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Topic: Surgical biopsy for LCIS mandatory?

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

Posted on: Jan 10, 2011 11:15PM

GabbyCal wrote:

Hello,

I had a vacuum-assisted stereotactic biopsy due to microcalcifications. Pathology report diagnosed Lobular Carcinoma In Situ. All microcalcifications were removed and tested negative. 

I meet with a breast surgeon for my first consultation following the diagnosis on Wed this week. Does anyone know if there ever is a patient profile that would not require a surgical biopsy as the next step?

If anyone else out there has had this diagnosis and has information to share, I'd appreciate it.

I'm 62 years old. 

Dx 12/23/2010, ILC, <1cm, Stage IB, Grade 1, 0/2 nodes, ER+/PR-, HER2-
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Jan 11, 2011 05:23AM - edited Jan 11, 2011 05:40AM by leaf

There is controversy about this. Some pathology reports don't give any information beyond 'LCIS'; others detail the type of LCIS (such as type A, B, classic, pleomorphic, etc.) This may or may not be important.  (Most feel that pleomorphic has the potential for more aggressiveness than classical.  Most LCIS is classic which includes type A and B.)

Type A pattern: small, round, bland cells; diploid

Type B pattern: larger cells with more cytoplasm, less uniform nuclei and distinct nucleoli  http://www.pathologyoutlines.com/topic/breastmalignantlcis.html

 

Here's another paper about types of LCIS (even more technical) http://labmed.ucsf.edu/uploads/207/100_lobular_breast_cancer_current_issues_%202010.pdf.

 

As I mentioned before, the type of classic LCIS may or may not matter.  (Although I think most believe pleomorphic may be more aggressive.)

Also, different pathologists/pathology labs may have different criteria for different classifications, and one pathologist may describe the cells differently than another pathologist, even if they use the same criteria.

**********

For excision:

27 cases:http://www.ncbi.nlm.nih.gov/pubmed/20637429

This paper recommended excision for NG (nuclear grade) 2+3 . (Pleomorphic is nuclear grade 3.) www.ncbi.nlm.nih.gov/pubmed/20...

http://www.ncbi.nlm.nih.gov/pubmed/18517282

www.ncbi.nlm.nih.gov/pubmed/18...

**********************

Against (at least in certain cases):

www.ncbi.nlm.nih.gov/pubmed/18... (no abstract)

www.ncbi.nlm.nih.gov/pubmed/18... by the American Cancer Society) Excision of LN is unnecessary provided that: 1) careful radiographic-pathologic correlation is performed; and 2) strict histologic criteria are adhered to when making the diagnosis. Close radiologic and clinical follow-up is adequate.

http://www.ncbi.nlm.nih.gov/pubmed/18306873

**********

Controversy means you can't choose wrong! This is your body and your choice.  Make the choice that is best for YOU after you have looked at your heart (how you feel about the choices) and your head (the risks and benefits.)  

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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Jan 11, 2011 12:26PM GabbyCal wrote:

Leaf,

Many thanks for your prompt and well-researched response to my post. I'm optimistic that you've found some research that has shown that excision isn't appropriate in every case. I've been reading and reading since diagnosed on 12/23/10 and it seemed that the overwhelming majority of research recommends excision but the research was based on retrospective reviews of patients who had excision with no review or follow-up of patients who didn't. Good to see there's more research. 

 Speaking of research, it looks like you've done a LOT. Thanks for sharing.

Dx 12/23/2010, ILC, <1cm, Stage IB, Grade 1, 0/2 nodes, ER+/PR-, HER2-
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Jan 11, 2011 01:06PM - edited Jan 11, 2011 01:21PM by leaf

I had a surgical excision after classic LCIS was found on my core biopsy.  I was so terrified, I told the breast surgeon I wanted to make SURE everything was OK.

There *are* some downsides to having a surgical excision (besides possible cosmetic effects - all I have is a small pink scar.)  In my particular case, they didn't find anything worse on the surgical excision.  (Different studies give different numbers, but roughly 20% of the people with LCIS on core biopsy got something worse on surgical excision.)

