long.  It wasn't until they started coming at AIDS with three different medicines that they were able to keep a durable response.  I don't know if he meant three different medicines at one time or if he meant over a span of time.  My MO thinks he meant over a span of time.  Hoping not just for a good response to chemotherapy but a durable response as well.

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  • lindahm
    lindahm Member Posts: 2
    edited February 2015

    Pathology showed lymph nodes clear. Need re-excision because one margin was not clear. Awaiting decisions on follow-up treatment. Will post when I find out

    Linda

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  • SoutherMother
    SoutherMother Member Posts: 111
    edited February 2015

    Yeah!  Clear lymph nodes is great news.  Thanks for giving an update.  It will be interesting to see what the dr. recommends.

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  • treelilac
    treelilac Member Posts: 245
    edited April 2015

    I have triple negative ILC (my second diagnosis)! Sorry my profile is incomplete so not showing.

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  • SoutherMother
    SoutherMother Member Posts: 111
    edited April 2015

    Hello TreeLilac,  I have a pleomorphic lobular triple negative breast cancer.   I would be happy to compare treatment plans or concerns.  I am getting ready to have a BMX and then radiation.  I'm a little nervous about the TE's and getting radiation treatment.

     

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  • treelilac
    treelilac Member Posts: 245
    edited April 2015

    Pleomorphic lobular TN is exactly what I have. I read many journal papers but cannot draw useful conclusions out of them. I kinda gather from my reading that the treatment focus should be on the "lobular triple negative" part rather than the "pleomorphic" characteristics. The question next then is whether the treatment should be more based on the lobular carcinoma or more based on the characteristics of triple-negative (regardless ductal or lobular one). Papers that are all about triple-negative would deem the lobular kind as one of the sub-types and say the outcome is less than optimal compared to others with the same regimen. Papers that are about clinical trials would see triple-negative as one quality of breast cancer and compare triple-negative collectively (ductal + lobular together) to other types of breast cancer (++-, --+, etc). So it's hard to derive a conclusion what regimen really works best for us. My MO suggested AC (4 cycles) followed by T (4 cycles). But she also thought surgery is the first line of defense for me.

    Compared to everything else we have to go through, I felt TE was not as bad (from my memory). It is icky, plus the drains, but livable. It also matters for the overall experience that your PS is compatible with your personality, preferably someone compassionate and who has lots of references from cancer patients. I kept myself occupied mentally and physically whenever possible. I didn't need much of the pain medicine provided at all. I remember the 2-step approach (TE and switch) is better off correcting the radiation effect on reconstruction to some degree but I didn't use radiation last time. My current MO said the technology has improved a lot in the past 5 years in terms of radiation therapy though. Must look at the positives! :)

    I went to Gainesville for three years of schooling--miss the days of shorts. :D


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  • Gohan1983
    Gohan1983 Member Posts: 62
    edited December 2015

    It's very interesting thread. Genomic profile of ILC TNBC differ dramatically from its IDC counterparts. First and foremost, it doesn't exhibit expression of basal-specific cytokeratins 5,6,14 and EGFR. Most of them has intermediate and low nuclear/histologic grade in opposite to basal-like IDC, which is almost always grade 3 and Nottingham score = 9. I reckon none of TNBC ILC belongs to Basal1 or Basal2 subtype, rather to IM or Luminal AR

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3017713/

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  • SoutherMother
    SoutherMother Member Posts: 111
    edited December 2015

    Thank you Gohan1983 for the link and information. I will have to take a little time from my holiday schedule to read the information.

    I also wanted to add to this topic an update for anyone else with triple negative pleomorphic lobular breast cancer. I had two different regimens of chemotherapy. The A/C worked the best of the two regimens. This was evident in the shrinkage of the swollen lymph nodes The Taxol/Carboplatin didn't finish off the last of the cancer. Nor did the radiation treatment to axillary lymph nodes. A swollen lymph node required a follow up biopsy where two different breast cancers were found. Hormone positive IDC and pleomorphic lobular were found in two lymph nodes. A doctor visit after the Christmas holiday will be when we decide the next step. If anyone has had success with treatment of triple negative pleomorphic lobular, please let me know . I did have a PET scan and it showed no tumors. We are hoping these are just fragments that are almost dead or dying.

