multifocal ILC -- lumpectomy vs bilateral mastectomy

Toni_S
Toni_S Member Posts: 49
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Hoping to gather information from those with similar experiences.  I was diagnosed with multi focal ILC -- two instances in the same quadrant, one 10mm picked up on routine mammo and the second 4mm subsequently found on ultrasound. I had an excisional biopsy that tested positive, and then I had a lumpectomy two weeks ago along with sentinel node biopsy.  The good news was that I was node negative, the bad news was that within the lumpectomy tissue pathology found a 6mm tumor that was not picked up either on mammo, ultrasound or breast MRI done prior to lumpectomy but after the excisional biopsy.  Oncotype testing is being done, but I am struggling with what to do about surgery.  My breast surgeon recommends mastectomy, but says that since the new tumor was in the same quadrant I can opt for re-excision and another lumpectomy to get clear margins. 

At this point, I have no confidence that I know the full extent of my cancer -- if imaging did not pick up the 6mm tumor, there may be others also not seen.  I'm also concerned that imaging is not going to pick up tumors in my other breast since ILC hides in dense breast tissue and is often missed on imaging.  I am seriously considering  a bilateral mastectomy to get some peace of mind that I am doing all that I can to beat this disease.  Has anyone else been faced with a similar decision?  What did you decide and what advice do you have?

Thanks so much, this is such an overwhelming decision and if I don't get it right, there's no going back.

· Share on FacebookShare on Twitter

Comments

  • Gitane
    Gitane Member Posts: 1,885
    edited May 2011

    For all the reasons you have stated, I chose bilateral mastectomy.  Professionals I consulted felt mastectomy on one side was adequate.  However, I had no confidence in their ability to find cancer early.  I think each person has to decide how much anxiety they will be living with and decide accordingly.

    · Share on FacebookShare on Twitter
  • paml
    paml Member Posts: 81
    edited May 2011

    I agree with Gitane

    After 11 years of having regular mammograms, they still didnt pick up on my ILC until it was stage 3. A bi-lateral mastectomy was the right choice for me.  I have no regrets but everyone is different. 

    · Share on FacebookShare on Twitter
  • MaggieMc2
    MaggieMc2 Member Posts: 54
    edited June 2011

    I also opted for bilateral mastectomy. I had regular annual mammograms as well. Even the diagnostic mammogram I had done did not show the ILC, nor did the ultrasound. I knew something was wrong even though the radiologist insisted there was nothing indicating cancer. Finally after the MRI with biopsy found multifocal ILC, I knew that I never wanted to go through that uncertainty again. My cancer was up against the chest wall, so I also had chemo, then surgery and am almost finished with radiation. The surgeon told me that the other breast was not cancerous, but I am still comfortable with my decision.

    · Share on FacebookShare on Twitter
  • debbsie
    debbsie Member Posts: 45
    edited June 2011

    I am also choosing bilateral with surgery scheduled for the end of the month.  It was so difficult to find the extent of the disease, like playing hide and go seek.  My fabulous GYN felt something and sent me in for testing.  Nothing shows up on mammogram.  Ultrasound found some, MRI found some more.  And even now, my radiologist can't say that everything has been found...  I am choosing prophylactic mastectomy on the side that has not shown any cancer because I can't imagine playing this horrible game of hide and seek again!

    · Share on FacebookShare on Twitter
  • kluce
    kluce Member Posts: 1
    edited June 2011

    Hi Everyone, I just joined today looking for opinions and info from those who really know.  I am in the same situation.  Diagnosed with Stage 0-1 DCIS in my right breast on June 4, lumpectomy and sentinal node biopsy on June 14, and the pathology report came back positive for ILC and and an upgrade to Stage 2.  Lymph nodes are clear, thank God.  Second lumpectomy yesterday to take more around the margins and am now waiting for lab results.  Scary part for  me is the ILC was not detected on my mammogram and I had no other symptoms.  The decision I'm trying to make now is that if the margins aren't clean and I need a mastectomy, do I want to go ahead and let them take both breasts to save going through this again.  Thanks to all of you for sharing your experiences.  It is really helpful to those of us still in the decision-making stages.

    · Share on FacebookShare on Twitter
  • Gitane
    Gitane Member Posts: 1,885
    edited June 2011

    Hi kluce,  You can read my answer above.  I just wanted to say "sorry" you find yourself with ILC and hope for the best for you.  Hugs, B.

    · Share on FacebookShare on Twitter
  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited June 2011

    Ladies,

    I'm not quite in the same boat since a mast had to happen on my left breast.  And when I was tested positive for BRCA then it was recommended on the right, also.  It's a tough decision.  Some ladies love their girls so much that they will do anything to keep them.  Even with reconstruction (which I didn't have) the sensations will never be the same.  But the uncertainty of ILC being detected is scary.  So whatever you decide, I'm wishing you the best.  Just make sure it's what you want and not just what the docs recommend.

    Cyberhugs!

    · Share on FacebookShare on Twitter

Categories