  On longer term studies, unfortunately I don't know about the stage of bc that the women who started out with LCIS and at least 6 months after got something worse.  I don't see the info in this multi-year SEER study; maybe that data wasn't collected. onlinelibrary.wiley.com/doi/10...  In this small study, no one with LCIS first was diagnosed with anything worse than stage II disease at least 6 months after their LCIS diagnosis. www.ncbi.nlm.nih.gov/pubmed/17... .  But this is NOT your situation; I think most of these LCIS women were excised after their core biopsy (I am not sure of this though.)

A year after my surgical excision, I had 2 more core biopsies, one ALH, one consistent with scar tissue.  *The scar tissue biopsy was inches away from my incision site*.  I eventually got a 2nd opinion at a NCI-certified major institution(mostly to get a clearer picture of my risk of invasive breast cancer.)  They recommended I should *not* get a bilateral mastectomy, nor should I get a MRI, even a baseline one.  That's because I have so much scar tissue. (I have a weak family history with 2 postmenopausal bc cases on 2nd degree relatives on opposite sides of the family.)

I certainly hadn't thought about the surgery causing scar tissue at the time of my surgical excision, bad enough to affect my imaging choices.

I will be seeing a new onc this next visit in Feb. (My original onc retired.)  I don't know, of course, her feelings about MRI screenings.

If you don't have a written copy of your pathology report, I'd certainly want to get one.   You may make different choices if you have pleomorphic LCIS, or if there are outstanding imaging abnormalities that do not correlate with your cores.   I think, as you say, most people do end up getting excised, but some do not.

Almost everything about LCIS is controversial, including the name.  No matter what your choice is, it will have some impact on your subsequent care.  But there is no Right or Wrong choice.

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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Jan 11, 2011 09:52PM Jenna1961 wrote:

I have to chime in again leaf - I feel like atypia-removal advocate already.
I don't see why would anyone agree to keep abnormal cells in their body, let alone cancer (which LCIS is). Those cells multiply and change/mutate.  I would (re)excise any atypia until they get everything abnormal out. It is just a common sense. Of course, it would be the best to have it all removed at the first try/excision.
I admit being bitter because my surgeon did not do it (...). Also, I would not regret much losing the imaging choices. Sometimes it is not reliable anyway. At all my stages, from ADH to invasive, nothing was visible on mamo, US or MRI.
Here I cite again the Mayo clinic about atypia (and more so for LCIS) : "Atypical hyperplasia is generally treated with surgery to remove the abnormal cells and to make sure no in situ or invasive cancer also is present in the area. ..etc. ".  As you can see, they do not even make difference between lobular and ductal.

Jenna

June 2009: DCIS 6cm+ ER+ with microinv; 1/15 nodes micromet ER- PR- HER2+; Left Mast 7/2009 Chemo Sep 09: 4xAC + 4xTH + H full year
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Jan 12, 2011 02:28AM - edited Jan 12, 2011 11:15AM by leaf

Well,Jenna, I think  LCIS is different from DCIS.

I'm sorry that apparently your initial diagnosis was atypia, and you ended up having to undergo extensive treatment.

Many people, such as this reference from Stanford, do not believe LCIS is cancer. Although the name includes the term carcinoma, lobular carcinoma in situ (LCIS) is not really cancer, but rather a noninvasive condition that increases the risk of developing cancer in the future.cancer.stanford.edu/breastcanc...

Note that you said  "Generally". That implies not always.  Maybe GabbyCal is one of those exceptions, and maybe she's not.

I see nothing on the Mayo site that says LCIS must be excised. www.mayoclinic.com/health/lobu... 

I am not a radiologist, and I don't know if GabbyCal's radiologic findings correlate with her pathology/histology.  Maybe they do, and maybe they don't.  The American Cancer Society paper www.ncbi.nlm.nih.gov/pubmed/18... opines Excision of LN is unnecessary provided that: 1) careful radiographic-pathologic correlation is performed; and 2) strict histologic criteria are adhered to when making the diagnosis. Close radiologic and clinical follow-up is adequate.

