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Topic: Any new research?

Forum: LCIS (Lobular Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for LCIS.

Posted on: Nov 18, 2007 03:34PM - edited Nov 18, 2007 04:04PM by Kitwe

Kitwe wrote:

I am very very mixed up.  I try to be upbeat to others but my insides are churning.  I've had cysts removed from my right breast and everything was always fine. That was 30 years ago. I am (or was) an optimist.  Now at 56 I have  LCIS in my left breast.  I've nursed 3 kids and do not need my boobs I want to remove them.  My Mom has Alzheimer's and I help out a lot. If I had surgery it would be difficult for my parents.  I was never concerned about getting lab results but now I am.  My last mammo showed a thickening in the left breast.  I have a MRI scheduled for Friday.  I guess it is the uncertainty that is bothering me.  If I was told they need to come off, I'd do it.  My doc gave me the 3 choices.  I'm onTamoxifin since July. 

I am also going for a second opinion on the 7th.  Should I be going to a research center like Duke.  I trust my oncologist but do not love her.  I know I'm rambling but I'm not used to being so unsure of what to do.

You all seem so knowledgable and helpful. 

I would be grateful for any help.  I live in South Florida..not close to Sloan

This is the newest research on LCIS.  Is there anything newer? 


A follow-up study about 52 cases of atypical lobular hyperplasia and lobular carcinoma in situ of the breast]

[Article in Chinese]

Li HY, Ren GS, Arnould N, Brettes JP.

Department of General Surgery, the First Affiliated Hospital of Chongqing Medical University, Chongqing 400016, China.

OBJECTIVE: To evaluate the biological behavior and treatment method for the breast atypical lobular hyperplasia (ALH) and breast lobular carcinoma in situ (LCIS). METHODS: Seventeen cases of ALH and thirty-five cases of LCIS were reviewed from July 1982 to January 1996. All cases were followed by physical examination, mammography and B-ultrasound for an average of 146.6 months (range, 3 - 257 months). RESULTS: Most cases ofALH and LCIS occurred before menopause (about 69.2%). Fifty-two cases of ALH and LCIS were occasionally verified pathologically after surgery for benign diseases. The microcalcification with ALH and LCIS had been detected in 25 cases, accounted for 48.1%. Eight cases of ALH/LCIS became invasive carcinoma. There were 5 cases in the same breast, 3 cases in the contralateral breast; The subsequent breast cancer occurred longer than nine years after ALH/LCIS was diagnosed. The family history of breast carcinoma and ovary carcinoma occured in 4 cases of breast carcinoma, accounted for 50%, but it was no significant (P > 0.05). Also, there was no difference betweenLCIS and ALH, which occurred the breast carcinoma (P > 0.05). CONCLUSION: The excisional biopsy might be necessary to ALH and LCIS.

PMID: 17953828 [PubMed - in process]

Kit Dx 5/27/2010, DCIS, Stage 0, Grade 1, ER+/PR-
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Nov 20, 2007 08:13AM - edited Nov 20, 2007 09:21AM by leaf

I am so sorry you are going through this Suze. Welcome to our forum!

My history: I was diagnosed with LCIS 12-05 from a stereotactic biopsy for 'suspicious calcifications', went on tamoxifen 7-06, had 2 biopsies (one 'for potential mis-labeling as scar tissue' 2-07, which came back benign. I had them reread at my local major institution 7-07, and they saw LCIS + ALH, and ductal hyperplasia (not atypical). I had an extremely disappointing consult at a major institution (it was *not* Duke or Sloan Kettering or MD Anderson or John Hopkins or an ivy league school.) I was disappointed because they said I had a breast cancer risk of 10-60%, probably 10-20%. I had never heard of such low figures. I found this 10-20% risk cited in the MRI screening American Cancer Society paper. I think that paper, written by a committee, was *self* inconsistent with risk figures of LCIS. But it spurned me to look further, and I think they really simply do not have the knowledge to predict which individual women with LCIS (or anything else) will get breast cancer and who will not (for women with a weak family history.)

I think that almost all aspects of LCIS have been controversial since it was first proposed as a diagnosis about 1948.

There is not even universal agreement whether or not it should be considered a cancer. The NCI (National Cancer Institute) website says it is better termed lobular neoplasia, that most oncologists consider it benign, and that it is a risk factor for increased incidence of breast cancer. It opines that most breast surgeons are reluctant to do bilateral mastectomies unless you have a family history. I have read another paper that opines that the term LCIS should be used, as opposed to lobular neoplasia.

