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Topic: Just diagnosed with LCIS

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

Posted on: Apr 17, 2011 12:31AM

iammommy wrote:

Hi all. Upon hearing, NO, it is NOT cancer, I was thrilled. But now, the reality of the diagnosis has set in. It seems like for the rest of my life (I am 57) I will be having MANY US,MRIs, Mammos, doc visits, Maybe Tamox. etc. WOW! I"m not the calm type who can just take the wait and see attitude, even with close follow up. I am a nervous Nelly with a true anxiety disroder.

 So, I am curious about Tamox. I hear it's taken for 5 years. Do you start it ASAP after LCIS diagnosis (if you choose to go that route, of course), and how long does the "protection" last for? Is it more effective for me, a 57 year old in terms of lifetime risk than it would be for a 35 year old takingTamox. for LCIS? Would 5 years of Tamox. last a lifetime for a young woman in her 30s.

Also, if you DO have close follow up with MRIs etc, and cancer IS found, is it usually stage 1, or can you get Stage 4 cancer even if you've been diligent about being monitored? Can Stage 4 cancer just suddenly appear between 3-6 month exams, scans, etc.?

I find this diagnosis VERY confusing, I'm still trying to wrap my brain around this all. I tend to worry and analyze, worry and analyze.

Oh, something else, LOL Does reducing ths other risks that "normal" Tongue out women have like obesity, sedentary life, high cholesterol lower the risk of cancer in LCIS women as well? Or is it only a drug like Tamox that can lower our risk. I know, of course, I should lower the risks for other kinds of health issues but I'm wondering specifically about breast cancer in this case.

How many of you got a second opinion on the pathology slides and diagnosis? Did you all get a second opinion as to the treatment plan?

If you've read this far, thanks! My head is just spinning with questions, and worries. Thanks for listening!


Diagnosed 4/13/11 with LCIS; PBMX 5/4/11
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Apr 17, 2011 08:23AM - edited Apr 17, 2011 09:06AM by leaf

I have an anxiety disorder too.  For now, I have chosen tamoxifen, and will be finishing up my 5 years this fall.  I have yearly mammograms and twice-a-year clinical exams. (My core biopsy showing LCIS and nothing worse was in Dec 2005.)   This is all that is recommended by NCCN.  (click on patient guidelines on the left side, LCIS is listed on page 9.)  I am not trying to imply I am 100% happy with my followup, but it does follow the NCCN guidelines.

I had a 2nd opinion on my pathology report (which turned out the same), and a 2nd opinion at an NCI-certified major institution. I was not very happy with them.  I wanted to know more about my risk.  I was told my lifetime risk was 'somewhere between 10% and 60% lifetime risk, but probably closer to 10%. If you want more information, you'll have to go to journals.'  I did, and had a lesson on how little we know about breast cancer risk prediction.  In 2007, they said they offer LCIS women yearly mammograms, twice-a-year clinical exams, and offer tamoxifen.  This follows the NCCN guidelines.

There is little about LCIS that is NOT controversial.  Part of the problem is that LCIS (and nothing worse) is uncommon.

There is no huge rush to begin tamoxifen (if that is what you choose to do) after an LCIS diagnosis.  The average incidence of invasive breast cancer in the LCIS (and nothing worse) population is about 0.5-1% per year (assuming you do not have anything worse lurking.)  They try to reduce the incidence of 'something worse lurking' by doing an excision of the area if you were diagnosed with LCIS and nothing worse by a core biopsy (as opposed to an excision.)  Roughly, 20% of women who were found to have LCIS and nothing worse on a core biopsy get 'something worse' after excision.  They are not doing the excision to remove the LCIS, but to see if there is something worse lurking in the area.

It took me about 3 months to get my initial appointment with an oncologist.

I know of no studies that look at the lifetime impact of tamoxifen on LCIS women.  Tamoxifen was first routinely offered after the results of the NSABP P-1 and STAR studies.  (The STAR study recruited women 1999 - 2004.)  Only about 10% of the STAR study participants were LCIS women. The STAR study compared tamoxifen and raloxifen use, and found they both cut the risk of  future invasive breast cancers by about 1/2.   There were 4 deaths from breast cancer in the tamoxifen group and 2 deaths from breast cancer in the raloxifen group. Note that about 70% of the STAR study participants had a first degree relative with invasive breast cancer, thus were at higher risk for BRCA, which carries up to about a 90% lifetime incidence of breast cancer.