Lobular carcinoma in situ (LCIS) is an uncommon high-risk lesion of the breast, often diagnosed as an incidental microscopic finding in tissue removed for other mammographic finding, and is usually adjacent to, but not within the mammographically depicted lesions. http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B7583-4BWYCRM-3&_user=10&_coverDate=05%2F31%2F2004&_rdoc=1&_fmt=high&_orig=search&_origin=search&_sort=d&_docanchor=&view=c&_searchStrId=1604230973&_rerunOrigin=google&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=2062540616af696eb2d3eda1bc0e8b9e&searchtype=a 

Strictly speaking, it <LCIS> 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....Most women with LCIS have disease that can be managed without additional local therapy after biopsy. No evidence is available that re-excision to obtain clear margins is required. www.cancer.gov/cancertopics/pd...

(All emphasis is mine.)

 The majority of breast cancer that LCIS women subsequently get are NOT clonally related to their LCIS.  The remaining two cases of ILC and all 4 IDC were clonally unrelated to the previously diagnosed LCIS. While the overall risk for the development of invasive breast cancer following LCIS is relatively low and the majority of cases are clonally unrelated, our data clearly show that some LCIS eventually do progress to ILC. Thus, LCIS represents both an indicator lesion for an increased risk of subsequent invasive breast cancer and in some cases a precursor of ILC. http://www.ncbi.nlm.nih.gov/pubmed/17380381

Because LCIS is usually only an *incidental* finding at a biopsy, they don't know where to look for it.  It is difficult to study because we don't know where it is without biopsing it.  If we biopsy it, we remove that focus, or part of that focus, of LCIS. Since its often multifocal and bilateral, if we biopsy the entire breast, that's a mastectomy.  They don't routinely do mastectomies for EVERY early stage INVASIVE breast cancer. 

Excision after finding LCIS on a core biopsy is done NOT in order to remove the LCIS.  They have no idea where additional LCIS might be. Excision after LCIS found on a core biopsy is to find out if there is something worse in the area. The description of my surgical excision after my LCIS core was "Verification of LCIS diagnosis."

LCIS is a weird disease (in my opinion.)

There ARE some authors in medical journals that feel SOME cases of LCIS do not need to be excised. Others think all LCIS should be excised.  Just about everything concerning LCIS is controversial, including the name.

I chose to get excised, but other people may make other choices. I am glad I got excised, but wish the breast surgeon didn't move all of my breast tissue around because now, according to one opinion, I should not get screening MRIs.   Most women with LCIS NEVER go on to get breast cancer.  You may or may not agree with those opinions or choices. Some women that have a deleterious BRCA mutation, with a lifetime risk of breast cancer of ~90% choose not to have prophylactic mastectomies, and some of them do not get breast cancer. Different people have different circumstances. 

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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Jan 12, 2011 05:31PM sptmm62 wrote:

Hi Gabby: 

I had a 3 cm tumor that on biopsy was diagnosed as LCIS.  The breast surgeon recommended that it be removed even though it was "just LCIS".  Luckily I agreed because on pathology after it was removed it was revealed to have an underside that was completely ILC, or invasive cancer.  So, I don't know if it is routine to remove LCIS, however I am very glad that I did or I would still be walking around with cancer in me and who knows how far it would have travelled before it was finally found to be what is really was.  I would go with the recommendation of the surgeon, and if you are not comfortable with that surgeon, get a second opinion.

