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Topic: LCIS I am so confused!!

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

Posted on: Nov 29, 2012 03:11PM

Shelton wrote:

I was just diagnosed with this LCIS after a biospy for micro calcifications.. Radiologist report says Birads 6.. Biospy proven malagnancy.. GYN says Stage 0 Breast cancer, one breast surgeon says this has a possibility to become invasive but you follow it closely,,is a bilateral disease.. Mine is very small as I have a mamogram every year... My next Breast surgeon says she has never seen LCIS "in situ" turn into invasive breast cancer,,, American Cancer society says so and my risk is 10-20% in my life time, I am 52.. Both breast surgeons disagree with the radiology report.. Needless to say I am confused and have read about bi-lateral masectomy and understand this would be drastic (I can afford to pay for it without insurance) any opinions or comments would be appreciated..

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Nov 29, 2012 05:02PM awb wrote:

Shelton-----I was diagnosed with LCIS  (also by a biopsy for microcals) over 9 years ago and my risk is further elevated by family history of bc (mom had ILC). I  had a lumpectomy (which confirmed the LCIS and fortunately no invasive bc was found), took tamoxifen for 5 years, and now take evista for further prevention; I also continue with high risk surveillance of alternating mammos and MRIs every 6 months with breast exams on the opposite 6 months. (one done by gyn, one done by oncologist). Your doctors are correct---LCIS is stage 0, in-situ non-invasive bc (cancer cells contained in the lobules that have not spread into the surrounding breast tissue); it does have the potential to become invasive, but this is very very low; my breast surgeon quoted < 5%. so since the potential to become invasive is so low, most look at it as more of a marker for high risk rather than a "true" cancer. It is also true that it most often is found to be a bilateral disease, also multicentric and multifocal (if you have it in one breast, most likely  you have it in the other one and it can be widespread).

What exactly do the 2 breast surgeons disagree with regarding your radiology report? Mine was classified as BIRADS 5 and they used the wording "malignant" in my pathology report to describe what they saw. Even with my family history, all my docs felt PBMs too drastic, but I think what it basically comes down to is personal choice----you have to decide what is best for your particular situation (hopefully with the help of your medical team)---monitoring closely (with or without preventative meds) or bilat mastectomies. every choice has it's own pros and cons and it's own SEs and consequences for your life. For me, my choice to do surveillance and preventative meds  was and continues to be the right choice for me, but I am always open to  reconsider PBMs if anything more were to be detected. Fortunately, I have not needed to have any further biopsies or lumpectomies in all these years.

feel free to PM me if you'd like.

Anne

"I don't know what the future holds, but I know who holds the future"

Dx 9/5/2003, LCIS, Stage 0, 0/0 nodesSurgery 09/16/2003 Lumpectomy (Right)Hormonal Therapy 10/30/2003 TamoxifenSurgery 04/05/2005 Prophylactic Ovary Removal (Both)Hormonal Therapy 02/28/2009 Evista
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Nov 29, 2012 11:46PM beacon800 wrote:

It's a confusing problem to have!  I feel like your BIRADS 6 is overkill.  I never got rated above 4, even though they knew I had LCIS. 

There certainly are people who had LCIS and later had invasive cancer.  We see quite a few on these boards.  But there are also many who never progress to invasive.  That is the trouble - you never know which group you are in.

With classic LCIS you will likely have  a wider excision to remove as much as possible and then take tamoxifen for 5 years.  Along the way you will have high surveillance breast care, meaning Mammo/MRI alternating and clinical exams. 

It's a super personal choice as to whether to do a bilateral MX.  I did go that route and with no regrets.  But I had a higher grade of LCIS (called pleomorphic LCIS), an unattractive family history and some other risk factors.  I weighed it all and felt I just would kick myself if I didn't take the bold action.

BTW, my insurance  paid for it in full (CIGNA).  I got a preapproval with no trouble.

LCIS, PLCIS.

Dx 7/24/2009, LCIS, Stage 0, 0/0 nodes, ER+/PR+, HER2-
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Dec 1, 2012 10:05AM Crescent5 wrote:

Breast surgeon says she has never seen LCIS "in situ" turn into invasive breast cancer

Well, that's because it really doesn't do that. LCIS is generally thought of as a marker or red flag suggesting you are at higher risk for getting invasive BC in your lifetime than the average woman. I disagree with the 10% chance since the average woman has an 8-12% lifetime risk. Unfortunately, you are no longer an average woman in the BC world. The good news is that you will likely get excellent care and superior observation. The bad news is you will never escape this red flag. It will be with you forever.

