Pleomorphic ILC

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  • Nkb
    Nkb Member Posts: 1,436
    edited August 2012

    Hmh23- I have had many normal mammograms over the years including Digital ones. None of the mammograms ever showed anything including the diagnostic mammogram and ultrasound I had in May when I felt a mass in my left breast. The GYN and the breast surgeon did not think the mass was meaningful and felt nothing they thought was worrisome. In December I felt a large mass in my right side and saw my GYN and the radiologist who thought it was a cyst, saw nothing on diagnostic mammogram or diagnostic ultrasound and told me it would be gone in a week. It wasn't and I had a biopsy which showed cancer on the right. Then I insisted on breast MRI and I was found to have multiple lesions on both sides and multiple lymph nodes. I wish I had insisted on a biopsy on the left side in May and I guess I was relieved to hear that a breast specialist thought was nothing and the ultrasound mammogram thought it was nothing. I do not trust mammograms at all now and will insist that my daughter has MRIs even if I have to pay for it.

  • Gitane
    Gitane Member Posts: 1,885
    edited August 2012
    Nkb,  What an interesting quote.  I've never read that.  The way I interpret it is a "metaplastic spindle-cell" component of the tumor indicates possible worse prognosis.  I don't think that would be missed by a pathologist.  If it doesn't say that in your pathology report, it's not there, right?
  • Nkb
    Nkb Member Posts: 1,436
    edited August 2012

    I'm not sure if it is on the path report, I'll read it again and then perhaps ask my MO. I'd like some good news, though and reading the pleomorphic description which I didn't notice the first time i read it many months ago,for all the other information on the path report completely freaked me out and depressed me.

  • Cindi74
    Cindi74 Member Posts: 363
    edited August 2012

    So there were a lot of posts on this topic in 2008, and then practically nothing.  I was diagnosed in late July, 2012.  Lumpectomy. At least one lymph note is involved.  Two regular and three small were removed.  Have not yet seen surgeon or oncologist for post operative followup.

    Some mention by surgeon to husband after surgery, chemo.

    One inch diameter plus removed.

     Almost completely recovered from surgery 10 days ago.  Am 75.  Have had wonderful life.  Have excellent support network.

    Curious if there are survivors of this kind out there. 

  • Summer_Girl
    Summer_Girl Member Posts: 69
    edited August 2012

    I was told my breast cancer is pleomorphic, but I haven't seen the oncolologist yet.  I had a segmental masectomy for 6cm  (which is a little more than a lumpectomy) with very positive results and clear margins, no nodes; it's been four weeks.   Prior to the surgery, I was told radiation and tamoxifen.

     I feel great right now, we'll see what the oncologist and radiologist say.

  • cindala
    cindala Member Posts: 23
    edited August 2012

    HI Laurie,

    Dr. Guiliano was my breast oncological surgeon, so glad you found him.  Question, is your diagnosis pleomorphic lobular carcinoma in situ or invasive?

    Cindala

  • nash
    nash Member Posts: 2,600
    edited August 2012

    I am five years out from my PILC and PLCIS diagnosis. I'll finish my Tamoxifen next spring, and am doing fine.

  • Cindi74
    Cindi74 Member Posts: 363
    edited August 2012

    Glad to hear from you.  Five years.  Encouraging.  So sorry you got it so young. Tomorrow,  I see the surgeon for post op and learn  of labs and probably go on to oncologist or rad after.  Thank you again.

  • nash
    nash Member Posts: 2,600
    edited August 2012

    You're welcome, Cindi. Good luck with the docs. This all gets easier eventually, I promise!

  • Hipline
    Hipline Member Posts: 195
    edited September 2012

    One year to the date of an all clear mammogram I was diagnosed with pleomorphic ILC. I found it myself after taking a hard fall on a water ski. I developed what I thought was a mass bruise in my breast and the doctors thought so too but 5 months later it would not go away and I had a biopsy. Dr said the mammo had likely not picked up the tumor for a few years due to my dense breasts. So now I say water skiing saved my life!

  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited October 2012
  • think_positive
    think_positive Member Posts: 18
    edited February 2013

    Does anyone know if Pleomorphic ILC is luminal A or luminal B?  Or are there other things which determine which it is?