Surgery 5/8/2010 Lumpectomy: Left Dx 5/18/2010, ILC, 3cm, Stage IIB, Grade 2, 2/2 nodes, ER+/PR+, HER2- Surgery 7/1/2010 Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary Chemotherapy 7/30/2010 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 10/19/2010 Breast, Lymph nodes Hormonal Therapy 1/17/2011 Hormonal Therapy 2/17/2012 Arimidex (anastrozole) Surgery 10/23/2012 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Jan 13, 2011 02:37PM Jenna1961 wrote:

leaf,
I admit, my fear has a bit of irrational because of what happened. After the ADH was found via core biopsy, my surgeon let me decide whether to further investigate or to do "watchful waiting" for six months.  An excisional would have saved me.
I know LCIS is different from DCIS - it is at the level of initial atypia when it does not matter lobular or ductal regarding the risk reduction strategies.
June 2009: DCIS 6cm+ ER+ with microinv; 1/15 nodes micromet ER- PR- HER2+; Left Mast 7/2009 Chemo Sep 09: 4xAC + 4xTH + H full year
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Jan 13, 2011 05:54PM - edited Jan 13, 2011 05:55PM by Beesie

Jenna, I understand your frustration with what happened to you.  In my case, I was lucky - after my ADH was found, my BS strongly advised that I have the excisional biopsy.  And that's when I was diagnosed.

While I understand where your concern is coming from, I don't agree with your statement that "it is at the level of initial atypia when it does not matter lobular or ductal regarding the risk reduction strategies".  The ADH cell is a premalignant cell. It is the ADH cell itself that might convert to become DCIS.  Therefore it is usually recommended that the entire area of ADH be removed to ensure that no DCIS has already developed in that area. From my understanding, LCIS is different. As stated in the article that leaf included in her post, LCIS is "a marker that identifies women at an increased risk for subsequent development of invasive breast cancer." The cancer may develop anywhere in either breast. So it's not just in the area of LCIS where the cancer might develop; the cancer might develop anywhere. Given that, what's the value in removing the area of LCIS that happens to have been found?

I'm not suggesting that there might not be value in some cases to removing the area of LCIS, even if the value is mostly peace of mind, but from my understanding there is a distinct difference in how ADH develops into BC versus how LCIS develops into BC and that difference needs to be considered when developing risk reduction strategies.  So while I agree that excision makes sense in most if not all cases of ADH, I'm pretty sure that if I was diagnosed with LCIS, I would not have an excision. 

Sorry to intrude on the LCIS forum. And leaf (and others who know much more about LCIS than me) please correct anything I've said that isn't accurate.  

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jan 13, 2011 11:56PM - edited Jan 14, 2011 12:28AM by leaf

I think was Bessie was basically right explained it much more clearly than I do, but it may be more complex.    I think most people do recommend ALL patients with LCIS and nothing worse on a core biopsy get it surgically excised.  But a few papers opine that SOME patients with LCIS and nothing else on a core do not have to be excised.  Bessie certainly knows a ton more about DCIS than I do, and explains things in a much clearer way than I do.

Its a real hard issue to study.  Most women with a core biopsy of LCIS will have other spots of LCIS in either breast. Most of the time, the only way we can tell the position of those additional LCIS spots is by biopsy, not imaging. If you biopsy the spot, you remove that spot.  

But, since you have not biopsied ALL the breast tissue (even if you have mastectomies), you will never know if and where there are additional LCIS spots.  So, number one, we can NOT remove all the LCIS, even if we wanted to do so.

Most women who have LCIS on a core biopsy who also go on to get invasive breast cancer get invasive breast cancer in an area that looks normal and apparently did not contain LCIS.  We can't tell if there was NO LCIS there  for sure because we would have had to biopsy that spot before it developed invasive breast cancer (and thus remove that area to be sure).  

So LCIS often seems to act 'at a distance'.  There is some factor about breasts with LCIS that puts that women at increased risk for breast cancer anywhere in both breasts. Its a weird disease (in my opinion.)

But there are more unknowns.  I even found one paper that opined that LCIS and DCIS had some genetic defects in common, and so had  a common precursor!  I have a lot of appointments the next 2 weeks, so I can't  go back and find it right now.  I'll try in the next several weeks.

