ILC IN BOTH BREASTS - ANYONE ELSE

zenith4289
zenith4289 Member Posts: 170
edited June 2014 in ILC (Invasive Lobular Carcinoma)

My BS and Onc both tell me it is quite unusual to have ILC in both breasts at the same time.  I had BMX and am now going to have 4 treatments of AC and 12 weeks of Taxol. 

· Share on FacebookShare on Twitter

Comments

  • LuvMyLab
    LuvMyLab Member Posts: 82
    edited July 2010

    Hi Zenith.  I'm not sure about all this, I've just been dx with ILC.  Getting lumpectomy in 2 weeks then have to get 6months of chemo then radiation..  I'm so worried. 

    · Share on FacebookShare on Twitter
  • IwillBhealed
    IwillBhealed Member Posts: 160
    edited July 2010

    Yes i have it in both breast...

    · Share on FacebookShare on Twitter
  • Pawprint
    Pawprint Member Posts: 464
    edited July 2010

    Hi Zenith. I have ILC in both breasts. Just diagnosed June 10, 2010. Mastectomy of both breasts scheduled August 13th. Then I will be taking Arimidex. Doc has been running lots of scans. Found a tumor on my liver. Not sure yet if it is benign or malignant. Gene tests not back yet. I had complete hysterectomy in 1994. I have been on hormones, birth control pills before hysterectomy, then estrogen after that. I don't know how unusual it is to have ILC in both breasts like your doctor told you. Looks like a few of us in here have it in both breasts.

    · Share on FacebookShare on Twitter
  • JFV
    JFV Member Posts: 795
    edited July 2010

    I have in both breasts.  Weren't sure it was in second breast until they opened me up.  Actually chose double mast because of Ilc's reputation for "jumping" to other breast

    · Share on FacebookShare on Twitter
  • mlv2356
    mlv2356 Member Posts: 44
    edited July 2010

    Hi Zenith,

    I was originally dx with ILC in the right breast. We opted for a bilateral as preventative on July 12th.  Lo and behold they found a 4mm ILC in the left that did not show up on a CT/PET scan.  I am so glad we went aggressive with surgery.  I've read ILC has a 30-40% chance of occuring in the other breast once found in the original side.  Hope that helps,

    Michelle

    · Share on FacebookShare on Twitter
  • zenith4289
    zenith4289 Member Posts: 170
    edited July 2010

    Well it's good to hear there are others out there with bilateral ILC.  My right tumor was not found until I got a gammagram.  It was small but curiously 2 nodes on the right were positive while only one on the left was.  Anyhow has anyone had lymphedema?  It is going to be a challenge to get blood work and blood pressure.  I forgot and let a nurse take blood pressure on my left arm.  All the info on lymphedema says to tell techs to take pressure and blood on the "good" arm but I don't have a "good" arm now.  Just have to remember to speak up and let medical professionals know I am at risk for lymphedema on both arms. 

    Onc says i am not eligible to participate in any trials because of the rarity of bilateral ILC.

    · Share on FacebookShare on Twitter
  • DFC1994
    DFC1994 Member Posts: 163
    edited July 2010

    I had BC in both breasts but they were different types.my right breast was DCIS and my left was 2 tumors of ILC. My Doctors told me it was really rare to have 2 different types.I had a both breasts reomved and nodes from each armpit but for soem reason they allow blood to be drawn from my left arm but no blood pressure in each. So far I have had no issues with lymphedema.I get blood draws,iv's etc in my left arm.I heard you are not suppose to but I questioned this and my Dr said he allows it in mine due to a DVT in my right arm and a genetics clotting disorder that he would rather they not use the veins in my feet since DVT's are more prone to travel if you get one in your legs.I worry though each time i have to have blood drawn from my arm,its coming up next week again,my 6 month checkup with my ONC.

    · Share on FacebookShare on Twitter
  • zenith4289
    zenith4289 Member Posts: 170
    edited July 2010

    LuvMyLab - I hope you don't get anymore bad BC news and that your planned surgery, chemo and rads will erradicate this disease.  The anxiety is one of the worst SE.  I use meditation and ativan but still have "freak outs" 

    · Share on FacebookShare on Twitter
  • flopsy
    flopsy Member Posts: 365
    edited July 2010

    zenith,  I had ILC STAGE 3 with 5 LN+ in one breast.  Prophylactic BMX done and had 2 precancers in GOOD BREAST.  S, you can never be sure what is there until they take the tissue out.  Hope you are getting the info yu need.  All of us here depend on each other and we are here for you.  Sending thoughts and prayers for you.LOL,gin2ca

    · Share on FacebookShare on Twitter
  • kim2005
    kim2005 Member Posts: 49
    edited July 2010

    I think it can come down to personal choice for many on whether to do the double.  I really questioned three doctors on this before my left-side mastectomy.  They said chances were low that it would come back in the other breast.  I asked the old question "well if I was your wife, what would you advise?"  They all said to keep it and monitor it.  There are certainly pluses and minuses to keeping it though.  The breast MRI's each year and mammograms can still evoke those old feelings (i'm in my 5th year now).  Best wishes with your decision.  Either way you go, don't question it.  Its your body and your choice.

    · Share on FacebookShare on Twitter
  • mixin
    mixin Member Posts: 48
    edited August 2010

    I had ILC in the right and the MRI found DCIS in the left. I was lucky that the ILC was caught on a mammogram; at that time, the report said the left was "stable" so I was surprised when the MRI found it.

    Since both were really small, we decided on lumpectomies. The surgeon didn't get clear margins on either one, so he had to do them both again, finding both extended deeper toward the chest wall than he anticipated.

    I had 33 rads to both sides with only minor problems and have been on Arimidex for 3 weeks. My OncoType score was 19, so I skipped chemo and my CA 27.29 is 11.9. 

    · Share on FacebookShare on Twitter
  • zenith4289
    zenith4289 Member Posts: 170
    edited August 2010

    MIXIN - glad to hear there are more women out there with bilateral disease.  I had to do chemo and am facing tx #2 this week.  SE's have been somewhat managable.  Rads are (so far) not in my future.  I have pain in both upper arms but no lymphedema.  I get pain everyday so I am going to go to a special massage therapist.  Percocet helps but I would like not to have to rely on it. 

    Anyone else have pain in upper arms?

    · Share on FacebookShare on Twitter

Categories