ILC & LCIS in Same Breast

Anonymous

I guess I'm the first to post here...my bc was mixed - ILC and LCIS - does anyone know WHY the LCIS involvement puts me/us at a higher risk of recurrence or of it "popping up" in the remaining breast? And, does anyone know what the percentage of this happening is?
Thanks,
Laura

PNWKaren

Laura--I had similar pathology--multifocal ILC with multiple sites LCIS in my left breast--and was told the same as you--higher risk of recurrence, and in the opposite breast. I was also told that they don't yet know why this is--only that research consistently supports this finding and the percentage of tumors being found to be ILC is growing. Here are links to abstracts of some of the articles I read on my own when making my decision for surgery. I looked for information published in the last five years. I chose a bilateral mastectomy because of this risk.

http://cat.inist.fr/?aModele=afficheN&cpsidt=1073378

http://www.ncbi.nlm.nih.gov/entrez/query...p;dopt=Abstract

http://www.ncbi.nlm.nih.gov/entrez/query...t_uids=12199752

http://www.ncbi.nlm.nih.gov/entrez/query...t_uids=16965988

Anonymous

Thanks Karen -
I wish now that I would have had a bi-lateral. At the time, I just didn't think I could handle the pain of both. Thanks for the links...very interesting...but more studies need to be done. I wonder why ILC is on the rise? I am most likely having a prophyl. in January. The thought of it though, makes me (literally) sick to my stomach. It's good that you had the bi-lateral. Be well.
Laura

PNWKaren

You're welcome, Laura. I have no regrets about having the bilat--I was afraid that if I did less I would end up having more surgery and I believe I was right--my surgeon went in looking for one known tumor and found three. In addition one of those tumors had borderline margins and I will have to do rads after finishing chemo. My right breast was clean but did have fibrous changes--I think it would have only been a matter of time. Even so I think I am still looking at more surgery to remove my ovaries--anything to lessen the risk of a recurrence and having to repeat chemo.

If it is any comfort I actually had very very little post surgical pain on the non-cancerous side--no rooting for lymph nodes, you know, which I think is a big source of our post-op pain. My bilat was actually done as an outpatient procedure--I was home by 5 pm--taking Tylenol only for pain control in less than a week and on a plane for a family trip ten days later.

Good luck and God bless.

jacksmom5-2006Oct14

I was diagnosed with ILC in the left breast last December and chose to have a mastectomy with SNB. Had 5 positive nodes. At the time, I did not know about the increased risk of having it in the other breast otherwise I would have chosen to do a bilateral at the same time. After chemo and rads were finished, I had a prophylactic mastectomy on the right in September. Path report came back atypical lobular hyperplasia which is precancerous. The surgeon said it was only a matter of time before I would have had the same thing in that breast. I am glad I made that decision. It is enough to worry about it recurring someplace else. Don't want to have to do chemo again unless I have to. The only difference between LCIS and ILC is that LCIS has not broken through the wall of the lobule and ILC has. My tumor was 70% LCIS and 30% ILC. What to do is an individual decision. You do what will make you comfortable.

Sue
ILC L mast nodes + ER/PR+ Her2neu -/proph R mast
AC x 4/Taxol x 4, 28 rads Arimidex x 5yrs

Anonymous

Karen -
Thanks again! You are not the only one that has said the prophy is more tolerable. That's great to hear! Of course it makes sense, because less tissue is removed, no nodes, etc. And looking back I think I blamed most of my pain on the Mast. when it was actually more from the Ax. Node Dis...DAMN NODES...LOL I found two lumps in the "good" breast" last week and will be having a mammo and U.S. on Monday. If they are "just cysts" I have the luxury of waiting until January. If they're not...I'll have to go in as soon as possible. Take care. Be well. Your baby is adorable!

Sue -
Thank you! I appreciate the info. If I do have the prophy., I am about 90% certain that the path. will come back with something "bad". Call it a gut feeling, women's intuition, paranoia...or whatever...

You made a great decision! Be well.

Laura

dst

Laura:

I had LCIS on left side and my Onc said tamoxifen was indicdated. Because of family history (lots of , I had genetic testing and wash shocked to be told I had a BRCA-2 mutation. The Onc insisted on a baseline MRI before the tamoxifen and discovered three suspicious lesions in the right breast. Thank goodness for that MRI.

I underwent bilat with reconstruction that was successful except for a staph infection setback. I did 6 cycles of Taxol - not fun, but better than AC. In September I did a 45 mile bikeride to raise funds for the Lance Armstrong Foundation. My hair is growing back and - all in all - life is good. Let me restate that - Life is great.

Losing both breasts was traumatic. My husband held me the whole night before the surgery and we both cired. But the alternative - possibly losing my life - was unthinkable. I feel like I can look back and say I did everything I could to get rid of it.

You can always go back and consider the mastectomy on the other side. Or you can just be extra diligent about getting checked frequently. Only you can decide what's best for you.

Take care. I'll add you to my prayers too.

Debbie

dst

Laura - one last thing - my ovaries come out on Dec 5th. I'm 50, haven't had a period since chemo started (yeah!) and I don't really need them any more.

Debbie

skirk

Hi Laura,
I had idc and dcis in my right breast that a mast. was done on 2 years ago. I am now considering having my left breast removed as I had a mammo and u/s done a few weeks ago, and the technician at the time thought she seen something and then when the radiologist came into the room to have a peek, she said, "Oh, its nothing" and then walked out.
I see my surgeon in December and I am going to have a good talk with him about surgery. I am almost starting to imagine things in my armpit and the breast, I can't stand it anymore. Now i wish that I had a bilateral at the same time too, I am terrified of surgery, and I don't think that we will ever forget how painful the drains are when they are removed!!!
Take Care

Anonymous

Thanks for all the info/opinions/etc! I really appreciate it. I think the overall consensus is: to have the prophy! I have not heard from anyone who had it done and said, gee...I wish I hadn't done that. It's so much easier when your Dr. says you have to have a Mast. But so difficult to say to a Dr. - please remove my breast! LOL

You girls are great -

Laura

Anonymous

I have avoided this thread cause I have DCIS and IDC. I chose bilateral mast. From what I have heard, LCIS and ILC is sneaky! So good luck with whatever decision you make.

Nicki

fancy2

Quote:

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I am terrified of surgery, and I don't think that we will ever forget how painful the drains are when they are removed!!!

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Me too, until Dr. Allen took my drains out. No Pain! My first surgery--removing drains hurt SO much! I had my face all screwed up expecting the worst. He couldn't understand. So I think the difference is that he OPENED THE VALVE AND TOOK THE SUCTION OUT! Well, Duuuuhh!

Anonymous

dst---just wondering; how long between your diagnosis of LCIS and your decision to have BPM? And was there any invasive bc found along with the LCIS when you were first diagnosed? I was diagnosed with LCIS 3 years ago, had lumpectomy, and have been taking tamox ever since. Also have family history--my mom had ILC (lumpectomy, rads, tamox--is now a 20 year survivor!!!). I'm closely monitored by breast exams, take the tamox, and am now alternating mammos with MRIs every 6 months. My first MRI was in August. They saw a 7mm focus of nodularity in the other breast, but 2 radiologists and my oncologist feel it is benign (no biopsy done); I also had follow up mammos that were benign as well. Makes me rest easier knowing that 3 doctors all have the same opinion, but I still always have it in the back of my mind. Will have more mammos in March to recheck. I'm so glad to hear you're doing well now.