Topic: LCIS--close monitoring

Anne,

I'm really feeling for you right now. Here's hoping your US goes well, but knowing that it will only be a temporary relief - until the next mammo/MRI. Close monitoring is good, but increased stress and anxiety is the price.

Anne

US results were good---"probably benign--recommend 6 month f/u".  So I guess I'm "good to go for 6 months". (just wish it could be like my colonoscopy---5 years!!!!!)  As you said Peaches, it's a relief, but only a temporary one.  I guess that's the way it's going to be living with LCIS; the anxiety of constant vigilance or BPMs.  I'm just not ready for the surgical decision and I don't know when I will be ready.  For now, I'll just stay with the close monitoring and tamox.

HI

  i am new here! What is everyones thoughts on taking tamox for lcis.Please share! Thanks..I have lcis for about 1 1/2 years and have just been doing the close monitoring

helene----when I was first diagnosed with LCIS 4 years ago (sept/03), my oncologist left the decision whether or not to take tamoxifen up to me and said he would support me either way.  My surgeon had given me 3 options: 1) close monitoring 2) tamox and close monitoring 3)bilateral prophalatic mastectomies  (these seem to be the standard 3 options given for LCIS without any invasive bc).

I chose to do #2 after my initial lumpectomy  (All my docs (onc, pcp,gyn, bs) felt BPMs were too drastic in my situation) as I also have family history and wanted to do something proactive to try and prevent an invasive bc in my future.  Like Jennifer, I now have MRIs alternating every 6 months with digital mammos. They are presently "watching" 3 spots--see my first post---so while frequent monitoring gives me some added security, it also creates stress as well.  A friend told me she was very glad I was "doing something about my LCIS"---her docs never even offered her tamox and she had invasive bc within 4 years of her initial diagnosis of LCIS (it was both lobular and ductal and bilateral). That's the problem with LCIS--they don't know who will go on to have invasive bc (or when) and who won't.

Jennifer--my oncologist originally said maybe arimidex after the full 5 years of tamox, then recently said "probably nothing and then I'll see you only once a year". My pcp said they probably will put me on Evista.  As far as I know, the risk for LCIS remains elevated and does not go down over time (as with DCIS or invasive bc's), so I plan on having that discussion with my onc--I would like continued monitoring.

Anne 

I am not sure if there is a consensus opinion what to do about LCIS once you have had invasive BC, or if you get LCIS after invasive.

I think most people think that if you have LCIS and nothing worse, that a 'recurrance' of LCIS (and nothing worse) isn't of much significance because LCIS is usually considered a risk factor for invasive BC. In some small, unknown percentage of cases, it may be a precursor. For LCIS and nothing worse, my understanding is that even if you only have one small area of LCIS that was completely excised, it puts both breasts at risk. However, to find that out somewhat conclusively, they would need to do bilateral mastectomies.

However, one paper opined that LCIS found at the time of invasive breast cancer was not a contradiction to breast conserving therapy.

I have a question....if our LCIS doesn't show up on Mamos why are they monitored this way?  Is it to see if it turned into a "REAL" breast cancer?

Did you do the tomoxifin for 5 years?

Hi,

I just found out I have LCIS and told to take raloxefine, with a mamo every year and exam every 6 months.  My mom and grandmother have had BC. Has anyone taken this drug.. I was told it's still being tested for BC. I am going to get a 2nd opinion from another onc.

connie

Hi connie48 and Ladies,

I have been monitoring the boards daily, but have not added any comments for awhile. I appreciate everyone's information.

I am taking raloxifine. I started last April. I was diagnosed with LCIS (and nothing else) in September '06.  I have become part of a high risk program which includes alternating mammos with MRIs, physical exams 2X a year and raloxifene. I could not take tamoxifen due to vision issues.

Until recently, I did not have any side effects. Lately, I have been having minor hot flashes at night. Hopefully, it won't get worse. I can live with this. 

 Lydia

I

Suze: I am on tamoxifen for LCIS too (started 7-06).

This is the abstract for the STAR trial.
Effects of tamoxifen vs raloxifene on the risk of developing invasive breast cancer and other disease outcomes: the NSABP Study of Tamoxifen and Raloxifene (STAR) P-2 trial.

