Focal Atypical Duct Hyperplasia

Well I am sorry for allyou are going through.  I did have both of my breasts removed.  I had cancer on one side and the other side all tests came back clear.  After surgery pathology showed all typss of pre-cancer.  Atypical hyperplastia, epocrine metaplasiaa... all the stuff the cancer side started out with.  So I am glad and have no regret that they are bot gone.  BUT I will still be put on tamoxifen as I am pre-menopausal.  So not sure a mastectomy would definately be the answer but it is certainly an option.  I removed both for anxiety.  I am 42 with 2 children and just wanted to fight the fight for my life.  I am almost done with 16 weeks of chemo, and then I will be having reconstructive surgery. Tissue expanders removed implants in scar revision in March.

Good luck to you on your decision you have come to a great, supportive, place.

Alicia

golden-----the ADH itself is not cancer, but it does put you at higher risk of invasive bc in the future. The surgery is to make sure nothing more serious is in there along with the ADH (like DCIS, LCIS, or invasive bc). The general recommendation is usually for yearly mammos and twice yearly breast exams, with the addition of tamoxifen if there are other significant risk factors involved, such as a strong family history of bc. It's a good idea to talk over the risks and benefits of preventative meds with your doctor for your individual situation.

Anne

I had a lumpectomy to have the ADH taken out...

I am assuming that the oncologist will discuss with you the benefits of Tamoxifen and give you some statitics to help you make the decision. I have LCIS and ADH plus a bunch of other junk. Sometimes when this stuff shows up in a needle biopsy they want to do an excisional biopsy to ensure that all is well.

Wishing you the best and try not to drive yourself crazy, you will know more after seeing the oncologist. I highly recommend anti anxiety meds while in the holding pattern (:

Hugs,

Linda

Anne, thanks!  i'M SORRY TO HAVE BEEN SUCH A PAIN IN THE NECK, ASKING THE SAME QUESTION 6 DIFFERENT WAYS lol!  tHANKS AGAIN :-)

Hi All, I am very glad that I have found this site. I too have been diagnosed with ADH. I went and saw two oncologists and they both recommended that I go on Tamoxifen for 5 years because I am at high risk for breast cancer. I decided to start on the Tamoxifen; however, I've only been on it a little over a week and I am feeling very sick from it, nauseated, headaches every day, and increased hot flashes/night sweats. I feel like my quality of life has drastically changed. I am not feeling well at all. I am going to continue the drug a little longer to see if these side effects go away. If not, I believe I will discontinue the drug. I have been extremely stressed and upset about the entire thing which I am sure is not benefiting me either.

Gee... here I am again... almost seven years ago my ordeal started right about now and finally on 9/5/03 I was diagnosed with BC... fast forward to this year's result, after mammogram, an ultra sound and a surgeon that was an a$$, I had my double biopsy on my good breast performed by a radiologist in his office.

Biopsy no. 1 - fibrocystic changes including stromal fibrosis sclerosing adenosis, duct ectasia and cystic apocrine metaplasia;

Biopsy no. 2 - all of the above and focal atypical duct hyperplasia.

Now, this is on my "healthy" breast, and almost seven years after the first time around.

Tomorrow, I am seeing a different surgeon (the a$$'s partner) which I connected on the phone much better.  You could think that I was imagine things if my husband wasn't present and counts as a witness to the stupidity that came out of his mouth, specially to someone that has had BC.

Anxiety levels are running very high as the Dr. on the phone spoke about going back into my left breast and doing further testing, just like I read here regarding what some of the ladies had done.

But to continue to live like this, every year coming along and expecting to pass with flying colors and this time around failing... not fun.  I don't want to do hormonal treatment because I hate pills (on the other hand, I see the low side effects here...and the high); I am 43 and after I finish my 4 rounds of chemo, I went menopausal, and two months later my period came back but was never the same.  On the other hand, today I woke up thinking that if I remove my breast may be I have a better chance to never have results like this... than again, the "CANCER door" was opened seven years ago and it will never be shut! 

Have been given some names for the second opinion after tomorrow's consultation which I expect to follow up on those.

I also had the BCRA1 and 2 tests done about 5 years ago without having any positive results. 

I really don't know where to turn, which way to go...yet!

Finally, I have no family history of cancer or BC... I am the history that started at age 36!

Today I met w/ the new surgeon and I loved him; good side manners go such a long way!

He suggested a biopsy w/ needle localization which is already scheduled for next week... YES!!!

We spoke more about if the results are B9, which he would suggest for me to than start a hormonal treatment; I also had  the pleasure of speaking w/ my old oncologist from NJ and he stated that he would not recommend that due to my triple negative... which I am fine with it... do not want more pills in my body... have enough as is.

So overall, a better day, wherein in 15 days we should know if I am celebrating the upcoming 7 years of being cancer free... or not.

Well, I think the state of breast cancer prediction is in a pretty primative state.  I have LCIS, ALH, sclerosing adenoma, radial scar.  I have been given estimates of my breast cancer risk as low (or closer to) as 10% (!lower than the average woman -and this by a NCI certified center!), to in a risk calculator that has NOT been compared to populations, to up to 90% (without tamoxifen.)

I do NOT take responsibility for a heart attack if you get extremely high values on this Dr. Hall's risk calculator - it has NOT been compared to the appropriate populations. http://www.halls.md/breast/risk.htm

The Gail model, in the study below, does a GREAT job at predicting breast cancer  FOR A POPULATION.  It does a LOUSY job at predicting breast cancer FOR AN INDIVIDUAL.

You may want to look at this editorial in a medical journal.  They randomly selected one woman from a group of women WITH breast cancer, and compared her Gail model score to that of a randomly selected woman WITHOUT breast cancer.  If the model worked perfectly, the woman with breast cancer would always have a higher score than the woman without breast cancer.  The Gail model and the Italian model were far from perfect.

In other words, for 59% of the randomly se- lected pairs of women, the risk estimated for the woman who was diagnosed with breast cancer was higher than the risk estimated for the woman who was not. Unfortunately, for 41% of the pairs of women, the woman with breast cancer received a lower risk estimate than her cancer-free counterpart. Thus, for any given woman, the two models were better at prediction than a coin toss—but not by much.

http://jnci.oxfordjournals.org/cgi/reprint/98/23/1673.pdf  (emphasis mine)

These models assume that the factors are additive.  That may or may not be true. In many cases, we don't know if your risks are additive.  That means if you both started menstruating early AND have ADH, will your risk be higher because you add the risk of each risk factor together?  Some breast cancer risk factors seem to NOT be additive according to some authors, such as alcohol intake + some other risk factors.

Jen, Karen hasn't posted since June 2010.

I hope your biopsy comes back with nothing worse than the ADH.

Although the terms are sometimes used interchangeably, more properly you have had an excisional biopsy. A lumpectomy is an operation to remove a known cancer with clean margins. The biopsy is to explore whether there is anything more than what is known from the needle biopsy and clean margins are not the goal.

Here is an ADH Club thread with current activity where you can get some support:

http://community.breastcancer.org/topic_post?forum_id=47&id=773927&page=1