What pissed me off most about LCIS stats was that with each year, my chances of getting BC actually went UP. So each time I heard, "all clear," I was glad for about a day and then I got to worry again.

But my feelings were perhaps prophetic since I did end up with invasive. I have been to hell and back this year, but I am oh so glad to be off the roller coaster. So glad! My choice (PBM) is not for everyone. I also take tamoxifen because of the ILC, and I have to say it's not as bad as I thought. Not at all! It's a heck of a lot easier than PBM. However, that too never really ends. After your 5 years of Tamox are up, you have 5 years of something else.

You're right. This stuff is confusing at heck. I'm a little annoyed with some medical professionals who like to pat our heads and say, "it's really not that bad." It's not that bad, but it's damn serious. We're not babies. We can handle reality. Unfortunately with LCIS, we often have to learn that reality on our own.

Best of luck to you.

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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Dec 12, 2012 11:50PM, edited Dec 12, 2012 11:51PM by horselady52

I have been recently dxed with DCIS and LCIS via steotactic core bx. Lumpectomy for the calcs with DCIS next week. Now I am confused because I just read someone's post that they had wide-excision surgery for LCIS. My surgeon stated that LCIS is not even treated as she does not consider it a threat at all. Anyone else have a comment on this? Now I am really confused!

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Dec 13, 2012 01:38AM Astrid wrote:

Hi Horselady.Smile

it is confusing. can be daunting get your head around everything.

As written above, LCIS can be regarded as a 'red flag' a warning to watch carefully.

Whereas DCIS does very often spill out of your cells, and turn into invasive cancer.

I find it interesting though, that there is usually LCIS spill around an area of ILC anyway.

So, it might be good to search out, or ask your Oncologist for more detail as to exactly why.

The main thing right now, is that they are treating you, and will keep a good close eye on you in the coming years as well.

I want to wish you all the best for you surgery.

It's such a lot to take in.

My advice would be, write down any questions you think of, so that at your meetings with surgeon/Oncologist, you can ask away. It's easy to be overwhelmed at the time, and forget what you want to know.

Big hug, and remember,

you are not alone with this. :-)

xx

Astrid.

2002:IDC, double mast & axilla clearance, chemo. 2003: recurrence left mast.IDC. rads. 2011:reconstruction 2012: recurrence right mast side ILC. rads.

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Dec 13, 2012 07:54AM loriio wrote:

Hi Horselady. There are a lot of women on this board who are very knowledgable about LCIS and hopefully one of them will post soon. I had an excisional biopsy for LCIS and that seems to be common. At the very least, I'd discuss it with her further. I was told that at the very least, LCIS requires high risk monitoring going forward. A lot depends on your family history and your health history.
Good luck!
Lori

Adopt the pace of nature: her secret is patience. ~Ralph Waldo Emerson

Dx 3/1/2012, LCIS, Stage 0, 0/0 nodes, ER+/PR+, HER2-Dx 7/2/2012, ILC, <1cm, Stage I, ER+/PR+, HER2-Surgery 03/20/2012 Lumpectomy (Left)Surgery 06/26/2012 Mastectomy (Both); Reconstruction: Tissue expander placement (Both)Surgery 12/04/2012 Reconstruction: Breast implants (permanent) (Both)
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Dec 14, 2012 07:43PM awb wrote:

horselady-----when diagnosed with both DCIS and LCIS, your treatment will be focused on the DCIS as it is the more serious of the 2.  (Will you be having any radiation or taking tamoxifen? they are both frequently recommended for DCIS, depending on the specifics of your particular situation; radiation is  not given for the LCIS, but tamox is recommended for it as a preventative medication).  A wide excision lumpectomy (which I had when diagnosed with LCIS over 9 years ago) is done to make sure nothing else is lurking in there along with the LCIS---- (your  "something else lurking" was DCIS and has already been found).   While LCIS is also a  stage 0, in-situ non-invasive bc, it is not generally considered to be a "true" cancer, as it's potential to become invasive is so very low. It is thought more to be a high risk marker for risk for future bc. However, it does put both breasts at high risk. So the radiation is given for your DCIS, the tamoxifen will be needed for both your DCIS and your LCIS. I took tamox for the full 5 years and now take evista for further preventative measures; I continue with high risk surviellance of alternating mammos and MRIs every 6 months; I have not needed any further biopsies or lumpectomies in all these years. Feel free to PM me with other questions if you'd like.

