LCIS...frustrating

Kimber----praying you get good results very soon.

Anne 

Kim.  I wish I had seen your earlier posts.  I too had the stereotactic (wire placing) procedure before they took me up to the OR for an excision.  I had several friends who had been through it (one who passed out like you did) and another who said it was simply "barberic".  When my BS told me that's what they were doing I said I would only have it done with xanax (same class as valium) on board.  He laughed (?) but knew I was serious, so agreed.  It did make it more bearable.  That was 6 years ago.  They found LCIS on that excision and on the following one too-the next year.  I was then under very close survellience. MRI's and mammo's alternating 6 months (so one annually).  I had multiple ultrasounds and at least  3 nipple biopsies following that.

  My BS (then) would not consider  (or even talk about) propylactic mastectomy.  After a final fiasco with him-they almost needle biopsied the wrong site, I went for another opinon-well actually, I changed BS.  I have had two findings of LCIS in the right breast, very dense breasts and a family history (though, I thought, far removed-maternal grandmother and maternal aunt-I've always been led to believe it was only your mother and sister that really "counted").

New BS saw my records, talked with me abit and then said she would continue the close monitoring.  When I asked about the possibility of a PBMX, she said she thought it was a great option for me-and knew that my old BS didn't believe in that route of tx.  (Uh, I would have liked to have known that and had at least a conversation about it).  She got me to a plastic surgeon who did immediate reconstruction-and nipple sparing.

 I had it done 8 days ago.  No one talks about the emotional toll of the careful monitoring (well, that's not fair, many women here do)  and it's different for everyone.  I tend toward anxiety and rumination, so every time I had to go back for another test, had an MRI, had a biopsy, I spend days in misery waiting for the results.

 I felt immediate relief when the surgery was over-though I will admit, I was ambivalent about taking such an aggressive approach right until the last minute.

  Bottom line:  the pathology report(after the surgery)showed DCIS-a more aggresive cancer in my left breast-always mammo'ed and MRI'ed over the previous 6 years-remember, I have very dense breasts-which makes it hard to "see" things on these tests-and may be very different from what you have.  My BS, when she reviewed the path report with me last Friday, said I "dodged a bullet" and that these findings should reinforce the decision that I made to have the PBMX.

 Please understand, I'm not writing you about this to suggest that you have a PBMX.  That is a very personal, individual decision. Nor am I suggesting that they miss everything when doing these tests-just that it's a greater possibility if you have dense breasts.  I feel very lucky with my outcome, but not everyone who has had BMX's (with or without reconstruction) feels that way.

 Having as much information as possible and knowing what questions to ask is key.  And it took me, frankly, 6 years, to realize that.  This site has been an amazing source of information and support.

  Please feel free to PM me if you have any questions.  I cannot emphasize enough-whatever my journey, I have no preconceived notions about what yours should be-and I'm NOT the PBMX saleslady!

  Pat

Good for you going to get your report - I don't think I would have dared!!

According to the NCI, re: tamoxifen

In women older than 50 years, this benefit was accompanied by an annual incidence of 1 to 2 per 1,000 women of endometrial cancer and thrombotic events. (Refer to the PDQ summary on Breast Cancer Prevention for more information.) http://www.cancer.gov/cancertopics/pdq/treatment/breast/healthprofessional/page5

Cost of tamoxifen will vary from pharmacy to pharmacy, but in a quick Google search I see prices quoted between about $20/mo (in quantity) to about $100 or $200/mo.  You can call up your local pharmacy and ask.

Kimber-----no DCIS and no invasive bc found---that's fantastic news!!!!   At 41, I'm assuming you are still premenopausal--if so, tamox is your only choice right now. (evista is only for post-meno). From someone who has taken both meds, they are not "awful"---you hear alot of negatives here because this is where people come for support (as they should); but actually most women tolerate both meds well, you just don't hear a lot from those that are doing well. My tamox, which was generic, was cheap--about $20 for a 3-month supply mail away. (my evista, on the other hand, is brand name and very expensive, $249 for 3-month supply). Just be sure to get a yearly transvaginal US to monitor both the uterine lining and the ovaries.  LCIS is often found to be bilateral, but not always, but generally is thought to affect both breasts. Mine was only found in the right breast, but I know I probably have it throughout both breasts. If it was pleomorphic, it would say so in your pathology report, so you should be able to assume it is classic LCIS. They generally recommend that a daughter is screened  10 to 12 years earlier than the age her mom was diagnosed, or at least by age 40. (I don't know what the recommendations would be for your sister, since you don't have invasive bc or family history; I would tell her to talk with her doctor about it)  My mom was 57; my gyn had me go for a screening mammo at age 34. Since I was diagnosed at age 46, in theory my daughter should start at age 34 as well, but I'll be encouraging her to go at 30.  

Anne 

 Your feelings are valid.  No one but you knows what this means to you.  It doesn't matter if someone has it 'worse'.  There is always someone who has it worse, and someone who has it better.

It is never wrong to try to help alleviate disease or suffering.  You gave of yourself, and now you need someone to care about you.  As you say, it comes full circle.

Take as much time as you need to take in making your decision.  There is no huge rush.

Kimber, first - know your feelings are valid.  We all handle things differently, and I am in your situation, and I feel the same way.  Scared about test results and what the future holds, and a bit dismayed at myself for feeling that way when so many others have it so much worse.  But, for US, this is the worst we have had to deal with, so it is very real to us.  I also had the wire placement (they couldn't get the wire in place and I thought the guy was going to end up standing on my chest to get it in!  Thankfully, I was numb, and didn't feel it!).  They finally got it in, did the surgery (6/1/11), and found LCIS.  I have already seen the oncologist and since I am 48 and premenopausal, I started Tamoxifen on June 18, 2011.  Since I have LCIS and a family history, the ONC ordered genetic testing, so I get my BRCA results on Monday.  Scared to death to get results, but have to know.  If I am positive, she said we need to discuss mastecomies and ovary removal.  If I am negative, for now, we will continue Tamoxifen for 5 years, with frequent visits to breast surgeon, oncologist, mammograms, ultrasounds and MRI (I have very dense tissue).  So, could it be worse?  We all know it could.  Am I tired of people telling me how "lucky" I am.  Oh yeah.  I am not feeling real lucky.  Yes, I get that it could be worse, and I know that I am lucky, but I don't need people dismissing what I have because it isn't fatal at this time.  Our feelings are real, we have reasons to be scared.  I completely understand how you feel.

Agree with awb that the FEA is not a huge hazard, now that you have surgical excision to prove what's going on is nothing worse.  Here is a discussion of FEA and it's correlation to DCIS/invasive findings.  Seems like they are looking at this pathology type quite a bit these days and it seems to turn up often enough with LCIS. 

They told me I could take tamoxifen for 5 years and come in every 90 days for follow up.  Would have done that if I had a decent family hx (didn't) and a lower grade of LCIS.  http://ajcp.ascpjournals.org/content/131/6/802.long