High risk & breast surgeon said yearly is ok. Advice please!

LindaAnn62

10 days ago I had a lumpectomy for LCIS, ADH & Flat Epithelial Atypia,  I am 52 w/ dense breasts & 10 years ago had a fibroidenoma  Follow-up with surgeon today & he told me since no cancer  I should just keep up with my yearly mammograms & twice a year breast exams. When I talked risk he said lifetime risk of getting BC was 1 in 12 & mine is 1 in 11. I mentioned when I had the fibroid I had to come in every 6 months for 3 years for mammos, he said only when they feel it needs to be watched.

Research & sites I have been on besides here (John Hopkins, Mayo, &  American Cancer Society) say follow up for wait & monitor is every 3 to 6 months. Also lifetime risk is 1 in 8 not, 1 in 12. While I like the doctor I'm not comfortable going w/ yearly mammos & 2x exams w/ these risk factors. I don't think I'm making the situation catastrophic, I know it's not but I think the surgeon is being lax. I don't want to be hyper vigilant but don't want to be too casual about it.

I would really like some feedback. Thanks, Linda

MelissaDallas

Monitor every six months can be mammogram and clinical physical breast exam alternating.

Lilith08

LindaAnn62, as I understand it, the average lifetime risk for all women (and maybe this number is based on the US population? not sure) is 12%, which translates to about 1 in 8 women developing breast cancer at some point in life. Did your BS tell you what your Gail Model risk is? That's what the doctors use here, but I think any risk calculator is imperfect. You can actually work it out yourself, using an online tool like this one: http://www.cancer.gov/bcrisktool/

But it also sounds like your main concern is follow-up. I think I'd want closer follow-up, too. It's not a bad idea to get a second opinion, and perhaps you can find someone you feel is a better match for your needs. Wishing you well.

leaf

The NCCN guidelines for LCIS are once-a-year mammograms and once or twice a year clinical exams (for women who have NOT had bilateral mastectomies).  I get once-yearly mammograms and once or twice yearly clinical exams.   My oncologist doesn't want to see me anymore, some 10 years down the road after my LCIS diagnosis.  (I do _not_ have ADH or FEA, but I do have ALH and ductal hyperplasia, not atypical ductal hyperplasia.)

http://www.nccn.org/patients/guidelines/stage_0_br...

I think  they really don't know the increased risk of breast cancer for a woman with LCIS.  I think the modified Gail model is imperfect for individual women, even the 'average' woman in the US.

http://jnci.oxfordjournals.org/content/98/23/1673....

If they are this bad for the 'average' woman in the US, imagine how bad they are for a woman with a unusual breast condition like LCIS.  (The modified Gail model automatically excludes women with LCIS or DCIS, if you read the fine print.) When I had a 2nd opinion at an NCI-certified cancer center, they said that 'my future risk of breast cancer was somewhere between 10% and 60% - but of those two numbers it was probably closer to 10% than 60%, and if I wanted any better numbers, I'd need to go to the literature.)  Probably the longest term study of LCIS women is the Chuba study.They found The minimum
risk of developing IBC <invasive breast cancer> after LCIS is 7.1% at 10 years.

http://jco.ascopubs.org/content/23/24/5534.long

Anonymous

I was diagnosed  11 years ago with LCIS and  my risk is further elevated by my mom's ILC (many years ago--she is a survivor of almost 28 years after lumpectomy, radiation an tamoxifen)--I do high risk surveillance of alternating MRIs and mammos every 6 months with breast exams on the opposite 6 months, I took tamox for 5 years and now I have been on evista for over 5 years for further preventation. The risk with LCIS is significantly higher than with a fibroadenoma (which is benign) and requires more serious long-term follow-up, I have been told my risk is at least 35% (which  is 1 in 3); but perhaps that is because of my family history  in the mix.  I would consider seeking out a 2nd opinion.

anne

farmerlucy

When I met with a genetic counselor (three years ago) after my ALH and ADH diagnosis, the GC felt my lifetime risk was about 50%. I do have the high risk family, with very early onset BC for my mother and aunt. Had I not chosen to have a PBM my screening protocol would have been the same as awb. In hindsight, I wish someone would have talked to me about tamoxifen in my early forties. 