The state of breast cancer prediction FOR INDIVIDUALS (even from the general population, not LCIS patients) is in its infancy.  We know reasonably well how many women in a group may get breast cancer, but we have a VERY POOR idea which of these women will get breast cancer.    If the state of the art is this bad for the general population, you can imagine what it is for the unusual LCIS women.

Yes, it is possible to get advanced breast cancer after having LCIS and nothing worse. Many things are possible.  In this 2000 website they cite that 2 out of 214 women with BRCA who opted for prophylactic mastectomies (these women are at much higher risk of breast cancer than the 'garden variety' LCIS woman) died.  

But in the Chuba et al study, LCIS women had less advanced diagnoses than women from the general populaton.  (See figure 1, p. 5538 bottom)   About 1.5% of LCIS women compared to about 5% of women from the general population had tumors >5cm in size.  (They don't specify stage though.) Note these women were LCIS women that were diagnosed between 1973-1998, thus did NOT have tamoxifen, and probably much poorer mammograms, ultrasounds, and probably no MRIs.

In the much smaller Port et all  2007 study (more recent)  they had no LCIS or ALH patients that were diagnosed with over stage II.

I know of no studies that specifically look at LCIS women and the effect of diet, exercise, etc.  Presumably, diet and exercise are good for breast cancer risk and your general health, but I know of no studies that actually look at this.

Tamoxifen is normally given for 5 years, then stopped (except in the advanced breast cancer/metastatic situation).  I know of no studies that look at the lifetime effect of tamoxifen on LCIS (and nothing worse.)  At least one of the reasons why they normally stop at 5 years is from the increased incidence of uterine cancer after 5 years.

It is hard to judge which of the usual treatment options you wish to follow:

Treatment Option Overview

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. The use of tamoxifen has decreased the risk of developing breast cancer in women with LCIS and should be considered in the routine management of these women.[2] The NSABP-P-1 trial of 13,388 high-risk women comparing tamoxifen to placebo demonstrated an overall 49% decrease in invasive breast cancer, with a mean follow-up of 47.7 months.[2] Risk was reduced by 56% in the subset of 826 women with a history of LCIS, and the average annual hazard rate for invasive cancer fell from 12.99 per 1,000 women to 5.69 per 1,000 women. In women older than 50 years, this benefit was accompanied by an annual incidence of 1 to 2 per 1,000 women of endometrial cancer and thrombotic events. (Refer to the PDQ summary on Breast Cancer Prevention for more information.)

Bilateral prophylactic mastectomy is sometimes considered an alternative approach for women at high risk for breast cancer. Many breast surgeons, however, now consider this to be an overly aggressive approach. Axillary lymph node dissection is not necessary in the management of LCIS.

Treatment Options for Patients With LCIS
  1. Observation after diagnostic biopsy.
  2. Tamoxifen to decrease the incidence of subsequent breast cancers.
  3. Breast cancer prevention trials, including the National Cancer Institute of Canada's trial (CAN-NCIC-MAP3 [NCT00083174]), for example.
  4. Bilateral prophylactic total mastectomy, without axillary node dissection.

You may or may not agree with the NCI or many breast surgeons. (My breast surgeon refused to do prophylactic mastectomies on me.  I have a weak family history and classic LCIS. You're not going to get a mastectomy if you don't have a surgeon who is willing to do them.)

I am NOT advocating one treatment choice or another.  That is an EXTREMELY personal and individual choice.

There is no huge rush to decide, assuming you have nothing worse than LCIS.

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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Apr 17, 2011 09:07AM iammommy wrote:

Thanks for all the info, leaf! It's a bit confusing, isn't it?  my mother did have breast cancer in her 70s. Ihad a hysterectomy in sept so no uterus/ovaries/cervix to worry about. This is such a weird condition. Not that I wish cancer, but at least you know what it is.since I have an anxiety disorder I am scared I will ruin my life with constant worry about impending breast cancer. I've got a wonderful 12 year old I homeschool. He has mild autism and I need to be here for him. I need to be the loving, attentive mommy he needs, not the worrying, crying mommy I am right now. Thanks for listening, sorry to complain. Nan

Diagnosed 4/13/11 with LCIS; PBMX 5/4/11
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Apr 17, 2011 09:13AM iammommy wrote:

Hi leaf. Another question? How do I know if I have "something worse" than just LCIS? I had stereotactic biopsy and the conclusion was LCIS. What else might the pathology report say that would indicate something worse? Thanks! Nan

