My 2nd opinion at Major University

leaf

I have mixed feelings. (My breast history in a nutshell : LCIS with nothing worse since 12-05 core biopsy, excision confirming 1-06, with weak family history of breast cancer, on tamoxifen since 7-06, 2 benign biopsies (consistent with scar tissue) 2-07. The radiologist stated my breasts mammos are 'dense', but not 'very dense'.)

I was first seen by a nurse practitioner (I think I knew more about LCIS than she did. She said she was formerly a nurse practitioner with my current GP!!), then by a breast surgeon.

1) They did NOT reread my slides; that may occur in the next several weeks.

2) They said they use the Gail model for LCIS patients. (Of course the Gail model on the NCI website specifically says this model is NOT valid with LCIS. http://www.cancer.gov/bcrisktool/ ) So apparently they treat LCIS as ALH. They said my lifetime risk for breast cancer was between 8-60% (8% being that for an average American woman.) If they had to quote a number, they said between 10-20%. (If you stick my numbers in the NCI website calculator, and consider LCIS as ALH, you get 22%.) If they got any more accurate, they'd have to pull out papers. (Of course some of the more current papers say about 1%/yr. Since I am 54, if I lived until 75, this would be about 20%. This does not include factors such as dense, but not very dense breasts.

3) For LCIS women, they do yearly mammos, and twice yearly clinical exams, and that's it. MRIs are discussed, tamoxifen is discussed. The surgeon did NOT recommend MRIs for me because I had so much scar tissue it would just yield false positives. (Currently, with my local care, I seem to be having mammos and ultrasounds every 6 months.)

4) The surgeon did NOT recommend PBMs for me, however, both the NP and surgeon said it was not unreasonable (ie out of the question). The surgeon would NOT bar the way to OR for me, as it seemed my current breast surgeon (who said 'she was not interested in any further surgery for me.')

5) For LCIS women that opt for tamoxifen, they have a breast surgeon recommend this, not a medical oncologist.

No, I did not get the names of experts. By that time I had been up for 20 hrs straight.

At least the surgeon was open to BPMs.

I am very confused about their breast cancer risk numbers. (I had printed out Dr. Hall's calculator.) In 3-06, with my genetics counseling (I was NOT tested), the genetics counselor, without breast density info, gave me a number of 40%.)

Monitoring make me crazy, and so does not monitoring.

If you have LCIS and nothing worse, and have a weak family history, what kind of numbers were you quoted for your lifetime risk (without SERMs)?

roseg

I think a risk of 10-20%, closer to 20 passes what my boss calls the "giggle test." For women with DCIS the risk of more DCIS is about that - .05% per year.

Although LCIS isn't the same it sort of falls into the same semi-cancer category, so similar risks would make sense.

leaf

I think most papers quote about 1%/yr for LCIS, and unlike invasive cancers, it sounds like the rate does not decrease with time.

Based on the findings of this study, 10 years after an LCIS diagnosis, about 7% of women will be diagnosed with invasive breast cancer. http://www.breastcancer.org/research_genetics_111005.html
and in this paper about 1.2%/yr http://www.ncbi.nlm.nih.gov/sites/entrez...Pubmed_RVDocSum

I was really disappointed to hear from the nurse practitioner they were using the Gail model for LCIS, since the website specifically excludes that. But maybe the NP was under pressure and not thinking.

The surgeon emphasized it was somewhere between 8 and 60% and it would be very hard to put a number on my risk since I could die of something else. I have no clue why she quoted a value (8%) that would put me at NO increased risk. But, I'm sure she didn't have time to actually put my numbers even into the Gail model, which gives me a 22% risk (if I had ALH only.)

I am glad both were not dismissive of the idea of prophylactic mastectomies for me, though neither recommended it.

Every patient has different feelings about what treatment is best for them, and that is what it should be.

Comments welcome.

amythol

Leaf,
I am a little disappointed that your slides were not read. I have been watching for your post, curious to know. My oncologist quoted (for me) a risk of about 45%.She factored in my start of menses,age at the time of first pregnancy, length of time on birth control and age of LCIS diagnosis. She did not tell me the name of a scale she was using when she gave me the 45% risk. (I have LCIS, ALH, weak family history, and have had two benign masses.)