Anne

"I don't know what the future holds, but I know who holds the future"

Dx 9/5/2003, LCIS, Stage 0, 0/0 nodesSurgery 09/16/2003 Lumpectomy (Right)Hormonal Therapy 10/30/2003 TamoxifenSurgery 04/05/2005 Prophylactic Ovary Removal (Both)Hormonal Therapy 02/28/2009 Evista
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Dec 15, 2012 09:48PM auntiems3 wrote:

Shelton-Anytime the word "malignant" comes into play, it would be a red flag.  I was diagnosed with ALH, Atypical Lobular Hyperplasia, 5 years ago.  Since then , I have had 4 biopsies,  3 in the left breast and one in the right.  Yesterday I met with a breast surgeon who had my pathology slides reviewed by the department at Penn University Hospital in Philadelphia.   They agreed with my small town hospital that I had LCIS on the left, but that my right breast biopsy was negative.   The Phila. BC said if it had been anything else, they would have done a lumpectomy to clear any abnormal findings. 

None of my biopsies were considered malignant....only abnormal...LCIS is a marker which increases the chances of developing into invasive cancer anytime in the future. Adversely to the tune of one of your Docs, LCIS CAN develop into ILC which is invasive lobular cancer. 

Based on the recommendation of my first breast cancer surgeon (in our small town) and that of a highly recommended breast surgeon in Phila.,  I have opted to move forward with a PBM in 2013.

As an LCIS patient,  a biologist (MS in Biology, minored in Chemistry), and a former medical practitioner ( Radiologic Technologist) , I would recommend that you follow up on some current research into LCIS and ILC.  Have your breast surgeon send your pathology slides to an expert in the field.  Mine were sent to David Page at Vanderbilt University.  Trust me, I have read his research in the field.  He is the leading authority in ALH and LCIS.

I wish you Godspeed in your search for answers to the questions you post.

Sincerely, Marie

Dx 6/2007, LCIS, Stage 0, 0/0 nodesDx 4/8/2013, LCIS, 0/3 nodesSurgery 05/10/2008 Lumpectomy (Left)Surgery 05/17/2010 Lumpectomy (Left)Surgery 05/15/2013 Prophylactic Mastectomy (Both); Reconstruction: Tissue expander placement (Both)
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Dec 15, 2012 11:02PM MelissaDallas wrote:

Also, LCIS doesn't just up your risk for invasive lobular cancer - it increases your risk for invasive ductal cancer too.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.

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Dec 20, 2012 07:35PM rosyFL wrote:

Marie,

Do you have a link to Dr. Page's research on LCIS?  I'd be interested in what he has to say, since there really isn't much out there about LCIS. 

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Dec 21, 2012 12:12PM, edited Dec 22, 2012 08:42AM by leaf

This Post was deleted by leaf.

If you're going through hell, keep going-Winston Churchill

Dx 12/8/2005, LCIS, Stage 0, ER+/PR-Hormonal Therapy 07/15/2006 Tamoxifen
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Dec 21, 2012 08:29PM auntiems3 wrote:

http://www.ncbi.nlm.nih.gov/pubmed/16894523  

Hi RosyFL.  Here is just one of the research articles I am familiar with.  Dr DL Page is linked to many others, many which you can download free from PubMed.

Marie

Dx 6/2007, LCIS, Stage 0, 0/0 nodesDx 4/8/2013, LCIS, 0/3 nodesSurgery 05/10/2008 Lumpectomy (Left)Surgery 05/17/2010 Lumpectomy (Left)Surgery 05/15/2013 Prophylactic Mastectomy (Both); Reconstruction: Tissue expander placement (Both)
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Dec 22, 2012 02:05PM rosyFL wrote:

Thank you for the link for Dr. Page.  I see I will have lots of reading to do, but from several things I've read, I can see I could be in trouble just from reading several of his writings.