Diagnosed 4/13/11 with LCIS; PBMX 5/4/11
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Apr 17, 2011 03:50PM awb wrote:

Nan---I was diagnosed with LCIS over 7.5 years ago, following stereotactic core biopsy due to suspicious microcalcifications on mammo.  I then had a wide excisional lumpectomy  to make sure there was nothing more serious going on in there along with the LCIS. Have they recommended you have an excisional biopsy? It's pretty common to further investigate the area if LCIS is diagnosed. (a larger area of tissue is removed for examination than with the steroetactic core biopsy).  Something "more serious" could be either DCIS, IDC, or ILC. (be alert for the words "invasive" or "infiltrating"); but you have a much greater chance of finding nothing more serious (70 to 85%) than finding something more serious (15 to 30%), so hang onto those numbers!!! They're huge! I noticed you mentioned mom's history of bc and aunt's history of ovarian cancer. You may want to also consider genetic testing to help you with any future decisions. I also have family history of bc (mom had ILC) which increases our risk even further. I do high risk surveillance of alternating mammos and MRIs every 6 months with breast exams on the opposite 6 months, took tamoxifen for 5 years, and now have taken evista the last 2 years for further preventative measures. Please feel free to PM me if you'd like. I'd encourage you to ask your breast surgeon about an excisional biopsy to rule out anything more serious--praying you get good results soon.


"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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Apr 17, 2011 05:59PM - edited Apr 17, 2011 05:59PM by leaf

Anne is totally right. 

Do consider genetic testing.  It may make a difference in how you choose to treat your LCIS.

Here are the USPTF guidelines for BRCA testing.

Certain specific family history patterns are associated with an increased risk for deleterious mutations in the BRCA1 or BRCA2 gene. Both maternal and paternal family histories are important. For non-Ashkenazi Jewish women, these patterns include 2 first-degree relatives with breast cancer, 1 of whom received the diagnosis at age 50 years or younger; a combination of 3 or more first- or second-degree relatives with breast cancer regardless of age at diagnosis; a combination of both breast and ovarian cancer among first- and second-degree relatives; a first-degree relative with bilateral breast cancer; a combination of 2 or more first- or second-degree relatives with ovarian cancer regardless of age at diagnosis; a first- or second-degree relative with both breast and ovarian cancer at any age; and a history of breast cancer in a male relative.

For women of Ashkenazi Jewish heritage, an increased-risk family history includes any first-degree relative (or 2 second-degree relatives on the same side of the family) with breast or ovarian cancer.

About 2 percent of adult women in the general population have an increased-risk family history as defined here. Women with none of these family history patterns have a low probability of having a deleterious mutation in BRCA1 or BRCA2 genes. www.uspreventiveservicestaskfo... 

BRCA testing can cost roughly $2-5K so do check if your insurance will pay with your family history before you have testing done.  I had genetic counseling but not testing - they found my family history pattern was relatively weak, so I opted not to get genetically tested since I would have to pay out of pocket.

Anne is totally right about the excision too - most breast surgeons do want LCIS people who haven't had an excision to have one (though there is controversy about this too).  There is a thread about LCIS and excision from 2008

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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Apr 18, 2011 07:31PM rehm046 wrote:

Nan,  I was dx.ed with LCIS 6 years ago.  I have a steriotactic biopsy followed by removal of the surronding tissue.  They found more LCIS, but my BS decided on the "high surveillance" approach.  Every six months I saw him; alternating 6 month MRI's and mammo's with ultrasounds.  One more spot that turned out to be calcifications.  And the constant comment of 'you have very dense breasts".  About 2 months ago, I found a lump-immediatly called him and he found two more.  We had a plan:  mammo w/ ultrasound, followed by MRI,  followed by discussion of what next. I had the mammo and ultrasound; the 3 spots we had found seemed to be fine, but the radiologist found another spot.  The next thing I knew, a needle biopsy was ordered (before the MRI and without any conversation with the BS)...Exit old BS, enter new one. You cannot change a plan midstream without talking to me.

  New BS saw me, reviewed all my risk factors and said very clearly I was at high risk.  We could continue with the close surveillence that my previous BS (who she knew) had done.  I immediately asked her about a prophylactic mastectomy.  I had tried to ask my previous BS but he would refuse to talk about it saying "let's just take one step at a time".  I have to admit, I really liked him and trusted him, so I went along with it.But, when I asked her about it, she said I was a great candidate and she thought it was something I should consider-no need to rush into anything, but another choice.  I went and saw a plastic surgeon last week because I am interested in reconstrucion.  2 hours later I walked out with my head spinning.  But also a HUGE sense of relief-no more waiting for the other shoe to drop. Oh and my calculated risk factor is 37% chance of developing some form of BC in the next 5 years-I'm 52.

