ADH in both breast..but still have more lumps

You have been vigilant and no cancer has been detected. Time to trust your doctor and relax. Breast cancer isn't difficult to diagnose, right?

If you actually have other palpable lumps, they should be investigated.  The MRI sounds like a good idea.  If the MRI doesn't settle the issue, get a second opinion.  The other side of the coin is that many breasts have lumps that surgeons can tell are likely not to be cancer.  Did they see anything on mammo or sono imaging?  It's good you are getting the brca testing. Obviously, if you turn out to be BRCA positive, it's a whole other ball game.  Can the aunt and/or the cousin be tested first for the brca genes? If either of them are positive for brca, they can zero in on their mutation first.  If you are positive, then they don't usually test further, but if you are negative for that mutation they would do the entire panel. If you aren't brca positive, you have increased risk with the ADH, but nowhere near as great is with the BRCA.  At the same time, you should be followed by a program for high risk women.  I had ADH and then 17 years later was diagnosed with DCIS (and only DCIS), after a stereotactic core biopsy showed ADH again, and the excisional biopsy showed DCIS. Best of luck to you.

Sunnyat--About the ultrasound imaging, they do the entire breast, not just looking for discrete lumps.  That's the way ultrasound works.  So, they biopsied the ones that were seen on ultrasound and the other lumps weren't.  At the same time, if lumps are suspicious, they can biopsy the lump directly if it's palpable/felt on the surface.  It certainly helps if they can see it on imaging.  It is good that you are going for a second opinion.  You need to know if it's that you have lumpy breasts or these are lumps to be investigated.  Did you have an excisional biopsy of the area found to have ADH or was it a stereotactic core biopsy?  If they did the excisional biopsy, then they did what they could do to see if cancer is nearby.  The excisional biopsy is usually a large area. 

Sorry about your family situation.  Hopefully you will be able to get the BRCA testing, but also realize that if you don't have anyone in your immediate family (mother, grandmother), the family history may not be as strong as it seems. The geneticist will cover these issues with you, and you might feel better about your chances.  If you are BRCA positive, then you need to take some active steps.  If you are BRCA negative, you need the high risk surveillance and possibly hormonals (tamoxifen).  Best of luck.  Don't be scared of the ADH unless you need to be (i.e. brca positive). If Brown has a high risk surveillance program, and I were you, I'd jump on it. 

Sunnyat112, I agree with the posters above and want to add that while you are expressing disappointment in your current doctor, and I don't blame you/I agree, one thing I have learned the HARD way is that one must really be proactive when it comes to treatment and care. You cannot sit back, unfortunately, and depend upon the doctors to make the best decisions for you.  You must make the best decisions for you. Hopefully, the doctors have great skill and knowledge and experience to add to the mix.  But sometimes, they don't.   It sounds lke yours is lacking in some area, and you are being proactive to get the attention you need.

Frankly, not sure how to put this but re "second opinion": there are opinions, and then there are better opinions. In my experience, you DO need serious monitoring for ADH diagnosis.  Add in the specter of your family history. Which has not shown a first degree relative YET, but has shown enough to be of concern that there may be a genetic component regardless of BRCA. Most bcs you know are not BRCA, and often there is a genetic component while a family with history tests negative. That said, however, even if you do have some non-brca (or brca) family history, your father may not have inherited this gene as he is (so far) unscathed.  

But back to the ADH alone: your risk is elevated and you need to be monitored with something in addition to mammogram. Mammograms are notoriously unreliable, particularly with younger women/women with dense breasts (rating of 3 or 4). I will quote Dr Larry Norton of Memorial Sloan Kettering: mammography "at best" identifies 80% of breast cancers. That's 1 out of 5 it misses!!  (Watch his videos on the mskcc website for yourself.)  You should receive at least one sonogram a year in addition to your mammogram.  An MRI is even better.  But a sonogram, AT LEAST.

Even if you have no lumps....

In my 40s I had ADH and then, after benign/ADH palpable lump removed,  cancer grew in the contralateral breast undetected by mammogram, and not palpable.  It wasn't until luckily I was given an MRI (part of 'high risk' surveillance program that my original breast surgeon refused to put me in for a couple of years, arguing my risk was only "medium", not "high", and that my familial breast cancer, having not affected my mother, did not make  me 'high' risk...).  The cancerous lump, over 2 cm, was not palpable nor on a mammogram.  If not for the MRI, lord only knows how much longer it would have been before it was detected.  The sonogram saw what the MRI saw.

By all means, seek your second opinion at the cancer center.  Hopefully, the breast surgeon at that cancer center will have a better 'second' opinion than my original BS at a top national cancer center had....will not only biopsy lumps, but will see to it that you receive a sonogram if not an MRI to get a better look at your breasts.  Or at least will educate you fully about this aspect!  And then, have you back for regular imaging in addition to the mammogram...or recommend a more local radiology place for you to regularly get this done.  That is the standard of care that you must seek for yourself at a minimum.  Best wishes to you

Good recommendations, Jessica.  I go to that famous national cancer center you are referring to.  I had to ask for routine sonos as part of screening, and I've gotten them, and without any fight, but it wouldn't have been routine without my asking.  I will not be getting MRI's routinely.  Maybe I can push for that every few years.

ballet---I have the opposite situation:  I have yearly MRIs alternating with mammos by 6 months; but they won't give me US as a routine, unless something suspicious. I really would like to add US to my high risk surveillance schedule.

Anne

Sunnyat 12, I will keep you in my prayers. Please let us know what your status is when you can! ADH May not be something some worry about but I have such a long history of breast problems my dx of ADH seems to concern me at times.

thinking about you today Sunny!