LCIS Diagnosis

LCIS is a rather unusual condition, so we don't know that much about it.  Since we usually don't know what causes breast cancer, we usually don't know what causes LCIS.  If you have a single genetic gene mutation (such as BRCA), and if you have LCIS, then to the degree that a BRCA mutation causes breast cancer, you could say that LCIS is hereditary.  But only about 15% of breast cancers are thought to be genetically linked.  About 70% of women who get breast cancer have no obvious cause of breast cancer (besides being a woman.)  Deleterious BRCA mutations are associated with a much higher chance of all types of breast cancer, not solely LCIS.  In addition, there are men and women with a deleterious BRCA mutation who do NOT ever get breast cancer. 

I don't know of any other group who has this number of people with LCIS.  (But just because I don't know of any doesn't mean there aren't any.) One paper from decades ago estimated the incidence of LCIS in the general population as about 1:10,000. (This is by nature a rough estimation, because normally LCIS is found only in women who have a breast biopsy.  We don't know how many women are walking around with LCIS and don't know it.)

Whatever way you choose of handling your LCIS diagnosis, you will have comrades here who have also chosen your path.

Meg,

I had LCIS four years ago and knew I couldn't take the close surveillance every 6 months for the rest of my life. Also I didn't want to be on any meds. So I made the decision to have a PBM with direct implants and have NEVER regreted my choice. Before my surgery everyday I was consumed by thoughts worry and of what if I don't have surgery. After the surgery there is a calmimg feeling of knowing I got it before it got me. There are days I never think about what happened to me because I had the surgery.

The surgery isn't as bad as you think. There really is no pain just a sore tight feeling. The worst part are the drains. I had started a thread called "prophylactic bilateral mastectomy for LCIS" type it in under seach with my name Stonebrook108 and it should come up. So many wonderful ladies answers my questions and helped me out on that thread.

Feel free to send me a private message if you have any questions. Good luck in what ever you decide.

Hi Everyone!

I'm new to this forum. I'm 41, and had my first screening mammo on 2/28.  From there I was called back for diagnostic mammos and bilateral ultrasounds, which led me to core needle biopsies on 3/8 and bilateral wire localization excisional biopsies on 4/16.  I'm so stressed at this point, and can't imagine going through this over and over again, emotionally.  I have no family history.  On core needle biopsy they found  extensive LCIS with pagetoid spread and microcalcifications on the left.  On the right, I have  ALH, and Flat Epithelial Atypia within a complex fibroadenoma.  The lumpectomies showed the same, with the addition of ADH on the right.  When the Nurse Practioner called me yesterday with results, she said although results are "negative" the breast surgeon may want to do more surgery and remove more tissue on the left?! This of course, makes me think they suspect there's more, maybe due to the pattern oif the microcalcs or something? I'm being seen at a well known breast clinic/cancer hospital. I go for follow-up with BS on the 29th.  I'm scared of Tamoxifen due to having inflammatory arthritis, but she told me this would be discussed after surgery.  I am seriously thinking about asking about PBM.  I just can't imagine having to go through this again and again, although there's no way of predicting.  Any advice?  Am I being too radical in my thinking?  Just need some advice from anyone who has been through a similar situation.  

PS.  Has anyone had a clip/marker lost during lumpectomy??  They couldn't find one of mine during surgery, although it was there during wire loc!

Thanks so much!!

Beckie

Thanks Melissa.  Glad you are doing well after goin through a rough time too!! I will see what the surgeon says on the 29th...hopefully not another round of surgery.  Wasn't quite clear on why I may need more, but hopefully the NP was wrong. If so, we will go from there.  Would love to fast foward a couple of months!  Thanks for helping me feel better

Beckie

Hi Anne....thanks for responding!  I spoke with the nurse practitioner today, and she still doesn't know if my surgeon has decided on more surgery or not.  Just so confused as to why? There are so many differing studies out there regarding LCIS and whether you need to "get it all" or not.  I got a copy of my path reports and aside from the pagetoid spread into ducts, the lumpectomy also showed flat epithelial atypia, apocrine metaplasia, sclerosing adenosis, microcalcs, and ADH near or within the LCIS. Same on right breast, minus the LCIS, but with ALH. With all of these markers, I am nervous that they think there is more hiding and they just haven't excised enough of it.  Crazy, I know....my mind is workin OT!!  I have deciden that when I go in for follow-up on Monday, I'm going to ask for genetic testing. My Mom, and both grandmothers died before age 55 of other things...who knows if they would have developed breast cancer?  They are going to offer Tamoxifen, as we have discussed this before, and I'm going to probably TRY it.  Nervous due to autoimmune issues/arthritis.  If BRCA positive, I will seriously consider PBM's. Does anyone know how long BRCA testing takes to come back?  If I have another surgery, it is prob 6 weeks out, due to huge hematoma from lumpectomy.  Just so relieved they won't have to do the wire localization again....that was awful! Thanks for listening!    

Thanks Anne...I appreciate your input!  Didn't know genetic testing was such a wait, good to know.  Yes, I do see a rheumatologist.  Hopefully I will tolerate Tamoxifen better than i did Methotrexate, which suppresses your immune system.  I will discuss with her at my next appointment. Thanks again! I will update you after my appointment on Monday.