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  • CinderellaNC
    CinderellaNC Member Posts: 36
    edited December 2015

    this is all very interesting to me because I have never read of anyone else having triple negative ILC on the discussion boards. Even posted once asking about it on the triple negative thread. I was told by my surgeon that I was a very special person to have triple negative ILC . You never want to be that special when it comes to a medical or health issue. Anyway, I had a bilateral mastectomy on November 10to complete my treatment. Opted for the mastectomy over a course of radiation. I had four rounds of TC for my chemo course. I wonder sometimes if the ILC triple negative is inherently more serious than IDC triple negative but in the long run it doesn't matter because like everyone with breast cancer or cancer you just have to treat it as best you can and hope for the best.. I was really glad to have found , though, that there is a group of others out there that I can identify withtotally. I should rephrase that I am never glad that someone else has been diagnosed with cancer but I am thankful for the knowledge, advice, wisdom and support that others share on these discussion boards. It is helpful and appreciated. I will continue to look for any other Information anyone could put out there on triple negative ILC. All of you take care on your treatment road.

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  • Gohan1983
    Gohan1983 Member Posts: 62
    edited December 2015

    In fact, we can divide all triple negative carcinomas to 6 different molecular subtypes: basal1 or BL1 (IDC G3), basal2 or BL2 (IDC G3), mesenchymal and mesenchymal steam-like(IDC with metaplastic pattern like sarcomatoid or squamous cell breast carcinoma, low grade metaplastic cancer, adenoid cystic breast cancer), immunomodulatory or IM (medullary breast cancer), Luminal AR or LAR (IDC G1-3, apocrine and maybe triple negative lobular cancer). Each of them has different clinical course, response to systemic treatment and prognosis.

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  • SoutherMother
    SoutherMother Member Posts: 111
    edited December 2015

    Cinderella NC, thanks for joining this subject. I have pleomorphic lobular (trip neg) which is different from lobular triple negative. From what my oncologist told me, lobular is slower growing and pleomorphic changes rapidly

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  • Gohan1983
    Gohan1983 Member Posts: 62
    edited December 2015

    Triple negative ILC is very rare, even pleomorphic subtype which most often presents Luminal B-like profile.

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  • yellowlab88
    yellowlab88 Member Posts: 3
    edited February 2016

    Hi All, I was just diagnosed with triple negative ILC after my surgical biopsy. I have a second surgery scheduled on 2/24 to remove the sentinel lymph node as well as additional margins since one side of my lumpectomy was less than 1mm. I'm 45 with no history of breast cancer in my family and have two elementary-aged kids and own my own business. I am scared and looking for some community.

    I submitted my spit for genetic testing last week and hope to get those results within 3-4 weeks. My first meeting with the oncologist is scheduled for 3/8 and I'm anxious to hear what she recommends for me going forward.

    Thanks in advance for any and all advice/reassurances!

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  • grandma3X
    grandma3X Member Posts: 759
    edited February 2016

    I'm not triple negative but just saw this link posted on one the other threads and wanted to share it:

    http://www.healio.com/hematology-oncology/breast-c...

    The FDA is fast-tracking this because it has been shown to be effective for metastaticTNBC.

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  • SoutherMother
    SoutherMother Member Posts: 111
    edited February 2016

    Grandma3X, thank you so much for this link. Your timing couldn't have been better. I am seeing my Onc this afternoon because I have another large swollen lymph node where my cancer has come back. I am starting my research on this now. Thank you 3X

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  • Numb
    Numb Member Posts: 432
    edited February 2016

    recently diagnosed ILC and schedule for a lumpectomy next week.  Just wondering if it is better to have Mx and then be sure it won't come back

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  • SoutherMother
    SoutherMother Member Posts: 111
    edited February 2016

    Hi Numb! That decision really is best determined by you and your doctor. They say the ILC can mirror itself in the other breast. If you have any family history of bc in your family, I would weigh towards a mastectomy. If you are under the age of 50, I would weigh towards a mastectomy. This advice comes from my experience of having breast cancer more than once and more than one kind. Questioning what you should do is normal but please trust your gut.
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  • cider8
    cider8 Member Posts: 832
    edited February 2016

    My aunt was recently diagnosed with a second BC primary of pleomorphic ILC. She had a mx and was started on a different AI when her MO called to say the ER+ on final pathology is wrong and that it's actually ER-, so triple neg. Initial biopsy was ER+. Now chemo is on the table and I so very much do not want her to have chemo!! I suggested a second opinion based on the error. Then my own doc suggested (I mentioned it in passing at a checkup) second opinion based on being so rare. You can see from my signature I am familiar with rare! I had no idea ILC is rarely triple neg. I'm glad to find you all. I go with my aunt to appointments, the next one to discuss triple neg and chemo. We have an NCI facility to consult for second opinion. I'm glad to go in a bit prepared

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  • cider8
    cider8 Member Posts: 832
    edited April 2016

    I need to update the results from my aunt. Apparently she had mixed triple neg ILC AND ER+ ILC. So she is getting 4 rounds of CT and considered ER+. Her margins were great--something like 2cm or more. It's still concerning and confusing, though.

