Mastectomy for LCIS?

Crescent5, Beacon800 and all fellow travelers:

You are absolutely right there certainly is no consenses, no long term data with LCIS and PLCIS.  However, my researching  is detecting a trend.  UpToDate is an evidence based, peer reviewed information source subscription website for health care providers.  It is considered highly reliable and respected and many physcians consult this source to learn of latest evidence and determine current standard of care. Below I copied a section from the enrty on LCIS dated June 14, 2011 with latest literature update March 2012, author Michael Sabel, MD.

Pleomorphic subtype - The proper treatment for PLCIS is undefined, due largely to the small number of reported cases and lack of long-term follow-up data. However, the available evidence suggests that PLCIS represents biologically aggressive, high-grade disease that may predispose to pleomorphic infiltrating lobular carcinoma.

Thus, while the treatment paradigm for classic LCIS is one of prevention, the treatment of PLCIS is more closely related to that of DCIS, which represents a true precursor lesion to invasive breast cancer. Complete excision of the lesion either via lumpectomy with tumor-free margins and no residual calcifications on mammography or mastectomy is recommended. If a pleomorphic invasive component is present, axillary staging should also be performed, followed by systemic therapy, if indicated.

RT is clearly indicated after lumpectomy if DCIS or an invasive component is present. The exact role of whole breast RT after lumpectomy for pure PLCIS alone is unclear, because local recurrence rates after lumpectomy with or without RT are not known. However, we usually recommend whole breast RT in this setting because of the similarities in biologic behavior between PLCIS and DCIS.

The benefit of a SERM in patients with PLCIS is also undefined, as subset analysis of patients with PLCIS is not possible from the major breast cancer chemoprevention trials [69]. However, even in the setting of DCIS, the benefit of a chemoprevention with a SERM is uncertain. The placebo-controlled NSABP B24 trial found that tamoxifen reduced local recurrence rates after lumpectomy and RT for DCIS, and reduced contralateral breast cancer rates as well. On the other hand, a smaller trial from the United Kingdom, Australia, and New Zealand failed to show that tamoxifen decreased either ipsilateral or contralateral events in patients with DCIS [70].

Nevertheless, despite the lack of data in PLCIS, our suggested approach to PLCIS (with or without an associated DCIS) parallels our recommendations for pure DCIS: lumpectomy plus RT or mastectomy followed by a SERM. There is no information on the utility of using ER status to select patients for a SERM, since LCIS is not typically tested for hormone receptor expression. Even in the setting of DCIS, whether ER expression should be a factor in selecting patients for chemoprevention with a SERM is unsettled.

Um, I would like to add that his comment at the end of the post, where he says that hormone status for LCIS/plcis is not typically done, is quite wrong in my experience. Pretty much everyone I've seen has the er/pr status done, I certainly did and it was standard. Not so sure about this guy really.

beacon-----testing for ER/PR status was not the "standard" when I was diagnosed with LCIS back in 2003. I asked about it, apparently mine was not tested due to my sample size being too small. But everything I've read strongly implies that LCIS is almost always estrogen ER positive. They  wanted me to take tamoxifen either way, since my risk is elevated further by family history of bc (mom had ILC). I took it for the full 5 years, have now been taking evista for 3 years and I'm doing fine, so the meds are working well for me.

anne 

I was diagnosed in 2005, and they did do ER/PR receptors on my core biopsy.  My sample was strongly ER+ and PR-.

In this small study, ER+/PR- was associated with more synchronous LCIS +invasive bc. http://www.ncbi.nlm.nih.gov/pubmed/19309393

hi texaslady.  I also had calcifications on a routine mamo at 53 yrs old.  biopsy showed DCIS.  Then had an open biopsy and that showed LCIS with extension into the duct. They could call it DCIS/Lcis?? I decided to also get a BXM with tram flap immediate reconstruction.  I also got a lot of flax from people in the medical field.  Thank goodness my Dr. did what I wanted.  I have never looked back.  No nodes were taken and no treatment.  I am now 72 yrs and happy I did what I did.  Everyone has to make up their own mind.  I am on site now because a friend was just diagnosed.  God Bless

SERM = Selective Estrogen Recepter Modulator. Tamoxifen is a SERM.

Hi, Leaf and Beacon - As mentioned in my first post, they found the LCIS in my left breast after the mastectomy on 11/2/11.  However, there is no mention of hormonal testing of the LCIS in the pathology report. So, they didn't test mine.  

Dobie -  You sound as if you are being hard on yourself because you are worried.  I think being worried about this type of health issue is a normal reaction to a really, really stressful situation. I hope things go smoothly and that the next few months fly by as fast for you as they have for me!  It's hard for me to believe that I am already six months post-BMX!  I love my perky new foobs!  There are definite "perks" (pardon the pun) to this stressful situation.  Yahoo! 

Ok Texaslady, I will ease up on myself. Thanks for your words of support. I sure will be glad when this is behind me as well. The not knowing is the worse part.

texaslady....bc is alwaysin the back of your mind, no matter how long it has been,type, stage or treatment. At times it is better, but aways there.  The control for me was the BXM.  At that time I DID NOT KNOW GRADE, ER/PE OR HR2.  I dont think they did it on LCIS. plus HR2 was not done at all then. regards and know that you took the safest route to avoid future problems.

Dobie - Just wanted to let you know that I'm thinking of you.  I hope everything goes well for you tomorrow!

Dobie - I'll look forward to hearing from you!!!  

Dobie

Glad all went well. Get lots of rest and take care of yourself.

Dobie - It's wonderful to hear from you so soon.  I had a hectic week/weekend, but I've been thinking about you. My 14 year old daughter had an 8th grade formal awards banquet/graduation dance last night that we were getting ready for (she and I had a girls' day out yesterday--nails, hair, etc.).  She looked beautiful (first pair of high heels!) and she had a great time.  I survived it with just a few sniffles...it hit me yesterday morning that she is growing up too soon.  

I am SO glad to hear things went well for you.  Don't try to be superwoman and get off the meds too soon - they will help you heal faster, plus help you rest better.  Be sure and let us know the pathology results!!  I'll continue thinking about you!  Remember, six months from now will be here before you know it!!!

Just got back from the PS s/p rt NSMX on 5/17. Surprised they already had the path report. And as feared they found invasive lobular cancer (ILC), 2 very small areas 0.2 cm each. The area of LCIS was >4 cm. 4 nodes negative. The most disappointing finding was LCIS in nipple tissue which means the nip will probably have to go. I am so not surprised about the ILC. That is exactly what happened to me 5 years ago. And now I am seriously rethinking the PMX for my left breast. How can they know what is lurking there? I am so grateful about the early dx but for the first time in 5 years I am really starting to feel sorry for myself, the first time I have shed tears mostly of frustraion. I thought I had this figured out All this time, I have somehow felt separate from all those other women who had Real breast cancer. Mine was early, and in-situ, mine was not life-threatening, mine was not life changing, didn't need chemo, so many worse off.... F***K!!! I'm tired and going to bed. Thanks for lending an ear.

Dobie - I am so sorry to hear of the ILC and the additional LCIS in the nipple tissue.  You have every right to be disappointed, mad, etc.  I wish there was something I could do for you.  Please keep us posted as to what you decide to do now.  You have a lot of people thinking about you during this hard time.  

Mssippiqueen - Thanks for the welcome.  I agree with your statements about LCIS especially after hearing from Dobie today.  When it's your life,  it feels very serious--no matter how anyone else feels about it.