My surgical oncologist, plastic surgeon, breast surgeon, oncologist, and even my radiologist told me if they were me, they would have PBMs. Mine is scheduled for Monday, July 23. Every second of every day I question my decision, however, I am determined to go ahead with surgery. As I have said before, my decision has a lot to do with my children who all have significant medical issues.
I think of you often Leaf,
Amy H

Beesie

Leaf, I've seen risk numbers for LCIS ranging from as low as 2.4X base risk (base risk being around 5%) to as high as 7-10X base risk. So this is a range of 12% to 50%. That doesn't help much! However most sites I've seen that quote a specific risk percentage for LCIS put the number in the range of 25%-30% (5X-6X base risk). For example: http://cancer.stanford.edu/breastcancer/lcis.html

Interestingly, it's actually the same BC.org article that you mention that puts the LCIS risk rate at only 2.4X base risk. While this article does say that 7.1% of LCIS women in the study got BC over the next 10 years, what you have to remember is that this is an average for all age groups - and the rate of BC goes up for everyone as we age. To really draw a conclusion from the BC.org article, my thought is that you have to compare the LCIS risk to the average risk for all women, age group by age group. Here are the averages: http://www.cdc.gov/cancer/breast/statistics/age.htm

On average, 1.4 out of 100 women in their 40s will get BC in the next 10 years. For LCIS women, the number is 4.7 - - 3.4X higher. For women in their 50s, on average 2.6 out of 100 will get BC in the next 10 years. For LCIS women, the number is 7.5 - - 2.9X higher. Women in their 60s have a 3.7% chance of getting BC in the next 10 years. For LCIS women, the risk is 10.4% - - 2.8X higher. And for women who are 70, the 10-year BC risk is 4.0%, whereas for LCIS women aged 70 & above, the risk is 13.9% - - 3.5X higher. So for you, since you are in your 50s, it suggests that your lifetime risk, over the years of your 50s, 60s and beyond, is about 3.4X the risk of an average women. The average lifetime risk of getting BC is 12.5% ( http://www.natlbcc.org/bin/index.asp?strid=427&depid=9&btnid=2 ); by age 54, approx. 3% of the risk has already passed, so the remaining risk is 9.5%, putting your remaining lifetime risk (to age 90) at 32.3%.

Looking at your other link to the NCBI paper, I think you also have to be careful here in drawing conclusions. The 7.3% (ipsilateral) and 5.2% (contralateral) numbers are not additive, and here again they are an average of all age groups over a specific period of time. I'm not sure how to quantify the risks from this article, but I wouldn't conclude that the LCIS risk is 1.2% per year, every year for the rest of your life. Maybe by using the risk rate that Rose mentioned, which is what I've been told as well, we can come up with an estimate. DCIS patients are generally told that they have a 0.5% annual risk of getting BC again (ipsilateral or contralateral, DCIS or invasive). Comparing the LCIS numbers to the DCIS numbers in this article, it looks like the LCIS risk is about 1.3X times higher than the DCIS risk. So that would put your annual risk at 0.65%. Since you are 54, your lifetime risk (to age 90) would be 23.4%.

So, 32.3% or 23.4%? Given your lack of other risk factors - weak family history, breasts that are a bit dense but not severely so - I'd lean more to the lower number, which by coincidence, is closer to what you were told by your 2nd opinion experts (who, granted, didn't seem too thorough). Or maybe settle on 25%-30%, which seems to be an average of where everything is coming out?