Up until about the 1990s, I think that bilateral mastectomies were routinely done on women with LCIS and nothing worse. I think that is because they found LCIS is often multifocal and bilateral, and they were equating LCIS with DCIS, which is normally totally excised. But I think its clear that LCIS is a different animal than DCIS. BPMs became much less popular when it was found that early invasive breast cancer can be treated with lumpectomy with radiation, and breast surgeons were not eager to treat LCIS more aggressively than invasive breast cancer.

Treatment of LCIS is a very personal, individual choice. There are NO right or wrong answers for everyone. There is only the best choice for YOU. Some of the factors that MAY influence your choice, that NO ONE can make for you include: how well you are able to tolerate the anxiety involved with all the current treatment choices? How do you feel about using antihormonals with their side effects, and how do you feel about your breasts?

When I looked at Pubmed, no I couldn't find a more newly published study. But just because a study is newly published, does not mean it is a significant study. I don't know what they mean that the LCIS + ALH women "were reviewed" - but those dates are 10-20 years old. Screening has improved since then.

I am not a physician, or a breast cancer statistician, or have a pathology background.

Unfortunately, LCIS (and nothing worse) is quite unusual, so it is very hard to find studies that are large. If you do have large studies, you have the problem of knowing such things as - was LCIS diagnosed consistently (was the pathologist right?)? The women will come from a variety of backgrounds. Will those women have the same risk factors as I do? Yes, they can do statistics on small studies, but the statistics do not mean very much. In your abstract, I cannot calculate from the data given, what the final risk for breast cancer was for their group, because the women were followed for 3-257 months. One would have to look at the original paper.

You can, and do, have conflicting studies on many aspects of breast cancer. I am sure there is a lot of disagreement among doctors. Just looking at the women who have posted here, we LCIS women have been recommended everything from urging bilateral mastectomies to urging watchful waiting. (My surgeon has told be flat out "I am not interested in doing any more surgery on you.", but allowed me going on tamoxifen. I am not pleased with her attitude.)

When you enter LCIS into the Pubmed site, you get some 200+ citations. Most of these citations are from studies that ask the question: If you find LCIS in a biopsy, should you go back in again at that time and do an excision to find out if you have anything worse? I think, though we still get more studies on nuances of this, that most people think the answer to this is Yes. I think most studies have found that when you are diagnosed with LCIS that there might be a ??10-30??% chance they will find something worse (in other words DCIS or invasive breast cancer) in the area they found the LCIS. So I think most places do encourage a woman to have the biopsy area excised when you get LCIS (and nothing worse) in a biopsy. The purpose of this is NOT to excise all of the LCIS (which would be probably impossible without doing bilateral mastectomies), but to see if there is any DCIS or invasive cancer hanging around, which is treated differently.

It is hard to analyze your abstract, because we are not looking at the paper. Plus, of course, I am not a physician or have enough knowledge about LCIS. Looking at the phrases you have highlighted, I think it is fairly well established that the average age of women when they are diagnosed with LCIS is in their 40s or 50s.

I do not understand the significance of the sentence that 52 cases of ALH and LCIS were occasionally verified pathologically after surgery for benign diseases. I don't know if this means that occasionally these women were biopsied or used ductal lavage, I would not expect that to be a significant finding. I think it is routine and expected that if they find something suspicious on screening that they will biopsy it, just as they would with anyone.

I do not understand the context of their last sentence."The excisional biopsy might be necessary to ALH and LCIS." I do not know if they are implying that excisional biopsy should be routine when ALH and LCIS are diagnosed (to rule out invasive breast cancer or DCIS) or if they are implying that all ALH and LCIS that is present in a woman should be excised (which often would require a bilateral mastectomy, because they usually can only detect LCIS by looking at it under the microscope) or what. I am guessing that they are encouraging excisional biopsy around the biopsy area when LCIS is found on biopsy, but I am not sure about this. This is because many other studies feel this way. (I suspect one reason why this is such a popular study is that it is fairly easy to do!!)

I think it is fairly well established that the risk of breast cancer for LCIS does NOT go down after several decades (unlike invasive breast cancer.)

There are many other studies that look at the incidence of LCIS in women who HAVE invasive breast cancer. This is not the situation that women with LCIS and nothing worse have.

Unless you have a strong family history of breast cancer, and/or are independently wealthy, you *may* have problems in getting your insurance company to cover bilateral mastectomies prophylactically.

There are a lot of factors to consider when you choose a treatment option. Bilateral mastectomies are, of course, an irreversible decision.