  This is a very personal decision.  I've had friends who have disagreed with my decision; my mother totally supports it-her mother died of BC at my age (but remember, only mother, daughter and sister "count" in family history); EVERY women I have talked with (and I've alot of friends who have had breast cancer say "have it now"-that way, with any luck, you can avoid chemo and radiation.

Again, I'm 6 years into multiple appointments, needle biopsies, MRI's-none of which bother me in and of themselves, but the 2-3 weeks each time when I'm waiting for the results are a loss of time for me.  I would have never said it 6 yeaers ago-although there were some who suggested it-but I'm ready now.  BPMX for me.

And by the way, my first BS-didn't "believe" in PBMX.  I want all the choices I have put on the table so that I can choose.  It's my body.  I get to make the choice.   Pat

Pat Dx 6/18/2011, DCIS, Stage I, Grade 1, 0/0 nodes
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Apr 19, 2011 06:05PM Crescent5 wrote:

Leaf, I have a question for you. When you cite information on LCIS, you always clarify "and nothing worse." I appreciate that. But I'm always wondering, do I have something worse? I have PLCIS. I mean I know it's worse, but does it count as worse when you're citing studies?

Iammommy, I have anxiety disorder and an 11 year old. I had a very hard time looking in his eyes during the testing months. I was scared to death that I was going to leave him. So I understand your feelings. My first BS was not terribly nice. She used my anxiety as a way to put me down, and I did not appreciate that. My second opinion (and now current) BS is perfect for me. She tells it like it is, but she's also very respectful that I freak out. I asked a similar question about follow up appts finding massive cancer. She said it does not grow that fast (clearly there are some exceptions, but that's what she said, and I'm sticking to it). I've been mammo'd every year even though I have dense breasts. I've been MRI'd last fall. I've been ultra-sounded twice since 9/10. I've been surgically biopsied. If there was a big, honking tumor in there, someone would have seen it. Maybe there are exceptions, but I'm sticking with what I know. When I have my mammo next week, and if they spot something, it's not likely to be massive. Statistically speaking, it's not likely they'll find anything. It's possible, but not likely. That doesn't take away the raw fear, and it doesn't take away reality. But as any anxious person will admit, there's reality, and there's an element of irrationality. We have to discern what's reality.

While going through testing (Lord knows it takes so dang long, we certainly have time to think), I made myself exercise my nerves. If I could get through that crap, I can get through it again. Not that I want to by any means, but I certainly learned how to compartmentalize my fears, and I learned just how much strength I had lurking beneath all my worrying.

For 5 months, I got to live carefree knowing that I did not have cancer. Now I worry all over again, but that's what monitoring is like. I don't know if I can go through this for the rest of my life. I don't know if I can go through PBM either. All I can say is that you absolutely have to have a good relationship with your primary breast dr. Even then, go ahead and get second opinions. Research, think, get scared and rationalize. But also make sure you take plenty of time to not think about cancer.

We are not dx'd and then left on our own. We will be monitored. We will have choices. We have each other. As one dear friend said to me when I was dx'd, breast cancer research is very well funded. I doubt a cure's going to be found any time soon, but diagnosistics will get better. Treatment will get better. Reconstruction will get better.

While I'm babbling, I don't know if this helps, but this is what I have to do for me. I allow myself times to freak out. But there are times I refuse to think about this crap. When I get into bed at night, cancer has no place in my mind. There are certain friends I never told about this stuff. Gosh I love being around them now. It's nice not to be the girl with a breast full of pre-cancers sometimes.

So my advice is to allow yourself your freak out moments. But also allow yourself plenty of mental vacations.

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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Apr 19, 2011 06:41PM iammommy wrote:

Thanks, Crescent. You have a great attitude! I admire that. In the next week I am having a baseline breast MRI, having a follow up with my BS (stereotactic biopsy done last week), getting a second opinion from a highly respected breast surgeon in our area, and having a consult with an oncologist. My BS said the same thing...that I am not going to wake up one morning with meta. breast cancer. That all the very close monitoring will prevent a HUGE growth in any cancer. I'm calling on her words in my worst moments. I need to trust her or I will go absolutely insane. I am very anxious to see what the other BS and oncologist say. I am gonig to ask for genetic testing becasue of my mother's cancer, and my other risk factors. But at least I am at times burned out from thinking cancer all the time, and have brief moments of other thoughts now. Thanks for your words of wisdom! It is VERY appreciated right now.