Anonymous

Leaf---I was diagnosed with LCIS and have family history (that I think they consider to be moderate) and the oncologist came out with a number for me of 36.6% lifetime, 4.6% over next 5 years. He did use the Gail model, but stated that it was just an ESTIMATE as it wasn't really designed for LCIS, but there was no other better method for calculating my risk at the time (almost 4 years ago now). He also said that there are many factors that can increase or decrease one's overall risk (as Amy mentioned---age of periods and menopause, age at childbearing, breastfeeding, use of HRT/ birth control, smoking, obesity, drinking, etc.. some of the factors being stronger indicators than others); so that everyone's risk has to be calculated individually. In all the research I've seen, the risk is 7x to 10x for LCIS (and 3.5x to 5x for ADH/ALH) which when figured in with the lowest base rate of 5% to 6% would come out with a low of 35% to a high of 60% (if I did the math right!). Whatever the risk truly is, suffice it to say it's very high, but not quite as high as quoted for BRCA (40% to 80%). While we don't have the "bad bc"--invasive--requiring chemo or rads, we have our own set of special challenges and issues living with high risk that doesn't decrease over time.

leaf

Thank you all so very, very much. I know I have a lot to think about.

I know I have more to learn about statistics. Thank you Bessie for your links.

Thank you so much once again for sharing your knowledge and experience and family histories. I will post more later.

moogie

Leaf:
Sounds like your visit wasn't what you had hoped for, and I empathize with that!!! Clarity on this issue is difficult to find. One thing you might want to consider is to send your info to SLoan Ketterring or Duke's High RIsk Breast Center. It doesn't appear anyone has suggested " random periareolar fine needle aspiration" studies as an option to you, and as they would give you more information about the activity in your breasts......perhaps this would be of interest. If you are on tamoxifen, changes may be noted through this method. Only a few centers have studies in this and i think they are done once or twice a year.

Hoping you get good info soon that will help!
Moogie

veggievet

Hi Leaf,
I'm sorry if I missed this in the discussion, but how old were you when you were diagnosed with LCIS? For me that is a relevant part of the discussion.
Warmest regards,
Sue

leaf

I was 52 (premenopausal) when diagnosed with LCIS on core biopsy 12-05 after a routine mammo 10-05 showing 'suspicious calcs'. In the ensuing 13 months, I had 2 biopsies in 1-07 (both negative, one for calcs, the other for my abnormal ultrasound which had been potentially mislabeled as scar tissue on the 4-06 and 7-06 ultrasounds. I started on tamoxifen 7-06. I never want to go through the experience I had in 1-07 in having a biopsy for an abnormality which was totally obvious but had been potentially mislabeled. This oversight was not caught on my 4-06 and 7-06 ultrasounds.) I simply cannot fathom how women with breast cancer must cope when they are diagnosed with late stage breast cancer that could have been caught much earlier.

I went to this same major university for genetic counseling 3-06, 2 months after my LCIS diagnosis. They seemed to do a meticulous job, because they said I was at low risk for BRCA (I knew this) and low risk for Cowden's. I had never heard of Cowden's (PTEN, Hamartoma syndrome). I fulfilled the number of required lesions for Cowden's (if you count LCIS as either breast cancer or fibrocystic disease). I am at low risk for Cowden's though because the word 'hamartoma' has never been mentioned in any of my path reports, and because there have only been a total of about 200 people ever diagnosed internationally with Cowden's. I specifically asked the pathologist to comment on my 1-07 biopsy if (s)he saw hamartomous component(s), and (s)he did not. The genetics counselor took my case to her board who decided it was not 'medically necessary' for me to be tested for Cowden's. I knew that the chances of me having both LCIS (and nothing worse) (approx 1:10,000 women-years) and Cowden's ( about 200 people internationally ever) would be astronomical. Almost all Cowden's patients have their benign and malignant growths before their 40s, and I was 52 when diagnosed with LCIS. I opted at that point to NOT be tested for Cowden's.

This board certified genetics counselor at this same major university in 3-06 said my lifetime risk for breast cancer was about 40%.

I obviously have a lot of thinking to do. I won't be able to post all of the references I would like to right now because I am scheduled for neck surgery (prophylactic Roto rooter job on my spine for decompression, 2 level fusion and plate) next Monday, July 23. Its an overnight stay.

