atypical lobular hyperplasia/tamoxifen

treetoo · October 2009

Since I have been diagnosed with ALH I was never told to take tamoxifen, as a matter of fact, the surgeon, and pathologist told me not to take it.

I was wondering how many woman were diagnosed with ALH, and then got diagnosed with BC?

Thanks, Treetoo

treetoo · October 2009

Since I have been diagnosed with ALH I was never told to take tamoxafin, as a matter of fact, the surgeon, and pathologist told me not to take it.

I was wondering how many woman were diagnosed with ALH, and then got diagnosed with BC?

Thanks, Treetoo

Anonymous · October 2009

treetoo---I don't know the statistics on ALH and invasive bc, and I'm not sure if they even have any that truly reflect how many women with ALH eventually end up with invasive bc. I have LCIS (a step further along the bc spectrum with twice the risk of ALH) and stats show that invasive bc is found in 15 to 30% of excisional biopsies after a diagnosis of LCIS on core biopsy. Do you have any family history of bc? The recommendation for ADH/ALH is often close monitoring with the addition of tamoxifen IF there are other significant risk factors, such as close family history of bc. (I took tamox for 5 years as I have LCIS and family history--mom had ILC)

Anne

chapstickmom · October 2009

I just found out I have a small amount of ADH ,(duct not lobular) . Here are the recommendations I was given. 1. High risk monitoring - ultrasound and mammogram every 6 months with yearly MRI and tamoxifen for 5 years. or 2. double mastectomy -probably with tamoxifen for 5 years as well. I am going to do the high risk monitoring with tamoxifen and see what the next set of mammos/ultrasound look like.

I was also told to stop alcohol, stop soy (there is contradictory info on soy) and to get my weight down to a BMI of 25 and exercise 4 hours a week. I was referred to a registered dietician who specializes in cancer. She has put a plan together for me that is no soy, low in red meat and saturated fat and high in whole grain - quinoa and all that as well as whole wheat. I have only been on it 2 days but so far so good.

Also someone posted a study on this site, I think from Mayo Clinic that with ADH your risk doesn't increase any further with a family history so you don't need that to go on Tamoxifen.

You should search on here for atypical ductal hyperplasia and read the postings. Also american cancer society and mayoclinic.org have info on ADH , tamoxifen and 'chemoprevention'.

Go see your doctor and ask for tamoxifen. Make sure you are seeing a breast surgeon not a general surgeon who isn't so up on these things. I found an article that says 15% of american women would benefit from tamoxifen but few are offered it by their doctors.

ps - I have been told my BC risk is 4% a year ,27% in the next 30 years. the average woman is I think 1.7% in a year and 10% in 30 years.You can do the Gail risk model for yourself. Google it, I think it is on the american cancer web site but not sure. Takes 2 minutes to do.

leaf · October 2009

Here's the website from the NCI for the modified Gail model. http://www.cancer.gov/bcrisktool/

However, note that there are serious doubts about how well the Gail model predicts YOUR INDIVIDUAL risk. There are different ways that statistics are evaluated.

One way is looking at how well the Gail model predicts how many people in a population will get breast cancer. The Gail model is quite good at that.

"The Gail model 2 has been shown to be well calibrated, with the predicted number of breast cancers being nearly equal to the number of breast cancers observed [43]. However, the C-statistic for the model is low and has been estimated to be equal to 0.58 in an external validation study [46]. Because of this modest concordance between observed and predicted events, the Gail model is currently of limited practical usefulness for obtaining risk estimates for any given individual. Even so, it remains the most commonly used tool for breast cancer risk prediction." http://breast-cancer-research.com/content/9/6/217

What is this C-statistic? It is the concordance. That's another way of evaluating a model. Concordance means they have 2 groups of people: in this case: the group that got breast cancer, and the group that didn't get breast cancer. They take a random person from each group, and compare their Gail model scores. If the Gail model worked perfectly, then every randomly selected person with breast cancer would have a higher score than the randomly selected person without breast cancer, and their concordance score would be 1.