But, yes, I think they basically believe that LCIS is a marker that identifies increased risk of breast cancer - not only at the spot that LCIS occurs, but throughout both breasts.    While in a SMALL number of cases, the LCIS itself may develop into something worse,  in most cases the subsequent invasive breast cancer is NOT clonally related to LCIS, thus may not have developed from the LCIS spot.

When they biopsy mastectomy specimens, they can't look at ALL of the excised breast.  They have to sample it.  So they don't know exactly how many spots of LCIS there were in it.  

In several papers, they couldn't select out the women with LCIS who would go on to get worse. 

I think most papers DO support the idea of surgically excising all LCIS cores (where nothing else is found.)  Period.  A few papers say that if there are NO imaging abnormalities around the LCIS core, and the histology matched the imaging precisely, then IN THOSE CASES, you may not need to excise.

I chose to excise, and I think most people with LCIS do chose to excise, but there are some medical journal authors that think that in SOME selected people, they may not need to excise.  I think this is maybe a minority opinion, but one of those minority opinions is an American Cancer Society sponsored paper.

If you excise a place that only showed LCIS and nothing worse on a core biopsy, you are excising not to remove the LCIS, but to see if there is something worse in the area.  In about 20% of surgically biopsied cases, you will find something worse (DCIS or invasive).

I sure wish I had Bessie's ability to speak clearly.

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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Jan 14, 2011 03:06AM - edited Jan 14, 2011 03:15AM by Jenna1961

I could not find anywhere the difference between ductal and lobular atypical hyperplasias treatment and risk reduction strategies - including the printout from the official source at our family doctor office.
At the beginning, the article explains the difference between these two conditions depending on the location of abnormal cells - and that is all. After that, it refers to both just using the term atypical hyperplasia or AH. At Mayo, both pages link to the same "Treatments and drugs" .
By the way, I never asked my oncologist and it may sound silly - was my DCIS actually a strange DCIS/LCIS combination ? Before mastectomy, I had nothing else in my breast than one huge hard disc of solid tissue.
June 2009: DCIS 6cm+ ER+ with microinv; 1/15 nodes micromet ER- PR- HER2+; Left Mast 7/2009 Chemo Sep 09: 4xAC + 4xTH + H full year
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Jan 14, 2011 04:08PM leaf wrote:

This recent paper opines: The diagnosis of atypical epithelial hyperplasia (AEH) increases with breast cancer screening. AEH is divided in three groups: atypical ductal hyperplasia, columnar cell lesions with atypia, lobular neoplasia. The management of women with AEH is not consensual because of uncertainty about their diagnosis related to the type of the biopsy sampling (core needle biopsy or surgical excision) and their controversial clinical signification between risk marker and true precursor of breast cancer. http://www.ncbi.nlm.nih.gov/pubmed/19853386

This paper recommended excision more strongly for ADH than for ALH. The atypia was classified into 4 categories: atypical ductal hyperplasia (ADH), atypical lobular hyperplasia (ALH), flat epithelial atypia (FEA), and atypia of undetermined significance (AUS). After a tutorial session, these cases were independently reviewed by four pathologists, whose overall multi-rater kappa value for agreement on different categories of atypia was 0.79 (95% CI, 0.69-0.89), which is within the substantial agreement range. The upgrade risk in each category of atypia was as follows: ADH 20% (p = 0.04); ALH 10% (p = 0.6); FEA 16.6% (p = 0.23), and AUS 100% (p = 0.96). Based on our findings, we conclude that follow-up excision should be performed after a diagnosis of ADH. The upgrade risk did not reach statistical significance in ALH or FEA. Although follow-up excision cannot be strongly recommended in ALH and FEA, it should be considered since the upgrade risk is not negligible. Strict adherence to the diagnostic criteria and tutorial sessions can help pathologists to achieve substantial agreement in interpreting atypia on breast core needle biopsies.http://www.ncbi.nlm.nih.gov/pubmed/19667411

This paper recommended surgical excision for ADH, ALH, and LCIS to exclude the possibility of cancer  www.ncbi.nlm.nih.gov/pubmed/16... as does this study. http://www.ncbi.nlm.nih.gov/pubmed/16687097

This 2007 paper opined  Women with AH in a benign breast biopsy were at a substantially increased risk for the development of breast cancer. Among premenopausal women, the risk appeared to be greater for those with ALH than those with ADH. Because only approximately 60% of cancers that develop in women with AH occur in the ipsilateral breast, for the purposes of clinical management, these lesions are viewed best as markers of a generalized (bilateral) increase in breast cancer risk.http://www.ncbi.nlm.nih.gov/pubmed/17154175

(All emphasis is mine.)

