Atypical Hyperplasia

I had an excisional biopsy earlier this month, and I was diagnosed with atypical ductal hyperplasia (ADH). Having ADH does increase your risk of developing breast cancer.

I have family history too, and my surgeon referred me to an oncologist for follow up.  The oncologist ordered a breast MRI, to make sure there is nothing else going on at the moment (I'm waiting for the results now).  I will also have mammos every 6 months, and the oncologist wants me to see both her and the surgeon annually, but to alternate the appointments so I see one of them every 6 months (for a clinical breast exam and to review the mammograms).  I'm also a candidate for Tamoxifen, but I'm going to wait and see if the MRI shows anything before I make a decision. 

I agree with Sheila, you can certainly wait 6 months and tell your physician about your family history then.  The only thing he/she would do differently at this point would be to refer you to an oncologist to discuss taking Tamoxifen.  While Tamoxifen has been shown to be effective in cutting the risk of developing breast cancer in high risk women, it can have some potentially serious side effects. 

Dukemom

Beth, for me it was standard procedure to remove the area surrounding the core biopsy showing ADH just to make sure that they didn't miss anything with the needle biopsy. I was through the needle biopsy/lumpectomies 3 times in just over 24 months. I told the ladies in the radiology dept who did the sterotactic biopsies the second time, 'been there, done that, got the t-shirt. The third time, 'I'm looking for Bill Murray and singing I got you babe.'

Sheila

Hi, DukeMom2 - I had the same this past month - excisional biopsy with ADH (and also LCIS).  I had a Gamma test to look at the breasts more closely (also called a "nuclear" test), and will probably have a core biopsy on the other side now.  But... anyway... I will also consider Tamoxifen, once I have all the info in front of me. I will look forward to seeing what you decide to do, given your own circumstances.  It's interesting to know someone somewhere going through something similar... (by the way - where did you get DukeMom2? Did you go to Duke U?  I did.)

Thanks for sharing your story.

Hi there! There are 2 types of atypical hyperplasia, ADH and ALH. (I have ALH as well as LCIS.) Different doctors or places have different protocols for following higher risk people.



Some places have more frequent monitoring for 6mo-1 year after any biopsy, then if they turn out clean the follow them less frequently. But this differs from place to place.

rbcrhodes,

I hear you about the hot flashes. Last summer, between the heat and the Evista and menopause, I was miserable. Hopefully this year will be better.

I have found a few things that seem to help with the hot flashes. I use cold packs on my neck. At night, I take an actual little cold block (like you use in a cooler) and wedge it behind my neck, scrunching up the pillow to help cushion the edge. I lay on my back as long as I can stand it. I also put a glass of ice near the bed to sip when I wake up. I tend to wake up just before the hot flash hits. We have a fan at the foot of the bed, even when it's not hot. I wear the lightest nightie I can find - plain cotton or blend. I keep my feet out of the covers.

During the day, I take the cold packs you use for pain relief and wrap them around my neck or tuck them into a neckline. This and cutting back on caffiene seem to make a difference, albeit it small. The other thing that I have read about recently in more than one place is that exercise helps for most people. I do exercise a lot. I have to admit that days when I do seem a little better than those when I don't or can't.

Oh, for the time when I could take HRT. That really worked.

Anne