If I was independently wealthy, then I personally like would be followed at a prominent institution, though not at my local major institution for my breast care. I trust my onc more than I do the way I was treated at my local major institution. (Though of course I have BIG GAPS in my knowledge of LCIS, I could have cited journal articles when they said "If you want more information, it would have to be gotten from journals.") I live much farther away from Duke than you do. I know there are other women who have posted on this board that have been pleased with the way they are followed at Duke, and travel all day to get care there. However, your insurance may very well not cover care at Duke, or you may have to have large co-pays. So this is a very individual decision as well.

I do not know how how expert the different places are around the country.

It is so hard to make these decisions.

We are all different, but my perspective changed after I found my radiologists had missed something totally obvious 3 times in a row. This was after I had a wire insertion where I had a pain score of at least 8 for at least an hour and the radiologist never inquired if I was having any pain. (If I would have said I was in pain, I would have cried, thus moved, thus ruined the procedure.) It does not give me a lot of confidence in my screening. I know radiologists are rushed. I know people can make mistakes. I know breast cancer is difficult to diagnose, but I certainly hate the roller coaster of screening.

I know this is a tough time for you. Please know I am thinking of you.

Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 20, 2007 09:39PM moogie wrote:

If you can go to Duke's High Risk breast clinic for the day, I would recommend it. I travelled there myself and had coordinated appointments with several specialists. Dr. Victoria Seewaldt is conducting a study using RPFNA to sample breast tissue and perhaps you would qualify for this kind of monitoring in a research setting. I got great surveillance there, and much of my worry abated when I had this team analysing and worrying for me!

Hope you will have some peace with this soon. Finding a way to deal with the uncertainty is key. PM me if you want to talk more....,


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Nov 20, 2007 09:49PM Kitwe wrote:


Thanks for your responses/support.  My kids are coming in from out of town.  I'm putting this all on hold until after Thanksgiving (my MRI is Friday)

I'm going to check out my insurance & Duke (Leaf, unfortunately i'm not wealthy)

Ever heard of Lynn Cancer Institute in Florida?

Happy Healthy Thanksgiving

Kit Dx 5/27/2010, DCIS, Stage 0, Grade 1, ER+/PR-
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Nov 21, 2007 12:39AM LCISgirl wrote:


Just wanted to add that my concern regarding prophylactic mastectomy (since LCIS was only found in the right breast and left breast is benign) was answered by my case mgr recently.  She called to let me know that the surgery would be considered medically necessary and covered with a diagnosis of LCIS.  I have bilateral mastectomy scheduled for Dec 1 and will let you know the outcome and if truly the insurance company covers all when the claims are actually submitted!  I was also given the 3 options, but each surgeon I consulted with (4) felt that mastectomy was the best in my situation as the MRI suggested areas might be invasive (just by the look of things).  The excisional biopsy and core biopsy all found LCIS, but all labeled extensive w/multi foci and extending into the ducts.  I'm thinking they just want to be sure that there is nothing lurking in there. (I agree) I tend to be a worrier and this decision is based on how difficult the whole screening/biopsy process has been these last few months.  I just can't imagine myself doing that for a lifetime.  The oncologist said that even if I did the careful monitoring, I'd most likely need to have biopsies each time if any change was noted and I'd rather just remove the trouble now and try to move forward with a little more peace of mind.  I know that you'll find what is most comfortable for you and your situation.  It does sound like you are researching and asking all the questions....If there is anything I can share with my journey, please ask away.  I'll keep you in my prayers as I know how this whole process can be overwhelming. 

Please let us know what you find out~Take Care!

"I have set before you life & death, blessings & curses, positive & negative; therefore God says choose life" Deuteronomy 30:19 Dx 12/2007, ILC, Stage I, Grade 1, 0/4 nodes, ER+/PR+
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Nov 21, 2007 08:54AM moogie wrote:


I am not wealthy either ...far from it!!! But the Duke center participated with the network of my insurance. Even SLoan Kettering in NY participated witht the same policy. SO while I may have had some out of pocket, it still was an attainable fee. A lot of big cancer centers participate with the bulk of insurance plans, and with a doctor's note one can argue that a specialized second opinion is warranted in a diagnosis that has a vague treatment plan.

Give it a try. They bank on folks never testing the boundaries, and many people do not access the true benefit of their coverage!


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Dec 31, 2007 07:22PM - edited Dec 31, 2007 07:28PM by mamaotis


Below is an article from April 2006~it is from the American Cancer Society website; although I have seen it mentioned a couple of other places also.  Someone may have already posted it~but if so I missed it :o) 


New Risks Identified After Early Breast Cancer

A new study of women with early stage, localized breast cancer identifies new patterns and risk factors for invasive disease that may influence how patients are treated. Published in the May 15, 2006 issue of CANCER, a peer-reviewed journal of the American Cancer Society, the study reveals that patients with lobular carcinoma in situ (LCIS) are actually at higher risk of developing advanced stage tumors than previously thought. In addition, women with ductal carcinoma in situ (DCIS) who are under 50 years old, African-American or Hispanic are at increased risk of developing advanced stage invasive tumors.