So to me it sounds like, at least for some authors, there is some controversy about whether or not to excise atypia.

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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Jan 14, 2011 11:45PM Jenna1961 wrote:

Oh, now there is AEH too!  Thanks leaf for the information.

I wonder how our oncologists will adapt to all the recent advances in pathology of BC. Hope there is not going to be even more controversies ...

June 2009: DCIS 6cm+ ER+ with microinv; 1/15 nodes micromet ER- PR- HER2+; Left Mast 7/2009 Chemo Sep 09: 4xAC + 4xTH + H full year
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Jan 16, 2011 01:54PM - edited Jan 16, 2011 01:55PM by leaf

Hope there is not going to be even more controversies ...

I hope so too, but I somehow doubt it. LCIS (with nothing worse), even with the increased number found in recent years, is still considered an 'unusual' finding.

This 2004 abstract opined that regarding the NSABP study (The current report represents a 12-year clinicopathologic update of an earlier 5-year analysis of 180 patients with lobular carcinoma in situ (LCIS) who were treated with local excision and subsequent surveillance only.)...Overall, only 26 IBTRs (14.4%) and 14 CBTRs (7.8%) were observed. Nine IBTRs (5.0% of the total cohort) and 10 CBTRs (5.6% of the total cohort) were invasive carcinomas...  the authors acknowledge that their findings are based on relatively few events and, even at 12 years, may be regarded as "preliminary". www.ncbi.nlm.nih.gov/pubmed/14...  (emphasis mine.)

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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Jan 19, 2011 12:52PM msippiqueen wrote:


100 % of ILC arises from LCIS which evolves from AHL.

Current thinking seems to be that some LCIS may sit still and is a marker for ILC or other cancers of either breast. Or it will progress to ILC and all the trauma and uncertainy that involves. Additionally, most women with with Stage IV disease were diagnosed at an earlier stage. Serious consideration.

Mastectomies reduce the chances of breast cancer to the low single digits and do not require additional screening or meds or rads to be that way.

With the science of breast cancer in it's infancy, of course much is not known, any treatment is crude and women have tough choices.

Recommendations will change as knowledge increases and the investigation into pre cancers or in situ cancers increases. Especially in the lobular aspect of the duct and other less commonly diagnosed and understood breast cancers. Oncologist, pathologist and radiographers disagree when looking at the same woman's breast. It's common. Adds to the difficult of decision making.

I had emotions well up in me that were new and came from nowhere. Those feelings play a roll in decision making also. That's also common.

Being the beneficiary of early stage detection is a remarkable gift. I had three institutions and their various professionals tell me my condition was ALH with ductal hyperplasia in dense (post menses) breast all the way to three cancers in one breast, one with aggressive tendencies. Talk about whip lash! Final path still varied from two pathologist with dx being AHL, the other LCIS. Everyone would be so lucky if I had a say.

Having a bilaral for me means no additional biopsies (and more scar tissue) no screening, no rads, no meds. Cancer being reduced to the single digits. No more trying to figure who's right in any given time. Respected Ocologist and other pros disagree.

















Support a woman's right to choose...mastectomy. Dx 4/28/2010, LCIS, <1cm, Stage 0
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Jan 20, 2011 05:25PM Crescent5 wrote:

I respect all the well researched posts. Personally, most of that stuff just goes over my head, so I'm just going to answer your question from a personal standpoint. I didn't want to do the ex. biopsy after the needle came back with LCIS. I didn't see the point of putting my body through  that. But after a week of reading and researching, the question really became why wouldn't I want to know for sure?