If the model only did as good as chance, then half of the time the person with breast cancer would have a score higher than the healthy person, but half of the time the healthy person would get a score higher than the breast cancer person, and their concordance score would be 0.5.
The Gail model has gotten concordance scores of about 0.58,which is only slightly better than the roll of the dice (which would be 0.5). Remember, if the model was perfect, it would have a concordance score of 1.

The addition of breast density didn't change this score significantly. " The increase in the C-statistic with the addition of either the BI-RADS density [47,48] or percentage density [49] was modest for every model (Figure 2) and ranged from 0.01 to 0.06."http://breast-cancer-research.com/content/9/6/217 So this would increase the concordance to about 0.59 - 0.65. Still not marvelous.

I have classic LCIS, ALH, and nothing worse. I have a weak family history. I have been told by my oncologist that I probably have a lifetime risk of breast cancer of about 30-40%. I went to an NCI-certified breast cancer center and asked the same question. They said my risk was "somewhere between 10% and 60%, but probably closer to 10%. To find out more you'd have to read journals."

"Proliferative lesions with atypia: In these conditions, there is excessive growth of cells in the ducts or lobules of the breast tissue, and the cells no longer appear normal. They have a stronger effect on breast cancer risk, raising it 4 to 5 times higher than normal. They include:
atypical ductal hyperplasia (ADH)
atypical lobular hyperplasia (ALH)
Women with a family history of breast cancer and either hyperplasia or atypical hyperplasia have an even higher risk of developing a breast cancer.
For more information on these conditions, see the separate American Cancer Society document, Non-cancerous Breast Conditions.
Lobular carcinoma in situ
Women with lobular carcinoma in situ (LCIS) have a 7- to 11-fold increased risk of developing cancer in either breast."http://www.cancer.org/docroot/CRI/content/CRI_2_4_2X_What_are_the_risk_factors_for_breast_cancer_5.asp?sitearea=

Before you have a heart attack, these 4-5 X risk and 7-11 X risk are NOT NOT NOT the 10% or 13% ‘mean lifetime risk’ for a woman in the US. The baseline risk is the risk of a woman WITHOUT any particular risk factors, which is more like 3-5%. So if your relative risk was 4-5X, then your lifetime actual risk might be something like 4-5 x 3-5= about 12-25%.

Also, risk factors are NOT NECESSARILY additive. For example, alcohol alone increases the risk of breast cancer. But women with alcohol PLUS another risk factor (I can't remember what it was) did NOT have an additionally elevated risk. That’s why its important for models with many risk factors to compare the model prediction to people who have these specific many risk factors.

I'm just trying to let you get some idea about the UNCERTAINTY we have in predicting whether or not any particular person will get breast cancer.

treetoo · October 2009

I have an appointment next week for MRI, also an appointment with my dr.

I will let you know what he says, he is a top breast surgeon. Mel Silverstein

treetoo · November 2009

had my appointment. mri was all clear.

mel silverstein told me to have mri with mammogram once a year, no meds needed, but if i wanted to, i could ask an oncologist.

i did ask about every 6 months, but was told if I have a clear mri once a year i do not have to come in 6 months later for mammogram. i will continue my monthly breast checks.

was dx with atypical lobular hyperplasia 2 years ago.

tree

leaf · November 2009

Thank you for sharing your doctor's recommendations, treetoo. I'm glad you are being watched carefully.

Anonymous · November 2009

treetoo----clear MRI, that's great news! Breast MRI, mammo, and US all look at the breasts differently; some are better at detecting the invasive bc's, while the others are better at detecting the non-invasive bc's. So the rationale for doing both breast MRI and mammo is what one won't catch, hopefully the other will. By separating them out by 6 months (versus having them at the same time), you are watched more closely over time. Hopefully, if anything were to develop, it would be caught early when it is more easily treated.

anne

chapstickmom · November 2009

My doctor is also having me do both mammo and ultrasound every February and an MRI every August.

Separating them so I get one or the other every 6 months.

Milana90210 · November 2009

I was diagnosed with ALH after the biopsy. I asked my oncologist to do a surgery, although his first advice was just a regular monitoring. So I am waiting to get the date and asking myself if Imade a mistake asking for surgery...

Did anyone here with AHL have a surgery?

atypical lobular hyperplasia/tamoxifen

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