Diagnosed 4/13/11 with LCIS; PBMX 5/4/11
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Apr 19, 2011 07:22PM leaf wrote:

Crescent: I've only seen studies that include PLCIS in the wider group of LCIS.

The 'something worse' is DCIS or invasive (normally IDC or ILC.)  I'm sure its possible for LCIS women to go on to get something more unusual like mucinous invasive carcinoma or inflammatory breast cancer.  But I don't remember anyone posting here saying that's what they had.

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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Apr 22, 2011 09:27AM Doreenanne wrote:

iammommy: I found out the end of sept 10 after having a breast reduction that I had ALH.  I was so overwhelmed did know what it was. here i went for a reduction never thinking about the pathology report coming back with something, but it did ALH. Anyway BS said I had to go to an oncologist, have to take tamoxifen or have ovaries taken out.  When you here all these things your heads starts spinning.  I walked out of there hysterical.  It was horrible. I was sick to my stomach. I went to the oncologist, who I knew from a friend. He suggested tamoxifen and close monitoring.alternating mri and mamo every six months. Keep in mind I am a WORRIER.  When I had to take that first tamoxifen pill it really bothered me because I know there are a lot of side effects.  So now the end of dec.10  I went to an mri and guess what, there were 2 spots that had to be biopsed.  Came back LCIS. which is a step up from ALH. Well I was finished after that. I was so drained and exhausted from worrying. BS suggested PBM. Went for second opinion, BS suggested PBM.  BS said I had a 35% chance of getting breast cancer in the future. Well thats just too high for me.  I have EXTREMELY DENSE BREASTS , so between the density, alh and lcis that a lot. Who knows if i ever got cancer if they would see it in the beginining stages. Believe me its scary to think about having your breast removed, but you know what, I have a wonderful husband and two wonderful children who need me and I want to be here for them for a very very long time. So on 4/18/11 I had my PBM, I didnt know what to expect, but I can honestly tell you its not that bad. I dont even have that much pain, maybe just the 1st couple of days. I wish you luck in whatever you decided to do. If you want to PM and give me your number, I will be happy to talk to you. I have peace of mind now and theres nothing like it.

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Apr 22, 2011 10:05AM iammommy wrote:

Doreenanne... I am SO glad things worked out for you! I, to, am a constant worrier so I understand how you felt. I am sure I want to do the mastectomy, simple, no reconstruction, but I want to do it the right way, as my surgeon suggested. I honestly don't think I can live the rest of my life, in a happy and peaceful manner, with LCIS hanging over my head. Sure, I know other stuff might crop up unrelated to breast cancer, but at least I can greatly eliminate one risk! Did you have reconstruction? How long were you in the hospital? Thanks for posting to me. I can only imagine how you felt finding out so unexpectedly.


Diagnosed 4/13/11 with LCIS; PBMX 5/4/11
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Apr 22, 2011 11:45AM - edited Apr 22, 2011 11:49AM by Doreenanne

iammommy:  I went into the hospital monday 4/18/11, the surgery was at 11:00 over by 2:30. I was released wednesday 4/20/11 at 12:00.  I have to tell these past 7 months were very difficult for me trying to figure out what to do.  But after 2 doctors suggesting PBM, I knew I had to do it. I'm 43 and I have a lot of living to do.  LIke you said other things can crop up unrelated to breast cancer, but I know the risk I have with breast cancer, so why not get rid of it.  It's once less thing to worry about. and believe me I know I would worry about every date and I would not be living.  I know this is not the right thing to do for everyone, but for me it was.  I actually got a call from the BS a little while ago and the pathology report came back and not only did I have LCIS in the left breast which we knew about, but it was also found in the right breast.  I was not suprised. It is said that is is usually in mutliple areas of both breasts. Thats why is you decide on pbm you should have both breasts removed.  I finally feel like I can breath again.  These have been the longest seven months of my life.  I wish you all the best. Believe me I know how you feel. Yes I am having reconstruction, TE and silcone tamoxifen

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May 5, 2011 02:36PM ArleneMarie wrote:

