Focal Atypical Duct Hyperplasia

Thank you leaf.

Can you clarify for me what ALH and LCIS means? I am new to all of this and it is just overwhelming at times, And if I wanted to have my slides reread, do they have to be done at the same hospital where my surgeries were performed or can I have it dones somewhere else? I have just not been pleased with the results that I have been getting from this hospital/radiologist and am not certain I can trust the pathologist since the result on the last surgery was not labeled correctly. Am I just being paranoid or should I be concerned about all of this?  Thanks for your help and suggestions.

Thank you leaf for clarifying the differences. As I said this is all new to me and so is the terminology.

I live in North Carolina and if you know of any good institutions here for rereading the slides it would be appreciated. It is not that I question whether the slides are mine...I am questioning the competentcy of the radiologist that read them. There have been alot of mistakes made at this hospital and I just want to be certain that my dx is the correct one.

Thanks again and good luck to you as well. 

Thanks so much. I  will look at the site. I was treated at Duke for about 10 years for a staph infection that colonized in my lungs after pneumonia and was pleased with their infectious disease staff. I did not realize they had a high risk breast cancer program. Thanks again.

Karen,

 NYU Cancer Center has wonderful high risk medical oncologists & breast surgeons with a very personal approach for surveillance. For more info., see the link below.

http://ci.med.nyu.edu/community-outreach-and-education/programs/lynne-cohen-high-risk-womens-clinic/about

hello... I can relate to what you are feeling right now.. Because resently I am also diagnosed with this diasnosis. Focal atypical apocrine adenosis and hyperplasia.. Can I ask is this the same with your diagnosis? My oncologist told me not to worry and have a breast ultrasounnd after 9 months.. 9 months have passed and I'm having my ultrasound this coming friday.. I am really worried because I can feel another lump on my left breast. This really bothers me.

.

When I had a left breast mastectomy last January the pathology report said that I also had atypical ductal hyperplasia, atypical columnar cell change & fibroadenoma.  My doctors never said a word about this being a risk factor for the other breast. If this condition is present in one breast would it follow that it's also present in the other one?  I'm on a schedule of an MRI and mammogram every 6 months.  I thought it would be alternating but I have both exams coming up in December.  I'm seriously considering surgery to remove the right breast as well because I don't want to ever go through chemo & radiation again, but when I talk to my surgeon about this fear, he just dismisses it saying that I could still get breast cancer at the surgery site so it wouldn't be 100% effective.  Now I'll definitely ask my oncologist to explain the pathology results to me since I guess they weren't so clear about the first time! 

My surgical oncologist said to think about atypical ductual hyperplasia as a step before cancer. If you have been diagnoses with ADH, pleae be vigilant with follow-up testing and procdures.

Karen  my wife had a MRI and biopsy (benign) but had ADH  She has family history - mother (51) and older sister (60+) died of BC  She is 57   The standard of care proposed is lumpectomy (ing pong size) ---  Dr said ADH has 5%  risk that there may be somethingin surrounding tissue  and that is reason for this approach ---- I am on this and several other boards --- let'sstay in touch and trade notes - I will hook you up with my wife

 Larry - MA

I had no family history.  And the healthy breast that I removed, also had atypia, apocrine metaplasia and ductal hyperplasia.  All considered benign conditions --------  but this is how the cancereous breast started out a few years ago.  I am so glad I opted for both.  It is not a decision to be made lightly at all.  Just know your risks and options to make the best decision for you. 

