My mom has diagnosed with Pleomorphic lobular carcinoma..

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ruruchuang
ruruchuang Member Posts: 1
edited February 2019 in Just Diagnosed

Hello everyone,

In short words, as there aren't many information about the treatment of PILC, so I wonder what the latest treatment will be?

My mom was diagnosed as Medullary breast cancer at first before the mastectomy, and the doc was suggesting to have chemo for six months before the surgery bcause my mom's ER, PR, and HER2 all negative.. However, we read the researches on he internet, it all says Medullary is normally 3 negatives, and the prognosis is good! As well as my mom is 62 years old now, she's afraid that she could not handle the chemo therapy, so in the end we decided to do the surgery first.. The surgery went quite well! Nothing was found in the nodes or surrounding areas, and the examinations before the surgery was all good too.... By the way, her tumour was first found out to be 1.8cm and just in 2 months time it's already over 3cm.. growing quite fast...

Anyway, 2 weeks after the surgery which is now, the result shows the diagnosis is PILC... and when I google it, it shows a completely different story... very scary!! And there are not much informations on the internet either... so I wonder if there's any experts here, or who have diagnosed with PILC can share their experience on how it should be treated? Is the prognosis really that bad??? And why the diagnosis is so different from the beginning and after the surgery?

Thank you in advance for the help!!! Love from Taiwan

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  • Icietla
    Icietla Member Posts: 1,265
    edited August 2017

    Hi ruruchuang, and welcome to BCO, the best place on the internet for information, understanding, and support about breast cancer concerns. We are very sorry about your Mom's diagnosis and what you all have been going through, but we are glad you found us here, and we are glad she has you looking out for her about her care.

    Here is a link to a member discussion thread from our ILC topics section relating to Triple Negative Pleomorphic ILC. At the lower part of many members' posts, you will see (often abbreviated indications of) their own diagnoses and treatment histories. Please notice that it often happens that members who have had different diagnoses and treatments may have inputs (or remarks) to add to a discussion of other cancer types and/or treatment plans, so you may find members participating whose breast cancer and treatments have been a bit different from the indicated subject matter of the particular discussion thread.


    https://community.breastcancer.org/forum/71/topics/825314?page=1


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  • Icietla
    Icietla Member Posts: 1,265
    edited August 2017

    This post by member Numb tells with particularity her disease state and what treatments she had__

    https://community.breastcancer.org/forum/70/topics/848982?page=1#post_4835532


    If you mouse on her name Numb, you will go to her member profile page, where you can find links to any of her other posts that may be helpful to you.

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  • Icietla
    Icietla Member Posts: 1,265
    edited August 2017

    This post by member SoutherMother may be helpful. At the lower part of her posts is much information relating to her treatments__

    https://community.breastcancer.org/forum/71/topics/825314?page=1#post_4760944

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  • Moderators
    Moderators Member Posts: 25,912
    edited August 2017

    Hi ruru and welcome to Breastcancer.org!

    We're glad to see you've received some helpful responses here thus far. You may also find this blog piece from the main Breastcancer.org site helpful: What My Patients Are Asking: What Is Pleomorphic Lobular Carcinoma In Situ?

    We hope this helps and we look forward to hearing more from you soon!

    --The Mods

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  • Icietla
    Icietla Member Posts: 1,265
    edited August 2017

    The first (late 2016) diagnosis for member marias was Triple Negative ILC. Her profile page shows the types of Chemotherapy she has had to treat that.

    https://community.breastcancer.org/member/245071/profile

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  • Icietla
    Icietla Member Posts: 1,265
    edited August 2017

    Member Marymargarethope, whose Triple Negative ILC tumor was rather large (12 cm. at start of her treatment), seems to have had very encouraging results with Docetaxol.

    https://community.breastcancer.org/forum/72/topics/757916?page=186#post_4223141

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  • Icietla
    Icietla Member Posts: 1,265
    edited August 2017

    Beloved member Jodian72, may she rest in peace, was six months pregnant when she was diagnosed with Stage IV Triple Negative ILC. [ Understand, the selection and order of her Chemotherapy medicines would have taken into account her pregnancy.] She was first treated with Adriamycin and Cytoxan. After the birth of her healthy baby, she was treated with Taxotere and Gemzar (Gemcitabine).

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  • Ginagia1
    Ginagia1 Member Posts: 7
    edited May 2018

    I have this IPLC, in addition to Triple Negative Ductal Carcinoma.

    Honestly, I've only found one other person with this diagnosis.

    I had standard chemo, AC, then Taxol. My cancer grew on Taxol.

    I had one breast removed, 33 rounds of radiation, 3-4 mos of Xeloda as a preventative before stopping when liver lets was suspected.

    All scans missed the triple negative PLC, and it was ONLY found at mastectomy.

    I'm so angry because I WANTED a bilateral mastectomy and the surgeon told me Medicaid wouldn't pay for removal unless there was cancer in the other breast. IPLC was in the opposite breast, the surgeon felt he huge mass, as I did, but scans didn't pick it up. Now it's spread, and it's still not showing up in scans but my blood tests indicate it has metasticized to the liver, and tumor markers are up.

    I've been so frustrated with modern medicine. Every aspect of my care was botched, and not a single doctor would listen to me


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  • Numb
    Numb Member Posts: 432
    edited February 2019

    I was diagnosed with PILC in February 2016 and had 3 rounds of AC and 12 rounds of Taxol, also radiation can't remember how many rounds but it took 3 weeks, so must have been 15 rounds. The AC wasn't pleasant but I got through it. ILC is notorious for not showing up on mammograms but luckily mine did. I could feel nothing myself though and if it wasn't for a routine mammogram God knows where I would be today.

    Just got the all clear for 3rd year. Thank God.


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