Just diagnosed with LCIS

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.   http://nccn.com/patient-guidelines.html  (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. http://www.ncbi.nlm.nih.gov/pubmed/19213563 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. http://jnci.oxfordjournals.org/content/98/23/1673.long

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. jco.ascopubs.org/content/23/24/5534.full.pdf  

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)    jco.ascopubs.org/content/23/24/5534.full.pdf   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) http://www.ncbi.nlm.nih.gov/pubmed/17206485  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.

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.

http://www.cancer.gov/cancertopics/pdq/treatment/breast/healthprofessional/page5

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.

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. http://www.uspreventiveservicestaskforce.org/uspstf05/brcagen/brcagenrs.htm#clinical 

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 http://community.breastcancer.org/forum/95/topic/702563?page=1

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.

Crescent: I've only seen studies that include PLCIS in the wider group of LCIS. http://surgpathcriteria.stanford.edu/breast/lcis/printable.html

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.

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... www.arleneflick.blogspot.com  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. 

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!  

Thank you leaf....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!!!!

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

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

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.

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.

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.

Anne 

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.  http://www.uspreventiveservicestaskforce.org/uspstf05/brcagen/brcagenrs.htm#clinical

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.