Vogel VG, Costantino JP, Wickerham DL, Cronin WM, Cecchini RS, Atkins JN, Bevers TB, Fehrenbacher L, Pajon ER Jr, Wade JL 3rd, Robidoux A, Margolese RG, James J, Lippman SM, Runowicz CD, Ganz PA, Reis SE, McCaskill-Stevens W, Ford LG, Jordan VC, Wolmark N; National Surgical Adjuvant Breast and Bowel Project (NSABP).
Magee-Womens Hospital, University of Pittsburgh School of Medicine, University of Pittsburgh, Pittsburgh, Pa 15213-3221, USA. vvogel@magee.edu
CONTEXT: Tamoxifen is approved for the reduction of breast cancer risk, and raloxifene has demonstrated a reduced risk of breast cancer in trials of older women with osteoporosis. OBJECTIVE: To compare the relative effects and safety of raloxifene and tamoxifen on the risk of developing invasive breast cancer and other disease outcomes. DESIGN, SETTING, AND PATIENTS: The National Surgical Adjuvant Breast and Bowel Project Study of Tamoxifen and Raloxifene trial, a prospective, double-blind, randomized clinical trial conducted beginning July 1, 1999, in nearly 200 clinical centers throughout North America, with final analysis initiated after at least 327 incident invasive breast cancers were diagnosed. Patients were 19,747 postmenopausal women of mean age 58.5 years with increased 5-year breast cancer risk (mean risk, 4.03% [SD, 2.17%]). Data reported are based on a cutoff date of December 31, 2005. INTERVENTION: Oral tamoxifen (20 mg/d) or raloxifene (60 mg/d) over 5 years. MAIN OUTCOME MEASURES: Incidence of invasive breast cancer, uterine cancer, noninvasive breast cancer, bone fractures, thromboembolic events. RESULTS: There were 163 cases of invasive breast cancer in women assigned to tamoxifen and 168 in those assigned to raloxifene (incidence, 4.30 per 1000 vs 4.41 per 1000; risk ratio [RR], 1.02; 95% confidence interval [CI], 0.82-1.28). There were fewer cases of noninvasive breast cancer in the tamoxifen group (57 cases) than in the raloxifene group (80 cases) (incidence, 1.51 vs 2.11 per 1000; RR, 1.40; 95% CI, 0.98-2.00). There were 36 cases of uterine cancer with tamoxifen and 23 with raloxifene (RR, 0.62; 95% CI, 0.35-1.08). No differences were found for other invasive cancer sites, for ischemic heart disease events, or for stroke. Thromboembolic events occurred less often in the raloxifene group (RR, 0.70; 95% CI, 0.54-0.91). The number of osteoporotic fractures in the groups was similar. There were fewer cataracts (RR, 0.79; 95% CI, 0.68-0.92) and cataract surgeries (RR, 0.82; 95% CI, 0.68-0.99) in the women taking raloxifene. There was no difference in the total number of deaths (101 vs 96 for tamoxifen vs raloxifene) or in causes of death. CONCLUSIONS: Raloxifene is as effective as tamoxifen in reducing the risk of invasive breast cancer and has a lower risk of thromboembolic events and cataracts but a nonstatistically significant higher risk of noninvasive breast cancer. The risk of other cancers, fractures, ischemic heart disease, and stroke is similar for both drugs. TRIAL REGISTRATION: clinicaltrials.gov Identifier: NCT00003906.
PMID: 16754727 [PubMed - indexed for MEDLINE]

9% of the group had LCIS. 893 LCIS women took tamoxifen,and 896 LCIS women took raloxifene.
They only studied tamoxifen for 5 years in this study.

I think they are advocating 5 years of use for tamoxifen as they are extrapolating from women with breast cancer (ie DCIS or worse). If I remember right, tamoxifen in a group like this had no or little benefit, and/or increased risk past 5 years. The protective effect of tamoxifen lasted more than 5 years *in these women with DCIS or worse.*

As far as I know, tamoxifen use beyond 5 years has not been studied in LCIS women. (One factor is that there are so few LCIS women.)

From what I've read, the risk of breast cancer for LCIS women does NOT go down, as opposed to those who have had DCIS or worse.

On the other hand, I'm sure the risk for bc for LCIS women is lower than the risk of bc for *some* other women who have had bc.

This is the blurb about LCIS from the professional section on the NCI website.
Introduction

The term lobular carcinoma in situ (LCIS) is misleading. This lesion is more appropriately termed lobular neoplasia. Strictly speaking, it is not known to be a premalignant lesion, but rather a marker that identifies women at an increased risk for subsequent development of invasive breast cancer. This risk remains elevated even beyond 2 decades, and most of the subsequent cancers are ductal rather than lobular. LCIS is usually multicentric and is frequently bilateral. In a large prospective series from the National Surgical Adjuvant Breast and Bowel Project with a 5-year follow-up of 182 women with LCIS managed with excisional biopsy alone, only eight women developed ipsilateral breast tumors (four of the tumors were invasive).[1] In addition, three women developed contralateral breast tumors (two of the tumors were invasive).

Treatment Option Overview
Most women with LCIS can be managed without additional local therapy after biopsy. No evidence is available that re-excision to obtain clear margins is required. Tamoxifen has decreased the risk of developing breast cancer in women with LCIS and should be considered in the routine management of these women.[2] The NSABP P-1 trial of 13,388 high-risk women comparing tamoxifen to placebo demonstrated an overall 49% decrease in invasive breast cancer, with a mean follow-up of 47.7 months.[2] Risk was reduced by 56% in the subset of 826 women with a history of LCIS, and the average annual hazard rate for invasive cancer fell from 12.99 per 1,000 women to 5.69 per 1,000 women. 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.) 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. Axillary lymph node dissection is not necessary in the management of LCIS.

Treatment Options for Patients with LCIS
Observation after diagnostic biopsy.


