Diagnosed with Atypical Ductal Hyperplasia....question

Until recently, the National Cancer Institute was very clear in saying that they only recommended Tamoxifen for patients with ADH if the patients had other risk factors as well - ADH alone was not considered to present a high enough breast cancer risk to warrant the side effects and risks of Tamoxifen.

The NCI recently rewrote their guidelines based on newly released research results.  Here's what they now say:

The abnormal cells found in these conditions are not cancer cells.  If you have ALH, ADH, or LCIS, talk with a doctor who specializes in breast health to make a plan that works best for you. Depending on your personal and family medical history, it may include:

• Mammograms every year
• Clinical breast exams every 6 to 12 months
• Tamoxifen (for all women) or raloxifene(for postmenopausal women). These drugs have been shown to lower some women's risk of breast cancer.

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So they still include the provision "Depending on your personal and family medical history" but they are not as directive in saying that those who only have ADH as a risk factor should not take Tamoxifen.  http://www.cancer.gov/cancertopics/screening/understanding-breast-changes/page8

And here's the American Cancer Society's position on this:

Based largely on the results of the Breast Cancer Prevention Trial (BCPT), the Food and Drug Administration (FDA) approved tamoxifen to reduce the risk of breast cancer in women whose risk of developing the disease was at least 1.7% within the next 5 years based on their Gail score (calculated using the Gail Model risk tool). This included all women over the age of 60, as well as those between 35 and 59 with factors that increased their risk to this level, whether or not they had gone through menopause....

...Still, having a 1.7% risk of developing breast cancer over 5 years is the same as having a 98.3% chance of NOT getting breast cancer in the next 5 years. This means that most of the women who take a drug to lower breast cancer risk would never have developed cancer in the first place. Also, because these drugs can have some serious side effects, not everyone who meets the FDA requirements for taking tamoxifen or raloxifene for breast cancer risk reduction would necessarily have an overall benefit from it....

...Studies estimate that about 3 out of 20 (15%) women over the age of 35 would be eligible to take tamoxifen to reduce their risk of breast cancer, according to the FDA criteria.... But only about 1 in 3 of these eligible women would have benefits that would be likely to outweigh the risk....

...Some experts think that more research is needed to learn more about the benefits and risks of taking these drugs for breast cancer risk reduction. Although studies have shown a lower risk of breast cancer, this did not translate into any effect on deaths from breast cancer or other causes in women followed for up to 10 years.

http://www.cancer.org/cancer/breastcancer/moreinformation/medicinestoreducebreastcancer/medicines-to-reduce-breast-cancer-risk-weighing-risks-and-benefits

So the jury is out on whether or not Tamoxifen is advisable for someone who is high risk. Different doctors feel differently on it and so much of it depends on the specifics of your situation.

As for other screenings, if you have extremely dense breasts, then ultrasounds probably are advisable, in addition to mammograms.  It's worth asking the breast surgeon about this.

Hi Momcat, what prompted the excisional biopsy if no form of imaging showed calcifications? Were there other abnormalities noted on imaging that prompted the biopsy and the ADH was found "incidentally?"

Since you want input from others with ADH, I'll tell my story.  I was diagnosed with ADH and ALH by excisional biopsy after a mammogram showed a linear array of microcalcifications 18 years ago.  I never had a stereotactic biopsy.  I don't even believe they did core biopsies 17 years ago, only fine needle biopsies.  Anyway, I was only monitored with yearly mammos and sonos for a number of years, and then I stopped having sonos.  I never went to a "high risk" clinic, just the regular screenings.  I had two additional surgical biopsies on that breast which were benign, and a biopsy attempt on the other breast.  Last year, I had a core biopsy on the breast that had the ADH, and they found ADH again, but the surgical excisional biopsy showed DCIS and lots of it.  I don't regret having had less surveillance than some get for ADH, but I do regret, slightly, that the radiologists didn't really scrutinize the imaging over the past few years.  The surgeon at my latest hospital was surprised that they didn't really carefully study the calcifications that were growing, given the ADH history and family history.  So, the upshot is that there was a lot of DCIS and it required three surgeries to get clean margins.  I AM glad that the radiologist last year (at the same facility) did take the time to examine four years worth of imaging and noted a progression over time.  I think she did a big thing for me, given that the DCIS was high grade, multifocal and with comedonecrosis.  I don't regret never taking Tamoxifen or not having multiple years of MRI's, etc.  I'm still putting off taking hormonals because I've got other health issues which would be challenged by them (as do you, apparently).  I think that many people probably have ADH and never find out about it, and most of the time it doesn't even lead to something. If I were to recommend anything to you, it would be for you to find a high-risk clinic at an NCI-designated facility, where the imaging can be scrutinized very carefully.  So, maybe it's not only how OFTEN one is scanned, but how expert the radiologist is, and frankly, how good the equipment is.  If you are thought of as a high risk patient, they will also read the scans extra carefully. So mammo and sono are not perfect, but they are still good tools in the right hands.

I know ADH increases your risk for the chance that you may get breast cancer, but is a mastectomy really a necessary medicine. Seems so extreme.? .?

Hi Kelly, Colleen does have a very strong family history of bc, but it was documented on another thread.  It seems like it is an appropriate choice for her.

Jessica, my surgeon broke the scalpel cutting the breast tissue during the most recent surgery, and I also had breast surgery many years ago (excisional biopsy) during which I was awake (yikes!) and receiving only local anesthesia.  It felt like he was cutting through something very dense and thick.  Whether this is directly related to "density" as seen on imaging, I'm not sure, although until very recently, I have had very dense breasts.  Its starting to improve.

PS Re your grandmothers-of course you know to get colonoscopies starting at age 40.   The CW is to start at age 50 but with two second degree relatives you are at an increasted family risk.  How often, I suppose you could talk to the GE. I think the CW is every 10, but again, you have increased family risk, not nec high risk.