Even though when LCIS women do get cancer, most of the cancers are ductal, LCIS women are at increased risk of the 'sneaky' ILC. (I'm sure you know this, Sue.) I do not know how they expect annual mammos and biannual clinical exams to pick up ILCs well. http://www.ncbi.nlm.nih.gov/sites/entrez? http://www.ncbi.nlm.nih.gov/sites/entrez..._RVAbstractPlus


I do not understand their recommendation for no MRIs. Even if they do not want to look at my L breast (where all the troubles have been), my R breast, which has never had biopsy or surgery, is at risk also. In this group of women, the risk of breast cancer in LCIS women was http://www.ncbi.nlm.nih.gov/sites/entrez...Pubmed_RVDocSum

I am tenatively reaching the conclusion that the people at the UCSF high risk clinic were not familiar with journal papers regarding my risk, or did not have the time to consider my risk. I perhaps did not clearly enough communicate to them the major reason for consulting them was to ascertain my risk as I am strongly considering PBMs. The surgeon did say that in some cases LCIS may be a precursor for ILC. Even the Gail model calculates risk to age 90, and if you say my risk is 1%/yr that would give my risk 36%.


Thank you so much, particularly moogie and AmyH.
If I can't post too much in the next couple of weeks, I hope people understand due to my upcoming surgery. I so appreciate your comments.

Thank you again.

leaf

I just got a call from them about my slide reread. They only got 3 out of 11 slides, but they do read them as LCIS + ALH. My original said LCIS + features of ALH.

Eventually I will call to request the path reports.

karcan

Quote:

---

Hi Leaf,
I'm sorry if I missed this in the discussion, but how old were you when you were diagnosed with LCIS? For me that is a relevant part of the discussion.
Warmest regards,

Sue

---

Sue, can you tell me why age is relevant when you are diagnosed with LCIS? I was 43 when diagnosed with LCIS.

Thanks!

Anonymous

Sue---I was also wondering what was the importance of age when diagnosed with LCIS. I was 46.

leaf

I had a conversation with my regular Gyn about this Major University consult. She did NOT put herself up as an expert on LCIS.

She said an elementary school friend of hers opted for BPMs, and she (her school friend) was very happy with her decision, as they found tiny amounts of cancer. I do not know what put her school friend at high risk. (I presume it was BRCA as that is so much more common than LCIS.)

This friend also got a consult at this same major university, and also got some 'off/inconsistent' answers, in other words her school friend was also not very pleased with this Major University.

She advised I talk to my onc about people who are doing research in this field, and perhaps do some traveling. She guessed that it would be like I am guessing-that no one really knows, and that when a physician supports a certain course of action that it is their own personal preference only.

I did find one of the basice references for the American Cancer Society Guidelines for MRI.

"Lobular carcinoma in situ (LCIS) and atypical lobular hyperplasia (ALH), together described as lobular neoplasia, are associated with substantially increased risk of subsequent breast cancer, with lifetime risk estimates ranging from 10% to 20%.45 This equates to a continuous risk of about 0.5% to 1.0% per year. The invasive cancers may be ipsilateral or contralateral, are usually invasive lobular cancers, and more than 50% of these diagnoses occur more than 15 years after the original diagnosis of LCIS. Similar findings have been reported by Fisher et al,46 describing a 12-year update of 180 women with LCIS who were treated with local excision alone and followed by the National Surgical Adjuvant Breast Project (NSABP), as well as Li et al, who described the risk of invasive breast cancer among 4,490 LCIS patients using Surveillance, Epidemiology, and End Results (SEER) data between 1988 to 2001.47" http://caonline.amcancersoc.org/cgi/content/full/57/2/75

Perhaps this is where the major university is getting the "10-20%", but I do not understand how it is consistent with the next sentence of 0.5-1%/yr, because the average age at which LCIS is diagnosed is approximately in ones' 50s, surely not in one's 70s or 80s, and I don't know of any risk models that say a woman's lifespan is 60, or even 70. The Gail model calculates lifetime risk to age 90.