I had a baseline MRI first and then the surgical biopsy. I dreaded the whole thing. But it was very easy. It was a lot easier than laying there awake on the table while the radiologist shoved tiny vacuums into me. I was home at noon. It turns out that I did not have invasive, but I do have PLCIS. It puts a whole different spin on things now. Had I not found that out, I'd be going around blissfully unaware that I have something a little more dangerous than LCIS.

You have to do what's best for you. Some opt not for the surgery. Most go for it. It's up to you. All I know for sure is that I don't want to hear. "you have invasive cancer." But if I have to hear it, I want it to be the earliest possible stage.

I wish you the best.

Dx: ALH, LCIS 10/10, PLCIS 11/10 ~ PBM 1/13/12 ILC 4mm & 7mm found post MX Stage 1 Grade 2 ER/PR+ HER2- 0/9 nodes Oncotype Score = 6, Tamoxifen 4/12 ~I want this sh*t to leave me alone Dx 1/13/2012, ILC, <1cm, Stage IB, Grade 2, 0/9 nodes, ER+/PR+, HER2-
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Jan 24, 2011 09:38PM katzdo wrote:

I agree with Crescent5.  I was diagnosed with LCIS the end of Dec '10 and it sounds like I am going this same route. My doctor, whose a breast surgeon who specializes in breast cancer, said that it should be removed. He said that it is usually recommended since a small percentage get upgraded to something else as well.  I have a mother who had breast cancer (post menopausal) and a maternal grandmother who died form it (most likely either pre-menopausal or on the cusp). I asked for an MRI, which he thought was a good idea to make sure there is nothing else going on that needed to be dealt with. I have surgery scheduled for the end of Feb.  My LCIS was discovered accidentally when they needle biopsied 3 lumps. They were all fibroadenomas, but 1 had LCIS on the outskirts.  I would rather have scare tissue and know that something isn't lurking for a year or 6 months til my next exam. 

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Apr 28, 2019 03:06PM fiddlendaydream wrote:

I'm brand new to this board so hopefully I'm doing this correctly. I just (3 days ago) had a some areas removed from both left and right breasts after biopsies from Febuary showed: FEA with microcalcifications ,LCIS/ALH in one part of my right breast and ADH with microcalcifications in another part of my right breast and ALH in my left breast. Now, I'm waiting for the report which I'll receive in a week. Prior to surgery they discussed putting me on Tamoxifen, I'm not going to lie this medication scares me. Do I really need it? Should I seek a second opinion? I was so tempted to go with a bilateral mastectomy, but opted for the lumpectomy. Did I make the right decision? It doesn't appear that any of these are even pre-cancer. Thank you for reading.

ALH, ADH, FEA and LCIS in both breasts. "Be Stronger than Your Strongest Excuse" Dx 2/25/2019, LCIS, Both breasts Surgery 4/25/2019 Lumpectomy: Left, Right
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Apr 28, 2019 07:04PM Moderators wrote:

fiddlendaydream, welcome to Breastcancer.org! Unfortunately this thread you posted on has been quiet for quite a while, so it's unlikely you'll get responses here... We would suggest you join in some of the newer threads which are way more active, or you start your own new topic. In the meantime, you can read much more about Getting a Second Opinion at the main Breastcancer.org site, including why, where and when to get them, and what to expect.

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Apr 29, 2019 12:07AM - edited Apr 29, 2019 12:21AM by Lea7777

Saw your other post too. This may be old but your question is current and timely.

Prior to surgery they discussed putting me on Tamoxifen, I'm not going to lie this medication scares me. Do I really need it?

Tamoxifen, or one of the other several drugs available to reduce the risk of breast cancer in high risk women, cuts the risk by about half or more. I believe most women do not take the drugs based on what I have researched. There is a big push to get more high risk women to use these drugs to reduce risk but it is not the majority that take the drugs and I have seen figures as low as 1 in 7. My suggestion, and the course I have followed, is try the drugs. If one has unacceptable side effects, move on to the next. Some people tolerate them well; others do not. You won't know unless you try. If you are unable to tolerate any of the drugs, then at least you know you gave them a shot.