In situ lesions, such as DCIS and LCIS, are early generation cancer cells that have not yet invaded adjacent tissue. The diagnosis of DCIS and LCIS has been increasing up to 7-fold since 1980, according to U.S. statistics. The increase is hypothesized to be due primarily to more screening mammograms and breast biopsies.

The significance of these confined lesions in the course of breast cancer continues to be explored. Current research indicates that DCIS and LCIS clinically have different courses and prognoses, and consequently, should have different treatments. Oncologists recommend surgery for DCIS, considered a precursor to same breast invasive cancer. In contrast, observation after biopsy is recommended for uncomplicated LCIS, which is thought to have little invasive risk but may be a risk factor for later breast cancer. A few small studies have suggested that LCIS has a risk for same and contralateral invasive tumors, prompting some to recommend bilateral mastectomy in high risk patients.

Researchers led by Christopher I. Li, M.D., Ph.D. of the Fred Hutchinson Cancer Research Center in Seattle reviewed data from 37,692 DCIS and 4,490 LCIS patients from 1988 to 2002 to identify demographic and tumor characteristics that are risk factors for invasive disease and the pattern of invasive disease that DCIS and LCIS develop.

One notable finding is that LCIS patients were at greater risk than DCIS patients for invasive lobular carcinoma (ILC), suggesting LCIS to be a precursor lesion to ILC, rather than simply a risk factor. Specifically, LCIS patients were five times more likely to develop ILC and slightly less likely to develop invasive ductal carcinoma (IDC) compared to DCIS patients. The authors also found that LCIS patients had higher rates of ipsilateral invasive breast cancer, but similar rates of contralateral invasive breast cancer, compared to DCIS patients suggesting that "localized treatment for LCIS may be warranted."

Among DCIS patients, women under 50 years old as well as Hispanic and African-American women were at greater risk for advanced stage invasive breast cancer, which is a more lethal form of the disease, than older and Caucasian women. Possible risk reduction strategies, conclude the authors, include increasing the recommended frequency of "screening women diagnosed with DCIS at a young age" and "improving the follow-up and screening of black women and Hispanic white women with DCIS."

This study has potential impact not only on in situ treatments but also risk stratification and follow-up recommendations for women with early stage breast cancer. Article: "Risk of Invasive Breast Carcinoma Among Women Diagnosed with Ductal Carcinoma In Situ and Lobular Carcinoma In Situ, 1988-2001," Christopher I. Li, Kathleen E. Malone, Babette S. Saltzman, Janet R. Daling, CANCER; Published Online: April 10, 2006 (DOI: 10.1002/cncr.21864); Print Issue Date: May 15, 2006.

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Dec 31, 2007 08:32PM awb wrote:

Every time I read this article, I am  glad I convinced my oncologist to let me go for MRI screenings (alternating with mammo every 6 months).  He was concerned about the possibility of false findings that tend to generate anxiety and unecessary biopsies.  Well, I've had what all my docs believe to be "false findings" on my last two MRIs, and while they do cause anxiety, I'd rather be safe than sorry.

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/15/2003 Lumpectomy: Right Hormonal Therapy 10/29/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/4/2005 Prophylactic ovary removal Hormonal Therapy 2/27/2009 Evista (raloxifene)
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Jan 1, 2008 11:44AM - edited Jan 1, 2008 11:54AM by leaf

From what I understand, 'localized treatment' that the Li paper talks about could be just the excision, which I bet most of us with LCIS, at least who were diagnosed in the last few years, have had. They do that to make sure there isn't something worse, like DCIS or invasive hanging around.

LCIS is often found not in the exact place that a suspicious lesion is found, but nearby. And LCIS puts both breasts at risk, not just one (even if the risk is not equal between breasts), and it is often bilateral and multifocal. So it would be pretty hard to remove it all, or know for sure that you are removing it all, without bilateral mastectomies.

I am not a big fan of the ACS after their IMO dumb paper on MRI screening in LCIS women. I found it inconsistent, at best, with respect to their estimation of the lifetime risk of bc for LCIS women. . I don't know if its because it was written by a committee. Their one citation, the Port paper, gave different figures for LCIS risk. ( if you want to see more, you may consider looking at 2nd opinion at major university 14 July 2007 in the High Risk Women section. ) )

Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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