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). http://www.ncbi.nlm.nih.gov/sites/entrez..._RVAbstractPlus

This is a direct quote from the ACS table (link below)


Recommend Annual MRI Screening (Based on Evidence*)
BRCA mutation
First-degree relative of BRCA carrier, but untested
Lifetime risk 20–25% or greater, as defined by BRCAPRO or other models that are largely dependent on family history
Recommend Annual MRI Screening (Based on Expert Consensus Opinion)
Radiation to chest between age 10 and 30 years
Li-Fraumeni syndrome and first-degree relatives
Cowden and Bannayan-Riley-Ruvalcaba syndromes and first-degree relatives
Insufficient Evidence to Recommend for or Against MRI Screening
Lifetime risk 15–20%, as defined by BRCAPRO or other models that are largely dependent on family history
Lobular carcinoma in situ (LCIS) or atypical lobular hyperplasia (ALH)
Atypical ductal hyperplasia (ADH)
Heterogeneously or extremely dense breast on mammography
Women with a personal history of breast cancer, including ductal carcinoma in situ (DCIS)
Recommend Against MRI Screening (Based on Expert Consensus Opinion)
Women at <15% lifetime risk

http://caonline.amcancersoc.org/cgi/content/full/57/2/75

I am obviously not understanding something about statistics and/or this abstract.

My gyn said, which I think is correct, is that the place of MRI in these situations needs to be established.

I think it is rather illogical for screening to be solely determined by the anxiety of a patient. For me, getting the results is anxiety provoking, but so is not getting screened. I'm sure most high risk women would agree.

As stated before, if I stick my numbers into the NCI website Gail model, assuming I do NOT have LCIS, but DO have atypia, I get 22.7% (to age 90) lifetime risk. http://www.cancer.gov/bcrisktool/

I will be having a conversation with my onc in Nov. (after my biannual mammo and us in Sept.)

moogie

Dr Carol fabian at the university of kansas is doing research using Random Periareolar Fine Needle Aspiration coupled with MRI as a screening program for high risk . Translational and primary researchers will have the most cutting edge approach to LCIS, as they are the ones who will eventually be establishing the protocols for treatment in the future.
Moogie

leaf

Once again, I am indebted to you, moogie. I will research this....

leaf

Update:
A. Rereading of my slides at Major University

I chose to have 3 sets of slides reread at a Major University: a) my 1-06 excision showing ‘LCIS with pagetoid spread into ducts, features of ALH’, b) my 2-07 mammo biopsy (benign), and c) my 2-07 ultrasound biopsy (benign).

I received my slide reread, “Lobular carcinoma in situ and atypical lobular hyperplasia with pagetoid spread to ducts, radial scar, etc.” and the others benign. So this, if relevant, changes my diagnosis to LCIS + ALH. There was *much* less detail than the original report. No further info about grade or anything that might be helpful in the future, such as perhaps grade of cells, etc. The institutions at which I had these biopsies/excisions send the Major University a grand total of 4 slides.

There were at least 16 sections (not slides, but sections) just for my excision (which showed LCIS.)

The bill for rereading the 4 slides total, (which is not covered by insurance) was $1680, or over $550/biopsy.

So if persons choose to have their slides reread, they may want to be sure that a) an adequate sample of slides was sent by your original institution and b) you are prepared for the bill.
______

B. Trying to fathom where this Major University got their '10-20% best guess' for my risk of bc from LCIS (range 8-60%):

I have also reread the MRI report which describes the recommendations by the American Cancer Society about who should receive breast MRIs.
http://caonline.amcancersoc.org/cgi/content/full/57/2/75.

In one section it reads:
“Lobular carcinoma in situ (LCIS) and atypical lobular hyperplasia (ALH), together described as lobular neoplasia, are associated with substantially increased risk of subsequent breast cancer, with lifetime risk estimates ranging from 10% to 20%.45 This equates to a continuous risk of about 0.5% to 1.0% per year.” Since most LCIS is diagnosed aged 40-50, and is NOT usually lead to a lethal outcome, I assume they are a) assuming that any other risk factors besides LCIS are not additive, except if you have a family history of bc, b) this was a typo, and/or c) they are not thinking. I simply do not understand.

and in another place in the same paper (pg. 13)"While lifetime risk of breast cancer for women diagnosed with LCIS may exceed 20%, the risk of invasive breast cancer is continuous and only moderate for risk in the 12 years following local excision.46 Only one MRI screening study has included a select group of women with LCIS,61 which showed a small benefit over mammography alone in detecting cancer. This benefit was not seen in patients with atypical hyperplasia. MRI use should be decided on a case-by-case basis, based on factors such as age, family history, characteristics of the biopsy sample, breast density, and patient preference."