Tamoxifen to decrease the incidence of subsequent breast cancers.


Ongoing breast cancer prevention trials.[3]


Bilateral prophylactic total mastectomy, without axillary node dissection.

********


My onc said by the time I finish my 5 year course of tamoxifen, there may be some studies that give some suggestion what to do next.

Leaf, I agree that a baseline MRI would be a good idea for you. I'm going to be having MRI's every six months along with mammos as screening. I have a lot of pleomorphic LCIS left in my breast after they removed the ILC, and am doing the MRI's in place of bilat mast. Have no idea if my insurance is going to balk at paying for endless MRI's, but I guess I'll find out.

I was surprised when I saw my BS recently that she is requesting both MRI and mammo in February. I thought it would be alternating, or maybe mammo's every 6 months and yearly MRIs. So far, my insurance hasn't said anything about the screenings. In my experience, the screenings and the biopsies are worse than my anxiety over getting cancer, maybe because they are more immediate and have been very uncomfortable...okay, downright painful. I will definitely ask for something to help me with the pain before the next biopsy.

Anne

Since I have just been diagnosed with LCIS on Nov 13, 2007, I am new to all of this. I am going for the BRCA gene testing on Dec 20 since my mother had breast cancer and I have 2 grownup (wonderful) daughters who might be affected by the test. The test people told me that there will be 1 session when they will counsel me and make sure I understand the ramifications of the test. If I am then agreeable, they will draw blood and send it out for testing. The results will come back in 3 weeks. I will be spending this time in France. I plan to drink wine, have fun and hopefully use the denial techniques that my mother perfected so well in her lifetime. The difference is that I am not denying the risk of this crazy "non-cancer" cancer marker! If I have the BRCA gene I am quite sure that I will get a double mastectomy. I will know the results when I return

.Since I know very little about this "close monitoring" RX what is the best way to do it? Should I see my gyn for a physical exam every 6 months, or my breast surgeon, or the oncologist that I got a consult with, or the mammogram people? What's this about an MRI and who and how does one get to put that on the schedule? I'm not too happy with this whole menu...I'd rather be choosing wine from a wine list!!

Hi there femme! I found genetic counseling by a board certified genetics counselor very helpful. I don't have a bad family history, so I opted not to get tested. Glad to hear you have excellent coping strategies in the meantime before you get your results back!!

There is no 'best way' to handle LCIS. There is only what is best for YOU. Everything about it seems to be at least somewhat controversial, including its name, whether it should be considered cancer, what the risks are, how it should be handled.

Here is the URL to the most recent ACS paper about monitoring high risk women with MRI. http://caonline.amcancersoc.org/cgi/content/full/57/2/75

If you do indeed prove to be BRCA positive, that would put you in a category they would recommend MRIs. But if you have LCIS alone, then this paper does not recommend for or against MRI screening.

In the Port study (at Sloan Kettering) that looked at MRI screening in LCIS and Atypical Hyperplasia women, they do yearly mammograms, and biannual clinical exams. It seems that is the usual course, and what I am getting. (I also take tamoxifen.)

At my 'major university' consult, they told me I had too much scar tissue (after my excision and biopsies) to do MRI even for a baseline.

In the Port study they had 2 out of the 11 LCIS patients who were diagnosed with breast cancer had a family history (first degree relative with breast cancer.) This is approximately the incidence of genetically linked breast cancer among all women with breast cancer. (About 10-15% of all breast cancers are genetically linked.) Although these numbers are not statistically significant, it sounds like the women with a bad family history are not significantly overrepresented in the LCIS women who got breast cancer.

Awb is right. A lot seems to depend on what your individual doctor feels and recommends. It probably also depends a lot on what your insurance will cover. My breast surgeon said she does not want to do any more surgery on me. (I have LCIS and ALH and a weak family history.)

Hi there femme.

I did the same (started to see a therapist) after I got diagnosed (after the excision, so I knew I didn't have active breast cancer.) I have been getting (or suspecting) one diagnosis or another every 3-6 months since I had an endometrial polyp removed 9-05. (I was diagnosed with LCIS on core biopsy 12-05 and by excision 1-06.) I just started antidepressants last month, and started biofeedback this month.

I will PM you my profession.

Hello Everyone...This is my first visit to this site as I was diagnosed with LCIS in December 07. Digesting everything has been a bit overwhelming but today I met with an onc to discuss tamoxifen and raloxifene as well as PBM. I'm 56, otherwise very healthy and active. My goal is to avoid invasive breast cancer, radiation and chemo at some later date so I'm opting for raloxifene short term with probable PBM in the fall. Lots of happy occasions coming this year so I want to enjoy every minute of them before dealing with this situation head on. I feel that even if I take the drugs for 5 years (which I don't want to do), I will still have LCIS. Later this month I meet with a PS to discuss reconstruction options. Anyone on this site who has chosen my plan of treatment for LCIS or who has words of wisdom? Now that I'm over the shock of it all, I feel quite peaceful and content with my decisions. I feel that it is important for each of us to deal with LCIS in whatever way makes us comfortable, whatever that decision may be.