I am wondering how long I might have already had these findings before the microcals showed up and called for the biopsy?  I guess I'll never know this.  I'm not happy.

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Dec 23, 2012 11:18AM, edited Dec 24, 2012 06:47AM by leaf

No, I'm sorry Rosy; with our current state of knowledge, you will probably never know how long you had had LCIS.  There's a lot of uncertainty about the natural history of LCIS.  But LCIS is not the 'end of the world'. No, I'm not trying to downplay the anxiety, but you are probably not going to die of breast cancer in the next 5 years.  Life involves uncertainties.  Its important that every person make their own decision:  its a very personal one.  No one should tell anyone else what to do. I would only encourage people to do their research and check with both their heart and their head.  Goodness, its been a very long road for me to get from my LCIS diagnosis in 2005 to now.

Perhaps this is some holiday reassurance about LCIS:  invasive breast cancer found after a diagnosis of LCIS is probably caught at an earlier point than those in the general population. (Most LCIS patients are followed more closely than women in the general population.) Perhaps the most long term data (up to about 25 years) with the most patients- at least  that I know of -  is the Chuba et al study (2005). http://university.asco.org/sites/university.asco.org/files/ClassicReferences_Breast_EpidemiologyBiology_1..pdf

This paper found in their study of patients followed by SEER [The SEER Program,18 which was initiated in 1973, collects cancer-related data for 11 (formerly nine) geo- graphic registries representing 14% of the US population.]

that when LCIS women got a subsequent invasive breast cancer, it was usually found at an earlier stage.

Patients with a primary tumor size of less than 1 cm represented 21.4% of primary IBC {in this paper IBC stands for invasive breast cancer, not inflammatory breast cancer} patients compared with 42.9% of patients with IBC detected after LCIS. Simi- larly, extent of disease with respect to lymph node positivity was greater in patients with primary IBC compared with patients with IBC after LCIS. Patients with negative lymph nodes made up 52.8% of primary IBC patients compared with 59.7% of patients with IBC after LCIS. Correspondingly, smaller proportions of patients with IBC after LCIS had either one to three or more than three positive lymph nodes. Approximately 20% of patients in each group had either no lymph node dissection or no information col- lected regarding lymph node dissection.

This study also found mastectomy did provide a more protection against breast cancer than a partial mastectomy, but it was not complete.  However, the numbers may be closer than I would have guessed.  Perhaps I'm reading it wrong?

Most patients (n =3,141; 68%) had partial mastectomy with or without axillary lymph node dissection. One thousand two hundred eighty-one patients (28%) had mastectomy (including total mastectomy, modified radical mastectomy, or radical mastectomy). ...Rates of IBC [invasive breast cancer] occurrence for patients with partial mastectomy were greater than with mastectomy, and the magnitude of this difference remained constant over time. At 10 years, the incidence rates were 8.8% for partial mastectomy compared with 5.7% for mastectomy (ratio, 1.5); at 15 and 20 years, the rates were 12.6% v 9.5% and 16.7% v 11.0%, respectively (ratio, 1.5; Table 5).

So, to repeat, in this study, at 20 years, the rates of invasive breast cancer for LCIS patients was 16.6% for partial mastectomy, and 11% for total/modified radical/radical mastectomy.  Perhaps I am not reading this carefully enough- perhaps the mastectomy group included those with a single mastectomy?? Note the absolute numbers at 25 years are very small.

In the discussion section, it says these numbers are the minimum, and gives caveats about the study. 

--------

Incidence

Its hard to determine LCIS incidence because we only know the cases that have been diagnosed.  We don't know how many women have LCIS and don't know it.  Because you can't usually see LCIS in a mammogram, you usually don't find out if you have LCIS until you have a breast biopsy.

This paper found 2.5 LCIS cases/100 breast biopsies at one hospital. http://onlinelibrary.wiley.com/doi/10.1002/1097-0142%28197301%2931:1%3C105::AID-CNCR2820310114%3E3.0.CO;2-K/abstract

This study www.ncbi.nlm.nih.gov/pubmed/12... (2002) looked at the incidence of known LCIS.  (Since PLCIS was only recognized in the 1990s or so, PLCIS may or may not be included in some of these numbers, because different pathologists will classify/diagnose cases differently.) The incidence overall has been increasing in the last few decades.