Maybe this is what happens when you have a committee, but I find it confusing at best.

_____

C. Sue asked when I was diagnosed.
Of course, the Port study (cited in the ACS article above) http://www.ncbi.nlm.nih.gov/sites/entrez...Pubmed_RVDocSum found MRIs detected cancers mostly/all in younger patients (I do not know how they defined young in this study),

This 1977 study found no relationship to age http://www.ncbi.nlm.nih.gov/sites/entrez...Pubmed_RVDocSum

I think I found one paper that opined that the age at diagnosis for ADH (or ALH) may influence prognosis, but I can't find the reference now. I can't find any such journal article for LCIS. Perhaps I am not using the correct search terms, or Sue has access to information that I don't have.

moogie

I understand your concern and frustration.
Having gone through this uncertain process for many years, I can recommend that a truly comprehensive appointment with a high risk program doctor ( not nurse, not practitioner) really will be the best thing for you. If you consider travel at all, Duke's High Risk Breast Center is a very good place to get an evaluation.
Since Lcis is a controversial entity, you must be prepared for the likelihood that the risk assessments that you will receive from multiple sources may have a big range.
The most important thing is to find a place of resolution for oneself about the issue, so it does not impact on the quality of your present healthy life. An experienced doctor who deals regularly with patients actively trying to incorporate a sense of " high risk"into their lives, will be of enormous help to you.
One thing I asked myself , is " what do the numbers mean to me?" For instance, If I were told I had a 50% risk....what would I be willing to do? Or a 65%? or an 85%? I really journalled on this exercise, and it helped me find a place of peace in the process for several years....and it ultimately helped me make my decision for surgery 13 years later.
Best to you!
Moogie

Cheryl54

Hello all. I am a patient of Dr. Fabian's at KU, and had years of fine needle aspiration. The results of that testing (which showed progressively worrisome changes in my breasts) led to my decision to get a bpm. I had extensive family history, late child bearing (in my 30s) and repeat findings over a four year period of atypical hyperplasia. My post-bpm path report showed multi-focal LCIS along with extensive ALH/ADH and other worrisome features (ie., sclerosing adenosis). My lifetime risk was estimated at 10x that of the typical woman.

I am so relieved I got my bpm and have been thrilled with the outcome. I feel (and look) terrific -- a wonderful plastic surgeon has created new breasts that, on casual view, are nearly identical to the original ones. The small losses and inconvenience associated with the surgeries pale in comparison to the huge benefit.

I haven't had a moment of regret. I am not suggesting, however, that this is the solution for everyone in my situation. It's a very individual decision. I watched my mom die from bc, and the emotions of that situation were the foundation for my decision to go forward.

No more worry, no looking back. This was the right thing for me. After 27 years, I am no longer "high risk." What a relief.

Best wishes to all as each searches for her individual answer.

leaf

Moogie and Cheryl54, you don't know how much your support means to me.
I am so grateful for telling me places you have gone that seem to have good docs.

I will post more later. I just want you to know how much I appreciate you.

leaf

Well, if I had a brain, I might be dangerous. I did not follow links. This is the info from the Port paper.

To summarize:
Clearly, in this study, LCIS women had a higher incidence of bc than AH patients. 11 out of 14 of the cancers were found in LCIS patients. (Note there were more LCIS patients than AH patients.) Two of the 14 women had a known first degree relative with bc. In one additional patient, the family history was unknown. The remaining 11 patients did NOT have a first degree relative with bc.

To me, this data does *NOT* strongly support the idea that family history confers a much higher risk versus a negative family history overall (MRI screened + non-MRI screened.) 2/14=14.2%, which is approximately the incidence of breast cancer in patients with a 'bad' family history.