Pita119

Hi farmerLucy,

I have a very high risk of breast cancer in my family...maternal grandmother, mother and sister.  As a result, I have been very consistent with preventative care.  I had mammograms every year, did self exams every month, went for clinical exams every 6 months and took Tamoxifen for 5 years when I was in my early 40s only to be diagnosed with breast cancer a couple of weeks ago.  It just goes to show that even with all the preventive measures that recommended, it can still happen.  Your only chance of catching it early is to keep on top of it.

farmerlucy

hi pita  - I'm so sorry about your dx. You were quite brave to take the tamoxifen.  I hope things go smoothly for you.

LindaAnn62

Thank you for all your responses and Pita I'm sorry. I think you are right about keeping on top of it. My paternal grandmother died of bc at 62, first diagnosed at 55,but bc was the last thing I was worried about. 

As Lillith wrote my main concern is follow up. The follow-up guidelines for LCIS, as I understand it, are if LCIS is the only risk factor but I also have ADH, FEA and dense breasts which in my mind add additional risk. And besides this is my life I can't be casual about follow-up regardless of what the guidelines say. Also, the doctor had the stats wrong, I knew it was 1 in 8 (12%) not 1 in 12, and since he had the stats wrong I knew I wouldn't have any confidence in him. 1 in 8, as Leaf said is bad for the average women, not to mention that figure is for women with NO risk factors! And he never talked about the Gail model which I thought for sure he would. Again too just too casual (and uninformed) for me! I can and will get a 2nd opinion.

I could just think ok I'll go with what he said but if I did and next August I go back and now they find cancer that indicates it was there for 6 months I feel I would only have myself to blame because I knew I should have insisted on closer follow-up.

Thanks again, Linda

leaf

I think the science of predicting who will get invasive breast cancer is in its infancy.  In addition, almost everything about LCIS is controversial.

Lifetime Risk of Developing Cancer: Approximately 12.3
percent of women will be diagnosed with breast cancer at some point
during their lifetime, based on 2009-2011 data. 

http://seer.cancer.gov/statfacts/html/breast.html

This is NOT NOT the risk of a woman WITHOUT any risk factors.  This is the risk of the AVERAGE woman.  The AVERAGE woman has some risk factors.

The article jnci.oxfordjournals.org/content/98/23/1673.long  is saying that in the case of breast cancer, although they know the risk of the general population quite well, they know VERY LITTLE about the risk of a particular woman in that group.  So, even if you were an 'average woman', they would know the risk of the GROUP of average women is about 12-13%, but they know about zilch the risk of the INDIVIDUAL average woman.

The resulting calculation produced a concordance statistic, whose value
could range from 0.50 (equivalent to
a coin toss) to 1.0 (perfect discrimination). The
concordance statistics for the Italian and Gail models were essentially
the same, approximately 0.59 (with 95% confidence
intervals that ranged from 0.54 to 0.63). In other words, for 59% of the
randomly selected pairs of women, the risk estimated
for the woman who was diagnosed with breast cancer was higher than the
risk estimated for the woman who was not.
Unfortunately, for 41% of the pairs of women, the woman with breast
cancer received
a lower risk estimate than her cancer-free
counterpart. Thus, for any given woman, the two models were better at
prediction
than a coin toss—but not by much.

If the data is this bad for the average woman, just think how  well we know about women with an unusual condition - LCIS.  Note: We don't even know how many women have LCIS, because normally LCIS is only diagnosed when a woman has a breast biopsy.  Many women do not have breast biopsies, and we don't know how many women are walking around with LCIS and don't know it.

______

It is NOT statistically valid to add risk factors together unless you have specifically looked at the group that has all those risk factors. If you have both risk factor A (LCIS) and risk factor B (ADH) that does NOT NOT NOT mean that your total risk is the risk for Factor A + B. Instead, they must look at the group of women who have both risk factor A and B, and see what their risk is.  

For example,at one point, this breast cancer predictor, which does add your risk factors together, predicted that my lifetime risk  for breast cancer (without tamoxifen) was about 88%. (I have a weak family history.)  Warning:  If you use this calculator, please do NOT have a heart attack. 

http://www.halls.md/breast/risk.htm   I have NEVER had anyone, or any paper that gave any number this high (without hereditary risk factors or radiation TREATMENT to the chest.)   Halls' breast cancer risk predictor specifically says it has not been compared to populations, has not been peer reviewed, and should NOT be used to make health care decisions.