More common than drugs is closer surveillance, like every 6 months. Maybe alternate MRI and mammogram.

I was so tempted to go with a bilateral mastectomy, but opted for the lumpectomy. Did I make the right decision? While that is always a personal decision, I cannot imagine anyone removing their breasts immediately after these diagnoses of atypia, before the excisional biopsy results are even in. The decision you made still allows you to choose a bilateral mastectomy in the future, so you have maximized your options. I would say yes you made the right decision. It is the one I made for now.

The tons of research I have done indicate the preferred treatment plans for your (our) conditions are: increased surveillance or the endocrine therapy drugs (like Tamoxifen) or both surveillance and drugs. I am doing the both, having rejected 3 drugs for intolerable side effects. I recovered fully from the side effects of those rejected drugs after 30 days or less once I was off the drug. I am on drug #4 now without too many problems. At this stage it is a keeper for me. Bilateral mastectomy for LCIS is sometimes recommended if you ALSO have a strong family history of cancer or have had genetic testing that shows you have the BRCA gene.

Still, there are women who opt for PBMX (prophylactic bilateral mastectomy) for the diagnoses you have and it seems they are pleased with their decisions. But that is not the standard treatment.

A good piece of advice that a nurse practicioner at a high risk breast clinic gave me for a diagnosis of LCIS, ALH, ADH was to do the heightened surveillance for one year and see how you feel. During that time you can do your own research, ask questions, and just collect your thoughts after an unsettling diagnosis. With atypia you have time on your side and do not need to decide anything right away.

Should I seek a second opinion? It always is useful to have a second opinion, IMO, and I have gotten them for every biopsy I have had. The pathology is double checked which is reassuring and you get to interact with another health professional to get their opinion of your situation. Two benefits.

The week's wait is the worst part. I hope the time passes quickly for you. 80% of all breast biopsies are not cancerous, so the odds are with you and the fact that you have several kinds of atypia does not alter those 80% odds. Like you, my biopsy showed a lot going on in my breasts and my concern was that it increased the odds of cancer being found on the excisional biopsy, but my surgeon assured me I still had 80% to the good.

Hoping you get a good report.


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Apr 29, 2019 11:37AM - edited Apr 29, 2019 11:38AM by Stherye

ALH and ADH are considered precancers (not cancer yet but atypical cells)

FEA is considered pre-pre cancer an I decided to have a pbmx only because of FEA. Although it is a very personal decision and I know it is overtreatment I decided to do it and my gyn supported my decision telling me if she were on my shoes, she would do the same.

My main reasons were I am a worrier, I was going to be always worried, I am young and I have children. And now 6 months out from pbmx, I think it is the best decision I have made in my life. The results are amazing, my breasts look like prettier than before. Other reasons were reading through these forums and realizing I was at high risk. Also because I don't want to take tamoxifen.

Of course this route it is not for everybody, you need to be absolutely sure.

Hugs

Intraductal Papilloma with FEA - 2018 Surgery 10/18/2018 Prophylactic mastectomy: Left, Right
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Apr 29, 2019 09:29PM fiddlendaydream wrote:

Thank you for your replies. It's all so confusing. I wish they would just call with the results as soon as they had them, I'm sure no cancer will be found but there is still always that question. It doesn't help that I'm still exhausted from the surgery (I think the anesthesia) I guess it was a 3 hour surgery to remove the masses in both breasts and I went back to work today (I'm a string ensemble teacher in a public school).

It does help to read everyone's experiences.

Thank you so much

ALH, ADH, FEA and LCIS in both breasts. "Be Stronger than Your Strongest Excuse" Dx 2/25/2019, LCIS, Both breasts Surgery 4/25/2019 Lumpectomy: Left, Right

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