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  • Janhope
    Janhope Member Posts: 3
    edited July 2016

    I was diagnosed with 2 different tumors. Both ILC. One was grade 3, pleomorphic, TN. The other not TN.

    I am stage IIB. MX right breast. Treatment is TC.

    I met with 3 different onc's and not one of them told me this type of BC is rare, so I am in shock a little. And I'm hoping I'm on the best chemo, as I've noticed most patients' chemo is AC/T. Janet

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  • Numb
    Numb Member Posts: 432
    edited July 2016

    I am ILC, triple negative, pleomorphic.  I figured out for myself that this is very rare due to the fact that I couldn't find anyone else on this forum with it.  I am sure you are on the best chemo for you and is taking into account that you have another type as well.  I wish you every success with it.  I am on AC + T and it seems this is the standard chemo dished out to a lot of women regardless of the type of cancer they have. 

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  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited July 2016

    ILC grade 3, pleomorphic, TN.

    Me, too.

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  • SoutherMother
    SoutherMother Member Posts: 111
    edited July 2016

    Welcome to the Pleomorphic ILC Triple Negative world, Ladies. I had great success in shrinking the cancer in my lymph nodes with Adriamycin chemotherapy. We haven't found a chemo since then that showed that much success. I have just started an immunotherapy that will get joined with a chemotherapy later this fall. It is called Opdivo. FDA hasn't approved it yet for us. My Oncologist had to ask the manufacturer to give it to me for "compassionate reasons". The appealworked and am keeping prayers going and fingers crossed that it helps the immune system wake up. I don't post much on the boards but wanted to let you know my treatment since this is such a rare breast cancer.

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  • JohnSmith
    JohnSmith Member Posts: 651
    edited July 2016

    SoutherMother.
    I really hope you get a shot at Opdivo (Nivolumab). I have a couple Melanoma and Lung cancer friends who failed all conventional therapies and achieved durable remissions using Checkpoint Inhibitor immunotherapies like Opdivo and/or Keytruda, with essentially no side effects.

    You have a forward thinking Oncologist to pursue the Immunotherapy approach. I love that.
    I'm not aware of anyone with ILC using Immunotherapies, so you'd be the first. (Actually, I know someone who is Stage 4 ILC who recently went to Germany for PD-1 and CTLA-4 checkpoint inhibitors, as well as peptide vaccines, but it may be too early to know her response rate).

    If they deny "compassionate use", there are over 250 Clinical Trials exploring breast cancer Immunotherapies, a couple dozen trials are dedicated to Opdivo, which I wrote about in this thread: "Immunotherapy drugs for breast cancer". Five of them are based in Florida.

    When it comes to Immunotherapy, a major premise that determines response is mutational burden. In other words, the more genetic mutations you harbor, the better chance you'll respond to Immunotherapies.
    Does pleomorphic ILC (or Triple Negative ILC) have more mutations than classic ER+ ILC? If so, they might respond more favorably.
    Please update us on the Opdivo decision. (I'll add this thread to my "Favorites").

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  • SoutherMother
    SoutherMother Member Posts: 111
    edited July 2016

    John, I don't know the answer to your question about which ILC has more mutations. I will check with my Onc or Pathologist and get you the answer.

    I am one week in and haven't noticed any bad side effects (slight cough though). I am actually feeling stronger.

    Michelle

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  • JohnSmith
    JohnSmith Member Posts: 651
    edited July 2016

    Great Michelle! Side effects can be quite different than conventional therapy.

    There's been some questions about how challenging it is for imaging to accurately detect ILC lesions (as pointed out by some with ILC mets to GI/Abdominal area). I'm not sure if that has been an issue with you, but if it has, what are the diagnostics tools (Imaging or Liquid biopsy, etc) being used to measure Opdivo therapy success? This is a topic that I hope is addressed at the ILC meeting in Sept.

    If you have questions about side effects and want to talk with others on Opdivo, the cancer Immunotherapy group on Facebook was created to allow patients to discuss their journey. www.facebook.com/groups/TheCancerCure
    Feel free to join.

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  • Purplegurll
    Purplegurll Member Posts: 135
    edited September 2016

    Wow, I just stumbled across this thread and here I was wondering if I was the only one with this type of cancer. I was told two years ago that my cancer was triple negative combination of IDC and ILC, but my oncologist now refers to it only as TN ILC. I have mets to spine, arm, chest and neck lymph nodes. I am presently participating in animmunotherapy clinical trial. Good to "meet" all of you.

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