I know of no papers that have looked at the lifetime risk of women with LCIS PLUS ADH, let alone LCIS alone.  So, unless you have a Significant family history, or maybe treatment for lymphoma, we really don't know your risk for breast cancer.

  The modified Gail model says

Although a woman's risk may be accurately estimated, these predictions do not allow
one to say precisely which woman will develop breast cancer. In fact, some women
who do not develop breast cancer have higher risk estimates than some women who
do develop breast cancer.

http://www.cancer.gov/bcrisktool/about-tool.aspx

If you don't have a significant family history (such as first degree relatives with breast cancer), then, as this  paper 

jnci.oxfordjournals.org/content/98/23/1673.long pointed out, the

models were better at
prediction
than a coin toss—but not by much.

Anonymous

Linda, as Leaf mentioned, you don't add all those risk factors together.  (Your LCIS is the most serious, it "trumps" the other findings of ADH and the FEA.) Your risk is from the LCIS (which in itself is difficult to pinpoint risk exactly) but in the ballpark of 30-40%; but the fact that you have dense breasts does make it difficult to  see things on mammo, so I would strongly recommend you ask for MRI.  I have yearly MRIs due to my LCIS and I don't even have any breast density. (but my risk is further elevated significantly by my mom's ILC).

anne 

LindaAnn62

Leaf thank you for clarifying it for me. It is so confusing and you helped me understand it much better. I did go to the halls risk assessor to see what it would calculate. I scored 81% but I take that with a grain of salt. Everything I read on LCIS is so broad. One study or doctor says "it's a pre-malignant condition" another says "it's a benign condition" and everything in between. Figures, I and everyone else who has LCIS, would get the one where no one can agree! 

I think that I really just have to keep on top of it just like I keep on top of my Lupus (SLE). 

Linda

leaf

As awb said, I do _not_ think that the risk of an LCIS woman (without more prominent risk factors such as Significant family history or Significant radiation exposure to the chest) is anywhere near 80%.  The best study I've found about the long term risk of LCIS is the Chuba study

The minimum
risk of developing IBC <invasive breast cancer> after LCIS is 7.1% at 10 years.  http://jco.ascopubs.org/content/23/24/5534.long    

Since most LCIS is diagnosed in one's 40s or 50s, you can kind of guess (making a lot of extrapolation and invalid assumptions) - since most women don't live beyond about age 80, 7% x 4 = 28%. (I don't know enough about statistics to know if that's a valid equation, even if you make all these invalid assumptions.)  Maybe that's how I got figures of 30-40% from my health care providers, I don't know.

I'm just trying to make the point that whatever lifetime risk% your health provider gives you, (assuming you don't have family history or history of lymphoma) they probably do NOT know that number well.  (They may not know your number well even if you DO have family history or history of lymphoma, because there aren't many women who are in those groups.)

There is controversy about whether you consider LCIS as 'cancer' or 'premalignant'.   Part of this is because different people define 'cancer' differently. The NCI says

The term lobular carcinoma in situ (LCIS) is misleading. This
lesion is more appropriately termed lobular neoplasia. Strictly
speaking, it is not known to be a premalignant lesion, but rather a
marker that identifies women at an increased risk for subsequent
development of invasive breast cancer. This risk remains elevated even
beyond 2 decades, and most of the subsequent cancers are ductal rather
than lobular. LCIS is usually multicentric and is frequently bilateral.
In a large, prospective series from the National Surgical Adjuvant
Breast and Bowel Project (NSABP) with a 12-year follow-up of 182 women
with LCIS that was managed with excisional biopsy alone, 26 women
developed ipsilateral breast tumors (9 of the tumors were invasive).[1] In addition, 14 women developed contralateral breast tumors (10 of the tumors were invasive). 

http://www.cancer.gov/cancertopics/pdq/treatment/b...

As you can see from these numbers, 40 out of 182 women got breast tumors at 12 years, and of these 40 women, 19 women had invasive breast cancer.  The majority of LCIS women will probably NEVER get anything worse than their present LCIS.

I think you have the right attitude:

I think that I really just have to keep on top of it just like I keep on top of my Lupus (SLE).