ILC surgery

lola12
lola12 Member Posts: 127

Hi, my partner is having surgery this week and she is very positive. Its me thats extremely worried about what lies ahead. So far, from core biopsy we know its about 1.4cm ILC, Bloom score 7 due to 3/3 for tubule formation. I thought ILC didnt have tubles? ER and PR positive, HER2  and BRCA neg. We do have a small suspicious area .4mm in the same quadrant, so are doing lumpectomy and SNB. The docs give her an excellent prognosis, but why am I still so worried? I have read so much, maybe too much, but ILC seems to be sneaky but very slow on the comeback? I just need some ILC friends I think. I would be lost without my partner and worry worry that ILC is going to take her away from me. I want to be positive but still worry so much. Wish us luck with the surgery on Thursday!

Comments

  • rreynolds1
    rreynolds1 Member Posts: 450
    edited September 2010

    Hi Lola,

    Her situation sounds a lot like mine except that she is probably younger.  ILC is more common in post menopausal women and tends to be slower growing and difficult to find because it can be easily missed in a mammo.  I'm 1 1/2 years out and doing great.  I had a lumpectomy.  ILC forms in a tubular rather than a round shape which is why we can miss it in a self exam.  I also had 33 radiation treatments which weren't that bad and I now take Arimidex to control the estrogen balance issues.  I will take that for at least 5 years.  If she is younger, they may give her tamoxifen.  If it isn't in her lymph nodes (they will check that out as part of the lumpectomy) she may not need chemo.  If she is node negative, as for the OncotypeDX test to see if chemo is necessary.  I did not have chemo.

    It sounds like she is on her way to being cancer free.  Try to relax and take one step at a time.

    Roseann

  • hlya
    hlya Member Posts: 484
    edited October 2010

    Sounds like a good prognosis of her,  most of ILC are like that.  Don't think you should worry too much.

  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited October 2010

    I'm wishing the best for you two on Thursday!

    Your worries and concerns are very understandable.  It's a shock to both of you.  It's a good thing that she is facing it with a positive attitude.  That was the way I faced mine and just accepted that I would have a lot of treatment to go through.  Since I was the patient and not the caregiver I can only imagine what you are going through.  I'm sure it's hard to be on the "sidelines" and wanting to help.  Your support, love and concern are going to be wonderful for her.

    It sounds like they were able to catch this early which is great.  All too often ILC is not detected until later stages because it is often missed on the mammo.  After she is through this then followup survellieance should include MRIs which do a better job of seeing any new ILC.  I'm not sure what the follow up routine is for an early stage but something like alternating mammos and MRIs seems reasonable.

    The prognosis sounds very good.    

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2010

    lola-----my mom had ILC many years ago---had lumpectomy, radiation, and tamoxifen for 5 years, and is now a survivor of 24 years in November. I'm so happy to be able to say that she is still doing great at age 81. Hope good news like that gives you hope.

    Anne

  • 300beacon
    300beacon Member Posts: 22
    edited August 2013

    I was called back for a second picture on the right side after my annual mammo. I have been getting mammo religiously for years. (I am 55).  A biopsy confirmed BC. I had an MRI which really magnified things. I had a 6x4 cm of LCIS. I could feel NOTHING.  I had a mastectomy and inside that flat mass was .7mm ILC. SNB was clean. My Oncotype score is 18.  No chemo, no rads.  Am on Tamoxifen now.  My BS said LCIS was growing in there for 8-10 years!  Never caught on a mammo before this? I was called back one other time about 5 years ago but after 2nd picture taken, they said I was good to go. In reality it should have been caught back then.  I worry every day it will show up in the other breast but my BS did not recommend removing the other breast.  I just try to move on the best I can. I am undergoing breast reconstruction and will be getting a nipple on Nov. 16th and tatoo of the areolo will be done in January. I was want to get adjusted to the new normal and move forward.  I guess getting off this discussion boards would be a start.

    I think your partner will be fine. My oncologist and BS said LCIS/ILC is probably the "bette" type of BC to get. Very slow growing and responds very well to hormonal treatment. Chemo does not help much unless the Oncotype score is high.  Best of luck and try not to worry.  I know that is hard to do. 

      

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