Overall, LCIS incidence rates increased fourfold... over the study period. Specifically, they rose from 0.90/100,000 person-years in 1978-80 to 2.83/100,000 person-years in 1987-89, but then increased only modestly up to 1996-98 where the incidence rate was 3.19/100,000 person-years. However, among women 50-79 years of age, LCIS incidence rates increased continuously over the study's duration. In 1996-98, 50-59 year-olds had the highest incidence rate (11.47/100,000 person-years) and experienced the greatest absolute increase in incidence over the study period (9.48/100,000 person-years). LCIS incidence rates have steadily increased from 1978 to 1998 only among postmenopausal women.

I know some people absolutely hate it when I quote studies. For me, it gives me some sort of boundary to my anxiety. We're all different and have different personalities, so what is helpful to me is not helpful to some others.

Holiday greetings to all.

If you're going through hell, keep going-Winston Churchill

Dx 12/8/2005, LCIS, Stage 0, ER+/PR-Hormonal Therapy 07/15/2006 Tamoxifen
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Dec 26, 2012 02:01AM auntiems3 wrote:

Hi rosyFL-  Hope you had a happy holiday.

In response to your post,  I wanted to say that yes, you, or anyone, who has a DX of LCIS has a lot of research to do.  In these times of health care, we all need to be aware of the fact that we are in charge of our bodies and that we need to know which types of questions to ask in the face of our medical care.

I am responding not only as an LCIS patient, but as a health care professional (13 years experience as a Radiologic Technologist who performed mammograms, but also as an MS in Biology, and a college instructor of pathophysiology and Anatomy and Physiology professor at Penn State -Lehigh Valley and Moravian College, Bethehem, PA. ).

LCIS is an insidious character of a part of science which we do not have a world of knowledge.  There are few researchers in the field who have delved into this particular area.  From a personal standpoint I have read many articles which focus on LCIS.  They are few and far between and their results are not conclusive.

I can only say from experience that I have personally come to the conclusion (from my own standpoint) that PBMX is my only option to safeguard my future, as a MOM ( of 3 and stepmom to 2) and a wife and a grandmother (55 years old, DX at 49). 

Your future lies in your own hands......ask the questions you need to and the answers will come.

Sincerely, Marie 

Dx 6/2007, LCIS, Stage 0, 0/0 nodesDx 4/8/2013, LCIS, 0/3 nodesSurgery 05/10/2008 Lumpectomy (Left)Surgery 05/17/2010 Lumpectomy (Left)Surgery 05/15/2013 Prophylactic Mastectomy (Both); Reconstruction: Tissue expander placement (Both)
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Dec 26, 2012 03:50PM, edited Dec 27, 2012 05:54AM by leaf

If you want to do your own research (which I agree is a very good idea - the more knowledge the better) - if you are into scientific/medical journals a good place is Pubmed http://www.ncbi.nlm.nih.gov/pubmed?db=PubMed

Pubmed is one of the largest, if not the largest source of medical/scientific journals.  Most of the articles cited are peer reviewed or refereed, but the peer review criteria and reviewer / referee qualifications may vary from journal to journal. www.nlm.nih.gov/services/peerr... .  Search terms are important, and will really affect the results you get.

It is very desirable to get information from quality peer reviewed/referred publications.   For example, some people still feel that breast cancer is caused by wearing bras, or using antiperspirant or deodorant, including some of my relatives who were well educated (in non-scientific fields.)  Beware of the sites you explore - one relative sent me this thing about antiperspirant causing breast cancer that was supposedly from an Ivy-league medical school.  (Of course it was a fake.)  No reputable scientist/doctor that I know of holds these views.

If you're going through hell, keep going-Winston Churchill

Dx 12/8/2005, LCIS, Stage 0, ER+/PR-Hormonal Therapy 07/15/2006 Tamoxifen
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Jan 1, 2013 09:29PM cdehls wrote:

I too have been recently diagnosed with lcis following a biopsy due to microcalcifications.  I'm 52 with a strong family history, mother deceased from bc and a first cousin died of bc at age 54.   I started tamoxifen about a month ago and am trying to get the courage to proceed with the surgery...I'm not there yet, and I just don't know that I ever will be, but if you look at the stats, it seems the right way to go.  Great breast surgeon, but as you said, there is no clear cut path here...