Hello Iammommy,

I was diagnose dwith LCIS in August 2010 and the question that I always asked of all the doctors was, "What percentage would you say I am at risk of developing breat cancer based on all my factors ( mom had breast cacner at 49 and died at 56, I had my period at 11, no kids, LCIS diagnosis and dense/cystic breasts).  Once that question was asked, the responses were anywhere from 50%-80% based on each doctor's opinion.  Personally, that was too high a risk for me and I dread the thought of chemo, tamoxifin or any other drugs in my body.  Therefore, the correct choice for me was a BPMX.  I wrote a blog if you wanted to read about the process from decision to mastectomy to reconstruction...  Yes, everyone's decision is extremely personal.  I just wanted to give you an insight into what you would go through if you chose the preventative mastectomy route.  I am extremely pleased with my decision...but, remember, that is me.  Sealed

Dx 8/2010, LCIS Surgery 12/13/2010 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/10/2011 Reconstruction (left); Reconstruction (right)
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May 5, 2011 02:52PM beacon800 wrote:

Arlenemarie, you and I are twin cases!  I got dx in July 2009 w LCIS and PLCIS (an even more abnormal type of LCIS).  My mom presented with advanced breast cancer age 54, died age 59.  I have no kids, dense, cystic and proliferative breasts.  It took me a very short time to conclude that the BMX was the way to go.  I sucked up my fear, did it, and am really happy I did.  Maybe tamox would have worked, maybe it wouldn't happen, maybe I would have been caught early, maybe, maybe, maybe......

I couldn't take that level of anxiety.  So I did like you and it's all ok now. 

LCIS, PLCIS. Dx 7/24/2009, LCIS, Stage 0, 0/0 nodes, ER+/PR+, HER2-
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May 11, 2011 08:34PM ---faithhopelove--- wrote:

Hi Ladies,  I am new to this diagnosis too.  I had a mamo with calcifications and then a stereotactic core biopsy that came back LCIS then I had surgery to remove the area.  I have a breast surgeon who will monitor me.  Mamography/MMR rotating every six months.  I am seeing my oncologist next week and even have an appointment with Sloan Kettering in August as a candidate for their Special Surveillance Breast Program.  I am trying to stay optimistic.  I wish everybody well.  I am also new to discussion boards!  

Dx LCIS Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 12, 2011 12:15PM leaf wrote:

Welcome, faithhopelove!  I was also diagnosed via mammo calcifications.  It sounds like you are checking out all of your options, which is a very good thing.  There's no huge  rush to come to a decision what to do - not like our sisters who have invasive.

  I have found the women here have been so helpful to me.  I knew I would never find a sample of women who had LCIS (and nothing worse) except through a discussion board - its too unusual. 

Holding out my hand in friendship.

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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May 12, 2011 04:15PM ---faithhopelove--- wrote:

Thank you seem to know a lot.  Thanks for the very helpful posts.  It is strange how rare this is and that is why I came to the discussion boards.  I had my mamo in January and then biopsy in Feb and then late March was my surgery and next week I see my Oncologist.  Since I leave near the city I will go into Sloan in August to see what they say.  I am 46 with no family history so Breast Surgeon thinks I could wait before starting Tamoxfin.  I will be monitored with mamo and mri every six months.  I asked breast surgeon what I could do on my own and she said eat lots of berries and a low animal fat diet.  Exercise like walking is the best.  I'm actually hanging in there.  I guess I'll hear my treatment plan after speaking with Oncologist.  Wishing everybody well!!!!

Dx LCIS Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 12, 2011 06:54PM Annabella58 wrote:

I just need to interject something in here...."invasive" is not "worse"....and there is no rush with it, either.  It all depends on what your oncotype is and the aggressive nature of the cancer...there is many the case of DCIS that has turned invasive after many years.  There are non aggressive invasive cancers that never make it to the nodes (I'm one).

I was told after diagnosis of invasive that it is merely the type of cancer.  It is not "rushing thru your body, proliferating"...that's a myth.  IF one has an aggressive form, that is in the nodes, then that is a rush situation and even then it depends on the stage of it.

I had fully 3+ months before they felt they needed to take it out.  So, please, be informed before you frighten all those diagnosed with invasive unecessarily. 

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May 13, 2011 04:32AM - edited May 13, 2011 04:33AM by leaf

Thank you for your very wise information, anniealso.  I'm sorry for my mistake, and I'll try to do better in the future.