To summarize, there were a total of 14 patients (out of 126 AH patients + 252 LCIS patients) in which breast cancer was discovered in this 6 year time span at Sloan-Kettering.

There were 7 non-MRI screened patients in whom they found breast cancer. 5 of these women had LCIS and 2 had atypia. Their age ranged from 50 to 88. 3 out of these 7 patients took tamoxifen. The stage ranged from I to II. None had a known first degree family member with bc. (6 had no first degree family history, and in one the family history was unknown.)

Of the 7 MRI screened patients who developed cancer, age range 43-57, none used tamoxifen. One of these 7 had atypia. In this patient, the cancer was discovered via a palpable mass after recent negative MRI and mammo. The other 6 had LCIS. One of these 6 LCIS patients, who had a first degree relative with breast cancer, was found to have cancer incidentally on risk-reducing mastectomy. 5 of the 7 patients with cancer had NO first degree relative with breast cancer. The stage ranged from 0-1.



This group may be among the larger studied groups of more homogeneous AH and LCIS patients. I say this because all these patients came from one institution, so likely had more consistent definitions of LCIS and AH (unlike the Li et al paper http://www.ncbi.nlm.nih.gov/sites/entrez...Pubmed_RVDocSum

This is the only paper the ACS paper cited for LCIS in the MRI study.

Unfortunately tables do not show up properly, but you can match the age/
menopausal status/family history of the women who developed cancer.

TABLE 2. Profiles of patients who developed cancer
(A) Profile of non-MRI-screened patients who developed cancer
Patient Prev bx Age
Menopausal
status
Family history
(first-degree relative
with breast cancer)
Tamoxifen/
raloxifene use Tumor size (cm)
Lymph node
status BIRADS (mammo)
1 Atypia 56 Post 0 No 4.0 Positive 5
2 LCIS 62 Post 0 Yes 0.4 Negative 4
3 LCIS 59 Post 0 Yes 1.0 Positive 4
4 LCIS 88 Post Unknown No 1.3 Negative 4
5 Atypia 61 Post 0 No 0.7 Negative Negative/palpable mass
6** LCIS 55 Peri 0 Yes 1.2 (lt)
DCIS (rt)
Negative Negative/palpable mass
(lt) 3 (rt)
7** LCIS 50 Peri 0 No 0.7 Negative 4
(B) Profile of MRI-screened patients who developed cancer
Patient Prev bx Age
Menopausal
status
Family history
(first-degree
relative with
breast cancer)
Tamoxifen/
raloxifene use
Tumor
size (cm)
Lymph node
status
BIRADS
(mammo)
BIRADS
(MRI)
1 LCIS 43 Pre 0 No 0.9 Negative Negative 4
2 LCIS 43 Pre 0 No 0.2 Negative Negative 4
3 LCIS 51 Peri 0 No 0.7 (lt)
0.65 (rt)
Negative Negative
(bilateral)
4 (bilateral)
4 LCIS 55 Post 1 No DCIS Not done Negative 4
5 LCIS 39 Pre 0 No DCIS Not done Negative 4
6* LCIS 49 Pre 1 No 0.35 Negative Negative 4 (bilateral)
7** Atypia 57 Post 0 No 2.5 Positive Negative Negative
http://www.springerlink.com/content/p755k56248g052n7/fulltext.pdf

So they must be defining 'younger' as <=57, approximately.


Just thought those of us with LCIS and/or AH might like to know.

Anonymous

Leaf--I've always found it very interesting ( and a little bit scary as well) that article states "LCIS women have a 5.3 fold increase over DCIS women for developing ILC", yet LCIS is not considered/ or treated as seriously as DCIS. I for one, feel LCIS is probably a precursor of invasive disease (JMO of course, but I think there are others that may agree) rather than just a marker for increased risk. That's why I pushed for closer monitoring. Intuitively, I just feel I'll probably end up with ILC like my mom did; but I'm not ready to really seriously consider BPMs at this time. I'm sure that would change if they ever found any invasive bc---my next MRI is in 3 weeks and I'm already getting a bit nervous about it coming up. So I share your anxiety about living with high risk every day. I find that prayer helps me enormously and helps to keep me centered.
Sending prayers your way for peace throughout this bc journey.