  • toomuch
    toomuch Member Posts: 901
    edited February 2013

     ILC is usually strongly ER/PR + but I don't think that you can assume that Pleomorphic ILC is either Luminal A or B. I think that it depends on the individual tumor. My MO seems to think that mine is likely to be Luminal A (low oncotype)  but since there was no K167% done with my pathology, we'll never know for sure. Having said that, I've been on AI's for 2 years so far and I  know that my MO is planning to keep me on them for longer then 5 years. It seems that those with Luminal A tumors benefit the most from prolonged hormonal therapy.

  • Gitane
    Gitane Member Posts: 1,885
    edited February 2013

    I've not seen anything written that says that pleomorphic lobular is Luminal A or Luminal B.  I have seen research that called ER+ tumors with high proliferation levels Luminal B.  I've seen other research where only Her2 +  was Luminal B,  then there is gene research that describes a tumor with low ER and PR and high Her2 as Luminal B.  It seems to me that there is no standard definition for it.  Pleomorphic has been found in all those categories, I think.

    Edited to add that there are pleomorphic lobular tumors described on this site as highly ER+, low proliferation, Grade 1 and Low Oncotype, so go figure! 

  • Rdrunner
    Rdrunner Member Posts: 309
    edited February 2013

    Some pathologists feel lobular in general should not be grade in the same way other BC are. A few reasons that made sense to me at the time I read the articles.

  • think_positive
    think_positive Member Posts: 18
    edited February 2013

    Thanks for the info Ladies.  I have one more year to go on the antihormonals (currently Letrozole) and can't wait to be done.  I will have to wait to see what is recommended.

  • robin_in_SJ
    robin_in_SJ Member Posts: 46
    edited March 2013

    Hi, I'm newly diagnosed and found this forum about PILC.  On Friday I rec’d the results of a biopsy which indicates IPLC, the tumor is sm less than 1 cm, has estrogen and progesterone receptors and they are doing further testing on HER2.  I see the breast surgeon on Thursday.  I am waiting for insurance to approve request for an MRI of both breasts and hoping there is only 1 mass.  I want to get a second opinion but not sure where to begin.

    I am besides myself with worry because of the cancer and because I have gastroparesis, a condition where the stomach can’t break down foods and it takes 4x as long to digest. My diet is; juice, soups, fish, chicken with limited fiber and fat.  I’m often tired and have a constant upset stomach. I’m worried about how I’ll be able to deal with cancer when I feel weak already.  What I have heard is that surgery is the first course of treatment but I’m less concerned with surgery and more with side effects of chemo and radiation.  Also, because of the stomach issues I have had significant bone loss.

    I live in the Philadelphia area (SJ) and I’m thinking of going to U of Penn for my 2nd opinion.  That's where my gastroenterologist is located. Of course, I am open to recommendations! Should I go for the pathology report and surgery?  How to I address my concerns about chemo and radiation?  I like my breast surgeon but not sure about the rest of the team from Cooper Hospital.  Can I make an appointment with an Oncologist before the surgery? 

    It was good reading the forum over the weekend and hearing about so many of you who are doing well.

    Thanks!

    Robin

  • toomuch
    toomuch Member Posts: 901
    edited March 2013

    Robin - First take a deep breath. It's hard to not worry about everything. Did your BS send the tumor for the oncotype test? It's possible that chemo will not be recommended. I have IBD and I was pleasantly surprised at how the chemo blunted all my symptoms. So, sometimes chemo SE's can be positive!

    PILC is relatively uncommon so I think that getting a 2nd opinion on the pathology is reasonable. I did. I also had several MO and RO opinions. I have copied a link to the NCI designated cancer centers below. If you are going for a 2nd opinion, you may want to choose one of these centers. It all gets easier once you plan is in place.

    http://www.cancer.gov/researchandfunding/extramural/cancercenters/find-a-cancer-center

  • Cindi74
    Cindi74 Member Posts: 363
    edited March 2013

    Robin, your cancer seems small.  If it hasn't gone to the lymph glands, you may not have chemo.  Also sounds like a lumpectomy if it is only one spot.  Read the Breastcancer.org informative sites on scans, etc.  I had lumpectomy and A/C chemo and 12 weekly Taxol.  Not fun but doable, and I'm 75.  Visit several boards and pick a group for support.  There were 60 of us atarting chemo in Sept. and we have been together since.  Wonderful support.  Fatigue has been my worst side effect, but now that chemo is over,  I'm doing bettter.  Hugs

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