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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Jun 2, 2011 03:02PM suzanne3017 wrote:

Hi:  I too am 57 years young.  I was dianogised last April 2010 with LCIS, placed on taxmoxifen.  During the past 12 months on put on weight, and not one day did I not thing about getting breast cancer.  6 month mamos the whole bit.   LCIS is not cancer, it is a warning sign.  1 out of 5 of getting invasive breast cancer, so for  I opted to have to bilateral mastecomty.  I am 7 weeks post op tomorrow.  No reconstruction.  I feel free.   Recovery for me was relatively easy.  They did find another area in the same breast that the pathology came back LCIS.  Have been back at work for 4-1/2 weeks.  Feeling great.  Make sure you get informed, discuss with medical and you make whatever decision you feel is best for you. 

Dx 4/7/2010, LCIS, 1cm, Stage 0, ER+/PR+
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Nov 13, 2011 09:46PM ---faithhopelove--- wrote:

Started tamoxifen and am having bad hip pain.  Does this last long?

Dx LCIS Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 14, 2011 01:47AM leaf wrote:

I didn't have any hip pain (that I could relate to tamoxifen anyways.)  Different people do differ. 

There are many reasons why people can have hip pain.   This is a list of the side effects reported in various studies at an incidence >=2-5%.  Note that musculoskeletal pain was listed, but look at the various groups carefully.  For example, the metastatic cancer group had a significant incidence of bone pain, but in some cases that could be from cancer metastasis.  It is HIGHLY UNLIKELY that you have undetected metastatic cancer.

Its good to get things checked out though.  When I had hip pain (pre-LCIS), I went to the doc to get ruled out.  Everyone is different, but for me, I found out that stretching really helped.  (I found a position where I could stretch the painful area.)  I am NOT suggesting that you have the same problem that I had.

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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Feb 10, 2012 02:16PM MARTHA9 wrote:

diagnosed with lcis following reduction surgery in july, mother breast cancer survivor had radical masectomy right side in 1993 followed with chemo radiation and 7 years tamoxaphen. Her older sister also diagnosed with breast cancer reoccurred and she died after spread to brain, first cousin mom's side breast cancer died but all details unkown, my older sister 2 surgeries to remove ductal tissue abnormal on tamoxaphen like drug(starts with r but she is postmeno., mom had genetic test does not carry gene I am leaning towards surgery with reconstructionIbecause I am very afraid that I will get breast cancer Please help I am starting to freak out ! I am 50 probably perimeno.

Dx LCIS, Stage 0, 0/0 nodes
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Feb 11, 2012 05:25AM Crescent5 wrote:

Hi Martha {{{hugs}}}

Take come deep breaths. Go ahead. I'll wait. =)

OK, I was just dx'd with early stage BC, so I have a little perspective here. I was in the BS's (breast surgeon) office a few days ago, and my heart was breaking seeing the scared women in the waiting room. Come to think of it, they probably felt the same way about me. It hit me in that moment, Not many years ago, a BC dx (diagnosis) would mean end of life. Now, you actually hear the word "curable." Tremendous strides are being made, and well ... women just don't go down without a damn good fight. So you're going to breathe, try to relax, and you're going to gather information. Right now, you have time. You do not have invasive cancer. You have a marker.

Get yourself a damn good dr who understands LCIS, and discuss this with her/him. I trust you've considered BRCA testing with your family history?

I opted for the surgery. Did you know there's a mastectomy where you can keep your skin and sometimes your nipples? It's been 4 weeks, and it turned out to be the right thing for me. It's not an easy route and it's not perfect, but for some of us, it's the right choice. Others do really well with close monitoring.The thing is, there are options out there for you. Of course you're scared. It's that damn C in LCIS. No one wants to hear that word. But it's out there now, and it's a wake up call, Gather information and decide what's best for 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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Feb 21, 2012 06:34PM mistie wrote:

Hi..I'm new to this forum but I'm looking for advice. I went in for a breast reduction last month and my pathology report came back abnormal. After meeting with a breast surgeon today, it was determined I have LCIS. Due to my family history of cancer, the doctor I saw recommended a bilateral mastectomy. I have a strong family history of cancer with my mother having DCIS and choosing to do a bilateral mastectomy at age 43. My paternal grandmother died of breast cancer. However, I'm only 30 years old and unsure of what to do. Do I take the radical approach or wait?  Any thoughts or advice would be much appreciated. Thanks.

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Feb 21, 2012 06:43PM leaf wrote:

As long as there has been an excision of the area (to help make sure there is nothing worse in the area) there is ABSOLUTELY NO RUSH in making a decision what to do.

You may want to consider genetic testing (which may take several weeks/months) before you make your decision.  Genetic testing is normally done at a major institution, and its generally recommended that you use a board-certified genetics counselor.  The genetics counselor should not  be pressing you for or against testing, but they should be giving you more information.  I ended up having a weak family history (with a paternal grandmother and several maternal aunts, all postmenopausal).