Dx 6/13/2012, LCIS
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Jan 2, 2013 02:58PM leaf wrote:

Welcome to the forum, cdehls!  Its quite the way you say - there is no clear path, and it can take some time to decide which path is the right one for you.  Fortunately, unlike our sisters who have invasive breast cancer, there is no huge rush to make a decision what to do.  Take all the time you need to make the right decision for you. Some people know right away which path is the best for them, and others take a long time to decide. Everyone has unique situations and reasons why their choice is best for them.  I'm not happy I need to make these choices, but thank goodness most of us have some choices.

If you're going through hell, keep going-Winston Churchill

Dx 12/8/2005, LCIS, Stage 0, ER+/PR-Hormonal Therapy 07/15/2006 Tamoxifen
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Jan 3, 2013 12:41PM ED2012 wrote:

Hello Ladies,

I have my first six month f/u since being dx coming up in mid February and I need to ask a question from those of you who have been dealing with this longer than I have.  This visit will include a breast MRI and a clinical breast exam performed by my breast specialist. 

I have read (I believe it was the American Cancer Society) that if breast MRIs are performed - they should be done at a center that is equipped to perform biopsies of any suspicious findings in the MRI suite as those sites might not be found later at a separate biopsy procedure.  My dilema is that the hospital that my breast surgeon practices at does do the breast MRIs - but is NOT equipped to perform biopsies in the MRI suite.  In the interest of doing what is best for my health - do I travel away from my home (and my breast specialist) to find a center that does meet the criteria?  I have discussed this previously with my BS...and he has a lot of confidence in the radiology staff at the hospital, I don't want to overthink this and be one of "those" patients...but I do feel that I have personal responsibility to ensure I make the best choice.  I do like my BS and he has been very patient with all of my questions - but I would really appreciate any experience or advice that you ladies would be willing to share.

Thanks

LCIS(& ADH/ALH) 8/14/12; Tamoxifen 9/24/12

Dx 9/19/2012, LCIS, Stage 0Hormonal Therapy 09/24/2012 Tamoxifen
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Jan 3, 2013 01:45PM OG56 wrote:

Hi Ed2012, I have had many MRI's over the last 5 years and some have led to a MRI biopsy but never at the time of the initial MRI, even though they were equipped to do MRI biopsies, it was always at a later date. Hope this helps!

(5-09 Bilateral Pleomorphic LCIS)

Dx 5/30/2008, IDC, <1cm, Stage Ia, Grade 1, 0/1 nodes, ER+/PR-, HER2-
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Jan 3, 2013 06:50PM awb wrote:

If something is found on breast MRI, they generally do not do an immediate biopsy (there may be exceptions to this, of course), but reschedule for another time. It usually takes 3 to 5 days to get results anyway, then you get another appt for the MRI biopsy. It is probably a good idea to have your MRIs done at a center that is capable of doing MRI guided biopsies for consistency and carry-over. (I think that's what the ACS  meant, not that they had to be done at the same appt (which I think is quite unusual). I guess you have to decide which is more important to you, your established relationship with your breast specialist or the breast center's capabilities. I have been very fortunate and have not needed any biopsies in the almost 9.5 years since my LCIS diagnosis (and my risk is further elevated by mom's ILC); but I'm glad to know my breast center can do MRI biopsies if necessary.

Anne

"I don't know what the future holds, but I know who holds the future"

Dx 9/5/2003, LCIS, Stage 0, 0/0 nodesSurgery 09/16/2003 Lumpectomy (Right)Hormonal Therapy 10/30/2003 TamoxifenSurgery 04/05/2005 Prophylactic Ovary Removal (Both)Hormonal Therapy 02/28/2009 Evista
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Jan 5, 2013 06:37PM Oropi524 wrote:

I finally made the choice to have a MAST (left) in November.I had LCIS DX October '12 but my MIR did not detect 2 more lumps!  I first had lumpdectomy in October and the surgeon removed what he had to but under the microscope they found 2 more!  So its a no brainer for me- off with the boob!  I have small breasts and the implant was put straight in as I'm also insulin dependent diabetic, so higher infection rate.  It will be slighly expanded in January with about 10-20 saline for shape only. Also on tamoxafin for 5 years.

