LCIS Diagnosis--What Do I do next?

Oh, Gad, sunangel!

I know there was one poster here with LCIS and nothing worse, and did get radiation.  She is in the VAST minority though.  

There are some studies that talk about LCIS with radiation. All of the LCIS (and nothing worse) treated with radiation were done at France, as far as I know.  It did NOT catch on, as far as I know.

http://www.ncbi.nlm.nih.gov/pubmed/1569163

http://www.ncbi.nlm.nih.gov/pubmed/976940

Breast cancer after a diagnosis of LCIS and nothing worse is definitely bilateral, and of equal or almost equal chance in each breast.

I bet KellyMaryland is right - I bet they coded you as DCIS.  LCIS is about 7 times less common than DCIS.

This is what the NCI says about LCIS treatment, http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page5

and these are the guidelines from the NCCN.  http://nccn.com/patient-guidelines.html  (click on Breast cancer, LCIS is on page9.)

Glad you got a new oncologist.

Thank you so much Leaf for the info! I will read it.      This is just unbelievable!

Sunangel, what a story!  That is very unsettling.  On one hand, it does not seem to me that two sets of rads should hurt you, but I would be really freaked out regarding such a huge error.  The ONLY time I read about radiation and LCIS was a paper from a particular doc who was writing about pleomorphic LCIS and he felt it should be treated more like DCIS and be radiated.  However I think he is more of an exception.  Normally you would not be radiated for LCIS.  Hope things are going better for you now.

Well, I didn't have exactly your scenario, but this was mine:

I got LCIS on my 1st core biopsy (Dec 2005).  This didn't change on my excision 2 months later. I have a weak family history (paternal grandmother, and 2 maternal aunts, all postmenopausal.)   About 6 months after my excisional, I decided to opt for tamoxifen.   6 months  later (about a year after my excisional) I had 2 more biopsies in 2 other places in my breast, and they found ALH and DH (not atypical ductal hyperplasia).  As you know, LCIS and ALH are often multifocal (often found in several different spots in one or both breasts.)

Since then I've had no breast issues.  I'll be finishing up my 5 years of tamoxifen this fall. (I stopped tamoxifen for 3 months due to unrelated potential issues-unrelated to tamoxifen side effects. ) I had minimal tamoxifen side effects-some mild warm flashes at first, and irregular vaginal bleeding and endometrial polyps (all benign).  However, I had all of these *before* I started tamoxifen too, so I can't necessarily blame them on tamoxifen.

Its all a very individual choice.  I know the importance of not pushing any option. I have confidence you will choose what is best for you.

Jen----I was diagnosed with LCIS 7.5 years ago (and I also have family history of ILC--mom). I do high risk surveillance of alternating mammos and MRIs (MRI coming up in 2 weeks) every 6 months, took tamoxifen for 5 years and now am on evista for further risk reduction. (evista is only for post menopause, so I'm assuming at age 40 you are premenopausal, so it would be tamox in your situation.) LCIS is generally thought to be multifocal and bilateral, so if you have it in one spot, you most likely have it in many areas throughout both breasts. The biopsy itself is not intended to remove all the LCIS (in order to do that, one would actually have to have bilat mastectomies); it is to find out if anything more serious (DCIS or invasive bc) is in there along with it. Fortunately, I haven't had to have any more biopsies in the last 7 years, but I can certainly understand the stress of repeated  biopsies and the anxiety that goes along with that. I think each person has their own level of risk that they can live with and has to decide when enough is enough for their own situation. Feel free to PM me if you'd like to talk.

Anne

Perhaps the most detailed study I have found regarding tamoxifen use in women who do not have a personal history of breast cancer is in the NSABP P-1 trial.  If you look at different patient populations, there are different side effect incidences.  So women with metastatic breast cancer have different incidences of side effects than do women with invasive breast cancer than do women who do not have a personal history of breast cancer.

In the NSABP P-1 trial, about 13,000 women (about 800 of these women had LCIS at the start of the trial) took either tamoxifen or placebo daily for 5 years.

Table 3 lists the side effects of each group (which is about at page 9 or 11 - pages are 'double numbered'.)  http://google2.fda.gov/search?q=cache:PTzRxD9U59AJ:www.accessdata.fda.gov/drugsatfda_docs/label/2002/17970s37s44s49lbl.pdf+tamoxifen+package+insert&client=FDAgov&site=FDAgov&lr=&proxystylesheet=FDAgov&output=xml_no_dtd&ie=UTF-8&access=p&oe=UTF-8