Hugs ~

Stratification of Breast Cancer Risk in Women With Atypia: A Mayo Cohort Study:

http://jco.ascopubs.org/cgi/content/full/25/19/2671

DISCUSSION :

Having reliable breast cancer risk estimates for women withatypical hyperplasia is imperative in order to tailor theircare appropriately. For women with atypia, the Gail model isthe only model available for risk prediction.⁸ In this model,calculations of risk for women with atypia and a family historyare dramatically higher, based on prior evidence from the Nashvillestudy.² Therefore, for a 50-year-old white woman with menarcheat age 12, first birth at 24, and atypia on breast biopsy, thepredicted lifetime risk of breast cancer is 17.5%. If that samewoman also has a first-degree relative with breast cancer, herlifetime risk doubles to 34%. Our data indicate that the Gailmodel predicts inaccurately for such women because the increasedrisk of breast cancer associated with atypia is independentof the effect of family history.

Women in our cohort with atypia and a positive family historyof breast cancer had no additional increased risk of breastcancer over that of atypia alone. This finding counters thecommonly held view proposed by the Nashville study (ie, thatatypia and a positive family history increase breast cancerrisk additively). When data from other major studies of benignbreast disease are considered along with the Mayo findings,the preponderance of evidence calls into question the resultfrom the Nashville group. In that study, the subgroup of womenwith atypia and a family history was small (n = 39) with anRR of 8.9 (95% CI, 4.8 to 17), compared with 3.5 (95% CI, 2.3to 5.5) in 193 women with atypia and no family history.² Incontrast, evaluation of a much larger population in the BreastCancer Detection and Demonstration Project showed similar frequenciesof breast cancer in women with atypia and family history (16of 261, 6.1%) compared with those with atypia alone (51 of 1,044,4.9%).⁴ Recent data from the Nurses' Health Study confirm ourfinding that a family history of breast cancer in a first-degreerelative does not further increase risk among women with atypicalhyperplasia.¹⁵ To explain these findings, we postulate thatatypical hyperplasia is a phenotype reflecting increased risk;this phenotype derives from both inherited risk and lifetimeexposures. Thus, the histologic presence of atypia already reflectsthe increased breast cancer risk inherent in a positive familyhistory.

We have identified a new histologic variable that appears tostratify risk in women with atypia: multifocality. The RR ofbreast cancer increases in a dose-response fashion for womenwith one, two, and three or more foci of atypia, with a statisticallysignificant test for trend. With a single focus, the cumulativeincidence of breast cancer reached 18% at 25 years. For womenwith two or more foci of atypia, the cumulative risk of breastcancer was greater than 40% at 25 years. Moreover, in the highestrisk subgroup of women with three or more foci and histologiccalcifications, the cumulative incidence exceeded 50% over 25years. This level of risk approaches that reported for carriersof BRCA mutations.¹⁶ In line with our observation, differentialrisk based on extent of disease has been established for lobularneoplasia (ie, ALH v lobular carcinoma),¹⁷ and the number offoci of atypia found in core needle biopsy specimens correlateswith the likelihood of finding cancer at surgical excision.¹⁸

Some may question whether multifocal atypias may actually representsubtle in situ carcinoma, particularly those of the ADH type.In cases of multifocal ADH, it should be emphasized that individualfoci arose in separate and distinct terminal duct lobular units,none of which measured more than 2 mm. Hence, these examplesfailed to exhibit the confluent degree of cellular proliferationrequisite for a diagnosis of DCIS. We submit that more widespreaddistribution of atypical foci within breast tissue signals alarger burden of at-risk tissue that has progressed along thecontinuum toward breast cancer. The data presented in this articleprovide evidence that the extent of premalignant breast changeis related to subsequent cancer risk. Since this is the firstreport of the clinical relevance of this histologic finding,we recognize the need for validation and plan to evaluate thisfactor in a more recent cohort from our institution. Furthermore,we hope that other research groups with large numbers of patientswith atypical hyperplasia will also examine the relevance ofmultifocal atypia in their study sets.