There is no right decision for everyone.  It is a very personal decision. 

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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Feb 21, 2012 07:59PM awb wrote:

As Leaf said, there is no rush with LCIS.  I was diagnosed with LCIS over 8.5 years ago and my risk is further elevated by my mom's history of invasive bc (ILC). I do high risk surveillance (alternating mammos and MRIs every 6 months, breast exams on the opposite 6 months) and take preventative meds. (took tamoxifen for 5 years and now have been on evista for 3 years). Due to your family history and your young age, I would recommend you go for genetic testing---it could really help with future decisions; and see an oncologist to go over all your risks and benefits and options. The decision on which path to take-----monitoring, meds, or BPMs is very personal and individual--it has to be the right one for you and ultimately only you can make that decision. Please PM me if you 'd like to talk.


"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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Apr 12, 2012 09:05PM Caraobwh5 wrote:

I have been just diagnosed with lcis..... I am 41... I have a 1 year old.... 6 yr old and 9 yr old.... I have not met with my breast surgeon yet and I have no idea what to expect.....

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Apr 14, 2012 02:19PM - edited Apr 14, 2012 02:28PM by leaf

They will do a breast exam, and they will ask about any possible family history of breast or ovarian cancer.  They are asking about family history not because many cases of breast cancer are caused by a familial genetic mutation (the most common being BRCA), but because if you are BRCA positive, then you are probably at higher risk from your BRCA status than from your LCIS.  Here are the PTSF guidelines for BRCA testing.

There can be family lineages where these guidelines may not apply.  These include situations such as only sons in a generation, or a single child in a generation.  

Overall, single genetic inherited genes account for about 15%of breast cancer cases.  About 70%of women who get breast cancer have no obvious risk factors (except being a woman.)  

It is possible to have a strong family history, such as multiple sisters, aunts on the same side of the family, etc having breast or ovarian cancer, and yet test NEGATIVE for BRCA.  There are undoubtedly unknown single familial gene mutations that can cause breast cancer. 

In most cases breast surgeons will either recommend an excision (to make sure there isn't something worse in the area, such as DCIS or invasive breast cancer - this happens in about 20% of patients), or prophylactic bilateral mastectomies, particularly if you have a strong family history.  My breast surgeon, even before she knew my (weak) family history, said she was 'not interested in doing any further surgery on me' (other than my excision.)

Overall, if you are like the general pool of LCIS patients, the majority women with LCIS and nothing else will NEVER  go on to get breast cancer.  We don't have good statistics about LCIS in particular, but, overall, in the general population, most women who DO get breast cancer end up dying of something ELSE.

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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Apr 15, 2012 02:46PM msippiqueen wrote:

Everyone who has invasive Lobular cancer started out with LCIS. Your LCIS may not do this.

Additionally, it is a "marker" for an increased likelihood of other breast cancers in either breast. So you may have LCIS that signals trouble, but the odds are it wont signal anything.

LCIS will be nothing worth worrying about for some women. Current thinking has it, most women with LCIS will never develop DCIS or ILC.

The amazing benefit of early diagnosis is women can choose aggressive monitoring so as to catch the LCIS that flips into ILC, or the early onset DCIS. Even though the odds have it your LCIS may not ever be a problem.

Some women walk away with a diagnosis of LCIS and never have a follow up exam because they know that most times testing will not reveal invasive cancer or more in situ cancer.

More women submit to monitoring because they realize their chances of invasive disease in either breast has elevated. The odds are all of the testing and medication are for naught. This plan is pushed most often, because if you are in the minority group that develops advanced disease, you are more likely to catch it early but then, have a whole new set of worries and concerns.

Other women choose preventative bilateral mastectomies to take the chance of invasive cancer to near zero and get away from aggressive monitoring. Some of us don't like the idea of catching DCIS or ILC early, we don't want it at all, we like those near zero odds. We don't like testing. We don't want medication.

Early detection has been talked up for a whole generation of women, and with LCIS, you have it. The question is what level of risk are you willing to take? What potentially is at stake? When and how do you want to intervene? How does your action or inaction impact your quality of life? You must consider all of this and realize that LCIS is a mystery, it may be a harbinger of more than is currently known, either for more or less harm.

Support a woman's right to choose...mastectomy. Dx 4/28/2010, LCIS, <1cm, Stage 0

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