Anne

leaf

Best of luck on your MRIs, awb. I have my mammos+us in 3 weeks.

To me, the Li abstract says "LCIS patients were 5.3-fold more likely than DCIS patients to develop invasive lobular carcinomas." Still, LCIS women had a larger total number of cases of bc than did DCIS patients (whether you are counting ipsilateral, contralateral, or bilateral). "Among DCIS patients, incidence rates of ipsilateral and contralateral invasive breast cancer were 5.4/1000 person-years and 4.5/1000 person-years, respectively; and among LCIS patients, incidence rates were 7.3/1000 person-years and 5.2/1000 person-years, respectively." http://www.ncbi.nlm.nih.gov/sites/entrez...Pubmed_RVDocSum

I think it is interesting to see the skimpy data in the Port study (7 patients who got bc who were screened by MRI in this case) on which they make these determinations. Well, they have nothing more to go on.

I did learn something else new: they referred to a model I had not previously heard of: "The Gail, Claus, and Tyrer-Cusick models estimate breast cancer risk based on family history, sometimes in combination with other risk factors, such as reproductive history or prior breast biopsies.16,21–23 " http://caonline.amcancersoc.org/cgi/content/full/57/2/75

I had not heard of the Tyrer-Cusick model. Since I have a weak family history, it may not be applicable to me, but it may to women with a stronger family history.

Again, best of luck, Anne.

Peaches70

Crossed fingers and prayers for both of you! Just getting through these next few weeks with normal blood pressure will be a challenge. May your results be DEFINITIVELY B9! It's this uncertainty that's such a problem.

Kitwe

I have LCIS

I need a good team of docs. I live in South Florida. Sloan Kettering or Duke are the only places I know of. If I have to travel I will but it would be great to find some place close. I have no known family history of BC. Any suggestions?



My fingers are crossed & my prayers are with all you brave ladies. Thanx for this great site of support!

moogie

Suze:

If a trip is not a deterrent , the High Risk Breast Center at Duke has studies monitoring women at risk and might be of interest to you. The cutting edge care for many areas of medical concern  still in the "gray area" is most often found in settings where translational research is being done.

Moogie

bandyk4

Cheryl 54 - Can you tell me who did your surgery at KU Med?

Thanks

wishiwere

2nd time I read through this thread and guess what?  I'm still so majorly confused, tis' scary!

leaf

My problem was that I couldn't find any guestimates about my risk for LCIS - having a weak family history, LCIS, ALH and nothing worse.  (This occured before the LCIS forum, below, was created.)

The main gist of the thread was that I found out how poorly we can predict breast cancer - we really do not know what causes it.   We can fairly accurately predict how many women in a town in the United States or Florence, Italy may get breast cancer, but we have very little idea WHICH of these women will get breast cancer.  

 In the meantime, bc.org updated their estimates of risk for LCIS - to about  30-40% lifetime risk by one estimate, or, in another estimate, increases the breast cancer risk to 21% over the next 15 years. http://www.breastcancer.org/symptoms/types/lcis/cancer_risk.jsp  .  (Most LCIS is diagnosed in the 40-50 year old age group.)

They also updated the LCIS  treatment options. http://www.breastcancer.org/symptoms/types/lcis/treatment.jsp

Has anyone participated in clinical trials for LCIS and nothing worse?

The ones I can find are:

Soy Protein Supplement In Treating Hot Flashes in Postmenopausal Women Receiving Tamoxifen for Breast Disease

Exemestane in Treating Postmenopausal Women at High Risk for Invasive Breast Cancer

Letrozole in Preventing Breast Cancer in Postmenopausal Women

Possibly for LCIS women who have had surgery 
Infliximab in Treating Cancer-Related Fatigue in Postmenopausal Women Who Have Undergone Treatment for Stage 0, Stage I, or Stage II Breast Cancer

Atorvastatin in Preventing Breast Cancer in Women at Increased Risk for Breast Cancer