Dx 9/22/2012, LCIS, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR-, HER2-Dx 10/15/2012, LCIS, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR-, HER2-Surgery 10/10/2012 Lumpectomy (Left)Surgery 11/21/2012 Mastectomy (Left); Reconstruction: Breast implants (permanent) (Left)
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Jan 5, 2013 10:01PM carol57 wrote:

I have had time to read the Chuba study that Leaf excerpts from above, but my own interpretation on reading it is that the risk of IBC after mastectomy following an LCIS finding is very low: less than 1% through twenty five years post surgery.  Leaf and I have exchanged PMs about this, and we both agree that it would be helpful if I share my interpretation of the study.

The excerpt Leaf posted said that:

Most patients (n =3,141; 68%) had partial mastectomy with or without axillary lymph node dissection. One thousand two hundred eighty-one patients (28%) had mastectomy (including total mastectomy, modified radical mastectomy, or radical mastectomy). ...Rates of IBC [invasive breast cancer] occurrence for patients with partial mastectomy were greater than with mastectomy, and the magnitude of this difference remained constant over time. At 10 years, the incidence rates were 8.8% for partial mastectomy compared with 5.7% for mastectomy (ratio, 1.5); at 15 and 20 years, the rates were 12.6% v 9.5% and 16.7% v 11.0%, respectively (ratio, 1.5; Table 5).

However, that high incidence percentage after mastectomy includes contralateral incidence after unilateral mx.  If you look at page 5537 of the report, in the text just underneath Table 4, it says: '...this intervention [referring to mx] was associated with dramatic (although not complete) reduction in the rate of ipsilateral occurences of IBC, with less than 0.5% to 1.0% ipsilateral IBC 15 to 20 years after mastectomy (P< .001). '   Then, if you check Table 6 on the next page, the risk of IBC after mx is divided into contralateral and ipsilateral risk.  The contralateral risks are, as Leaf pointed out in her post, not trivial, especially as the years go by.  But the ipsilateral incidence of IBC is less than 1% even 25 years out.

My interpretation of those study discussions/exhibits is that if you have a bmx after an LCIS finding, by definition it's the ipsilateral incidence percentages that are most applicable to your risk assessment.  In other words, the study found that the risk of getting IBC in the same breast (the ipsilateral breast) where the patient had a mastectomy is less than 1% over 25 years.  The IBC risk in the contralateral (other) breast (obviously for someone who had a unilateral mx) is 11%.  So, for those of us who have bilateral mx, when there is nothing more sinister at the time of surgery than LCIS, this particular study places us in that 1% category.

It's a well written study (thank you, Leaf!) and the full article is available from the link Leaf posted; not just the abstract, if you want to read it yourself.

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Jan 6, 2013 06:29AM leaf wrote:

I so appreciate other people carefully reading articles and finding out things I miss or misinterpreted! My goal is to get some sort of picture out there how much and how little we understand.  Thank you so very,very much, Carol!!

If you're going through hell, keep going-Winston Churchill

Dx 12/8/2005, LCIS, Stage 0, ER+/PR-Hormonal Therapy 07/15/2006 Tamoxifen
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Jan 7, 2013 11:00AM ED2012 wrote:

OG56 and awb - thanks for the response and advice regarding the MRI, it so helps to hear from ladies who have been walking the walk! Its also good to know that if they do find something - that it isn't necessarily biopsied on the same day...funny how I assumed that just b/c they recommended a site that could perform MRI guided biopsies :). 

LCIS(& ADH/ALH) 8/14/12; Tamoxifen 9/24/12

Dx 9/19/2012, LCIS, Stage 0Hormonal Therapy 09/24/2012 Tamoxifen
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Jan 28, 2013 09:20PM NYCMs wrote:

Hello,

I've just graduated to this area after an excisional biopsy found LCIS, after a needle biopsy found ALH.  My bs said this is NOT breast cancer, NO stage and looking at the report there is no BIRADS score.  I do have family history, extremely dense breasts, no children and beginning research on what to do.....