Age at the diagnosis of atypia also emerged as a significantmodifier of subsequent breast cancer risk, with a higher RRin younger women. The Nurses Health Study⁶ and the Breast CancerDetection and Demonstration Project⁴ have also shown higherrisk in younger women with atypia. In our cohort, this increasedrisk in younger women is not explained by more frequent multifocaldisease or a positive family history. Perhaps atypical hyperplasiapresent at a young age is the result of previous oncogenic events;alternatively, breast tissue with atypia may be unusually susceptibleto proposed oncogenic estrogen metabolites associated with thepremenopausal hormonal environment.¹⁹

When counseling women with atypical hyperplasia, the lengthof time at risk is a key element in planning risk-reductionstrategies. Dupont and Page⁹ reported that the greatest riskof breast cancer after a diagnosis of atypia lies in the first10 years, with subsequent RR reduced by half (P = .06). By contrast,the Nurses Health Study¹⁰ found that risk does not decreaseover time, with RR slightly higher more than 10 years afterbiopsy (RR, 3.6) compared with the first 10 years (RR, 3.2).Our data confirm that the RR for breast cancer after a biopsydemonstrating atypia remains significantly elevated for at least15 years.

Data on long-term absolute risk are more useful than RR estimateswhen counseling patients. Our study provides estimates of absoluterisk for women with atypia and indicates a higher cumulativeincidence of breast cancer with long-term follow-up than hasbeen reported by other studies. Figures from the study of Dupontand Page show a cumulative breast cancer incidence of 13% at20 years and 23% at 25 years in women with atypia.⁹ The cumulativeincidences identified in our cohort were higher: 21% at 20 yearsand 29% at 25 years. One factor contributing to this differenceis our inclusion of DCIS as a recordable breast cancer event,whereas the Nashville study counted only cases of invasive breastcancer.² Because DCIS currently receives local treatment (andin some cases, systemic treatment) similar to that for early-stageinvasive breast cancer, it is reasonable to include cases ofDCIS when estimating risk.

Our data on the laterality of subsequent breast cancer do notallow conclusions regarding atypical hyperplasia acting as aprecursor lesion, yet there is a suggestion of predilectionfor the ipsilateral breast that requires ongoing study. Breastcancers occurring in the first 10 years after atypia diagnosiswere significantly more likely to occur in the ipsilateral breast.A recent study of gene expression profiling identified remarkablysimilar alterations in gene expression among ADH, DCIS, andinvasive cancers found in the same specimen, supporting therole of atypical hyperplasia as a precursor lesion.²⁰Regardingdifferences in ipsilateral risk for ductal versus lobular atypia,we found that risk was equal for both breasts after a diagnosisof ALH, which is consistent with the distribution of invasivebreast cancers after a diagnosis of lobular carcinoma in situ.²¹In contrast, ADH was more likely associated with a later ipsilateralbreast cancer, as has been shown for DCIS untreated after diagnosticbiopsy.²²

In conclusion, our study provides a comprehensive analysis ofbreast cancer risk associated with atypical hyperplasia. Thesefindings confirm a four-fold RR of subsequent breast cancerin women with atypical hyperplasia. We estimate that the long-termabsolute risk of subsequent breast cancer (in situ or invasive)is higher than previously reported-at least 25% at 25years, and as high as 50% to 60% in a high-risk subgroup definedby multifocality and calcifications. A positive family historydoes not confer significantly increased risk in women with atypia.Improved risk prediction and stratification is now possibleto guide risk-reduction counseling for women with atypical hyperplasia.

Karen...  I can not tell you what to do.  As I myself know it is a difficult decision.  Taking something to treat something YOU do NOT have "yet"...  (keyword)  I had ADH on 2 biopsies.  I was also referred to the oncologist who gave me the script for tamoxifen.  I did NOT take it.  I took my vitamins, drank green tea, exercised regularly, drank NO alcohol whatsoever... and here I am 3 years later just recovering from a bl max.  Do your research, ask questions ~ and try to make the best decision for you.  Be proactive.  KNOW your breasts and be vigiliant with your self exams.  I found my lump myself.  Wishing you luck and sending you prayers.  I hope you remain disease free.  I would wish this on absolutely no one.