Diagnosed with LCIS over the Summer

Hi Theresa

I am so sorry you have also found yourself here. Your situation sounds similar to mine in that they first found ALH on needle biopsy in March, then LCIS on lumpectomy in July and now PLCIS on MRI guided biopsy in Oct.  It is so difficult to make these decisions and everyone has to do what is right for you.  So far most of the medical people I have encountered, don't really like to come right out and say to do one thing over the other, but rather give me options of treatment and leave it up to me to decide.  Although it does seem like they lean one way or another.  Perhaps it would be benefical for you to get a second opinion.  If I read correctly it was the oncologist who is suggesting tamoxifen and the surgeon who is suggesting mastectomy.  Is your surgeon a general surgeon, or someone who specializes in breast?  Are you having genetics counselling to see if you carry the BRCA gene?  This may also be helpful.

Keeping you in my thoughts

Cathy

Just like tree says, if you are like most LCIS women, you will have time to decide.  There is no right decision for everyone. 

I chose the tamoxifen for now.  (I have other medical and psychological issues, so my choice may change.) I will be done with my 5 years of tamoxifen in mid-2011.  The only side effects I've had from tamoxifen are some 'warm' flashes and endometrial polyps (all benign).  If you read the tamoxifen forum, you might think that anyone would be nuts to take tamoxifen.  But remember we are not a representative sample of the people who take a certain drug or have a certain procedure (such as mastectomy).  

In this 2005 study, Fourteen patients (35%) were placed on a selective estrogen-receptor modulator. Eleven patients (28%) had bilateral mastectomy. Three patients had unilateral mastectomy. http://www.ncbi.nlm.nih.gov/pubmed/15862506

In this study, less than half of the women (this was a group of both LCIS and AH women) who were offered tamoxifen took it. "Fifty-seven of the women who were offered tamoxifen (42%) took the drug"http://www.ncbi.nlm.nih.gov/pubmed/15112259

In this 2001 study of women offered tamoxifen, "Of the total 43 patients, two (4.7%) elected to start taking tamoxifen. Fifteen patients (34.8%) declined immediately, and 26 patients (60.5%) were undecided initially but ultimately declined." http://www.ncbi.nlm.nih.gov/pubmed/11508619

You have to be careful about the timing of these studies, because the NSABP and STAR trials tested tamoxifen as a preventative, and those were being done in the late 1990s/early 2000s.  Before the 1990s, LCIS was usually handled with BPMs.  According to the NCI,"Bilateral prophylactic mastectomy is sometimes considered an alternative approach for women at high risk for breast cancer. Many breast surgeons, however, now consider this to be an overly aggressive approach." http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page6  This attitude is shared by my breast surgeon, but I can't stand her; she was not supportive of BPMs even before she asked about my family history!

This attitude does not seem to be shared by the doctors of the LCIS patients that post here.  While it is known that people that post on on-line forums are usually not the people that accept their LCIS and go on with their lives.  If you don't have problems with something, you tend not to continue posting about it.  I see very few LCIS women here who opt for watchful waiting without anti-hormonals or mastectomies.  (Of course, watchful waiting is a very valid choice for some.)This is not a 'majority rules' type of choice.  You need to do what is best for YOU, not best for anyone else. Even if 99% of a group choose option A, you may come to the very valid conclusion that your best choice is option B.

Theresa-----I was diagnosed with LCIS 6 years ago and I also have family history of bc (mom had ILC). I was given the 3 standard options of close monitoring alone, monitoring along with tamoxifen as a preventative, and BPMs (which all my docs felt was too drastic a choice even with the strong family history). I was already watched closely due to my mom's history and I wanted to be proactive, so I chose to take the tamoxifen. I took it for 5 years and tolerated it pretty well overall and now that I am postmenopausal, I take Evista for further preventative measures. I continue with my high risk surveillance of alternating digital mammos with MRIs every 6 months, breast exams on the opposite 6 months, and of course BSEs. Fortunately, I haven't had to have any further biopsies. While this choice works for me, it's not for everybody. Feel free to PM me with questions if you'd like.

Anne