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Jan 28, 2013 11:32PM Runnergirl1970 wrote:

I was diagnosed with DCIS and LCIS in July 2012.  After a HUGE amount of thought I decided on a Lumpectomy and radiation and I'm very happy with the decision.  I finished radiation January 18th-it was pretty easy and I've just begun taking Tamoxifin.  So far I'm doing fine on the med.  I will have a MRI next month to continue the follow up.  I guess this is what life post BC will be like.  I am 42 years old and worry about how Tamoxifin with affect my body.  I'm just so thankful that I already have my 2 children. 

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Jan 29, 2013 12:33PM ED2012 wrote:

NYCMs,

I'm sorry to hear about your "upgraded" status and can definitely relate.  Went through a similar situation in August/Sept last year.  Had a lumpectomy and started tamoxifen, exercise and whole foods right after.  So far, the SEs with the Tamoxifen have been manageable, have lost about 30# (BMI finally ideal) and am going next week for my first 6 month f/u with Breast MRI since the dx.  Has been a HUGE mindset shift and must admit that I am a bit stressed and nervous about what they might find on the upcoming f/u.  There is still much research to be done on LCIS - if you scroll back through these chats you will find quite a few reliable articles that can help you understand your dx and options.  The lumpectomy (or more precisely wide excisional biopsy) went well for me and the breast surgeon did a phenomenal job of "hiding" the suture line along the outer areola.  I just wanted anything close to cancer out!  I will close by saying that it is quite interesting to read the different takes on LCIS - if you are attempting to obtain insurance of any kind - they most assuredly DO consider LCIS a type of non-invasive cancer and several reliable studies have shown that LCIS is genetically linked to some subsequent invasive breast cancers.  The varying arguments will persist until enough research is done to prove something definitive.  In the meantime- for me- I decided to err on the side of caution.  If they find additional areas of concern - will probably move to the next step of considering bilateral mastectomy.

LCIS(& ADH/ALH) 8/14/12; Tamoxifen 9/24/12

Dx 9/19/2012, LCIS, Stage 0Hormonal Therapy 09/24/2012 Tamoxifen
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Jan 31, 2013 02:42PM arc12 wrote:

ED2012,

Hi. So sorry to bother you. I have been searching this post since December but have yet to ask a question. When I saw your response to NCYM's, I thought it might be ok to ask an additonal question?

I turned 46 end of Nov/ and 1st of Dec doctor found lump, hard, didn't hurt, shape of lemon seed. mammogram showed nothing, ultrasound showed something, core biopsy showed ALH, breast surgeon reorder HIS pathologist to review core biopsy slides, upgraded to LCIS. ok, so here's my question. I had a lump and a core needle biopsy showing LCIS. But I had it all done at a different location that my breast surgeon. Now, my breast surgeon, who i do trust, is recommending an excisional biopsy. WHY OH WHY? do I have to keep having biopsies? can they not just monitor me or is it because of the lump found originally? Or because his office wasn't the one to do my original biopsy. They keep saying, this is not cancer, then why another larger biopsy? Why doesn't he recommend watching it? My Risk are as follows: invasive melanoma with no lymph node involvement, less than 3 yrs ago; mother's sister (aunt) died of breast cancer at my age; never had children;dense breast (but also very very tiny....lol)

I don't have alot of money, I'm single. I keep thinking, "take a vacation" and don't spend your money on another biopsy that will likely have the same result as the first biopsy? Your thoughts?

Oh and ladies, God bless you all. Your courageous, amazing, beautiful people. I admire you!

Thanks for everything!

Angie

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Jan 31, 2013 03:25PM MelissaDallas wrote:

Hi, Angie. I think you should have a discussion with your surgeon so that you understand better what he is looking for, but generally, when ALH or LCIS is found they do an excisional biopsy to make sure there is no invasive disease or other condition "hiding" in the area where the little core samples were taken. They can then feel confident in how you need to be followed. It does seem that there should be a better way, doesn't it? Sometimes the surgeon will order an MRI to get a better look also. Lobular cancer is notoriously "sneaky" in that it tends to grow in sheets or tendrils instead of as a discrete mass And is notoriously difficult to spot with mammograms or ultrasounds. LCIS also increases the odds of having ductal disease.

I'm really sorry you are facing this and we all know how tremendously anxiety-provoking it is.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.

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