Diagnosed with ADH in my other breast too

Bumped up thread PBMX for ALH or ADH - there are some of us with your diagnosis.

Hello Let1968,

I was diagnosed with ALH in 1 breast (so far) and am waiting to meet with BS for consult and lumpectomy appt.  I am already starting to consider the prohylactic mastecomy also.  I have a feeling that is what they may suggest since I too lost a sister to BC.

Actually, my understanding is that while being pregnant is a binary condition (you either are or you aren't), it's not comparable to ADH/DCIS, which are diagnosable along a continuum.  From what I have read, the dx may not be all that clear cut and is often rather subjective on the part of the pathologist, having to do with assessment of both the degree of abnormality of the cells being looked at, as well as the size of the lesion.  To give you an example, in my case, I had my needle biopsy slides analyzed no less than 3 times (3 separate hospitals):  first came back DCIS, second came back "borderline" ADH/DCIS, and the third just ADH.  So, you see, it is not so clear cut.  All my doctors assured me that the ADH/DCIS distinction ultimately made no difference in my case, since the treatment would be the same (excision.)  Results of the excisional biopsy, btw, were completely negative.

As for what to tell the children, my son is much older (23) so that is obviously a totally different situation.  However, in the case of your 5 year old, I would think  you could explain that the doctor has found some kind of "boo boo" (or whatever term you like) that will require it to be taken out and that you will have a little scar, and it will hurt for a few days, but you will be ok.  The 10 & 14 year old, I think, can grasp some more of the details-- you can explain about abnormal cells. I think the kids will key off your own level of anxiety about this, so I would try to to compose myself as best as possible and explain calmly.  I know that although my son was much older, I reserved my panic and hysteria for my husband and close friends.

I ended up getting 3 opinions since the initial mammography center I used was associated with one hospital, the breast surgeon I decided to use was associated with another, and then the plastic surgeon I used was associated with yet a third. Personally, with a dx like ADH which can be inconclusive sometimes, I think another opinion can never hurt.

I was diagnosed earlier in Nov. with ADH. I have a large tumor that can be felt and my bs has put me in the high risk category since the edges of my tumor are irregular, but core needle biopsy said ADH. Up till the other day, I did not say anything to my kids-aged 14 & 8(going on 9). I am scheduled for a lumptectomy on Dec. 18- they called me this morning and moved it up to the 18th from Dec. 27. My bs is trying to get this done asap-which doesn't give me the warm fuzzies. My oldest knows that there is a chance that I have breast cancer, but my youngest knows that I need a small operation. Both my kids understand operations since they have both have had to have surgery before. My advice for telling kids is to keep it simple, don't scare them, and to let them know you'll be okay, but will need their help for a few days. My youngest is great at making ice packs and bringing me snacks.

Good luck and let's all wish for b9 path reports. Hugs

Hi,

I'm soo sorry to hear your going through this.  I understand the stress all too well.  Back in Feb, 2010 I went through a rollar coaster ride that resulted in cancer diagnois and removal of left breast.   I tried the tamoxifen for 9 months.  Horrible side effects and with the oncologists permission stopped the drug. Its such a difficult decision to take it or not.  Feb 2012 I had reconstruction (TRAM).  I was told the chances of having problems with the other breast was low...very low risk.  Fast forward to today and I have ADH in the right breast.  They can't confirm cancer or not until they take a bigger sample in surgery. The doctor told me that what ADH  means is that it "can" turn cancerous or it can also be an indicator there is cancer near by.   I am having my right breast removed in Jan.  If I had a crystal ball I would have removed both breasts as soon as I heard cancer.  The bottom line is when you talk to doctors they give you the risk factors..percentage of this and percentage of that..but cancer doesn't always follow the rules so for me I'm not taking any changes with ADH.  There is no right or wrong answer as to what to do but for me if I would have just removed both breasts from the beginning i wouldn't be going through this now.  I have a question for you ladies if anyone is still on...?  The doctor took me off of work due to the stress.  I'll be off for about 4 weeks before the surgery. I'm not handling it well this time      Did anyone else have to take time off for emotional reasons??  Feeling like  a complete wimp. 

Dr's office just called.  Path is back and shows they did indeed get clear margins which is good.  I am even more confused though.  Path from the lumpectomies showed ADH in both breasts.  The biopsies had shown ALH.   The surgeon was not available, and I have an appointment on the 7th to go over it.  They just wanted me to know there were no malignancies.  (great news!!!!)

Do I have ALH and ADH in both breasts?  I asked the gal on the phone to double check, and she said yes, the biopsies were confirmed ALH.  The lumpectomies were confirmed ADH.  I am happy for b9, but even more confused and concerned.

Any insight at all?  please help.

Let1968 my heart goes out to you. Such a hard decision to make. When all I had was single breast ADH diagnosis, the thought of prophylactic mastectomy was abhorrent to me. It wasn't suggested - but I do remember that BRCA testing came up with my gyno and I was afraid to test be I feared needing to act In the event of a positive result!(since IDC I've tested neg gor BRCA)

Of course, once I was diagnosed with IDC, the fact that I had ADH in the other breast led me to make the bilateral mast decision in less than 72 hours. !!(prophylactic motivation, not for my cancer)the ADH, and the fact that the IDC was not visible on mammogram led me to this decision pretty quickly, along with my insecure feeling with regard to insurance, finances, job for long term future.

My decision I know was right for me but it wasn't made easily until after I had cancer diagnosis!

I totally agree with BDavis: yearly MRIs, u/s, and mammograms. No technology is perfect. No doctor/radiologist/pathologist/surgeon reading things is  either. Maybe let your ADH/ADL slides get read by another top center, depending on where you are etc.  If you are at a top center already like MD Anderson you may feel very confident in what they tell you.  ADH is just a grade away from DCIS, my understanding.  Would another place call it ADH? Maybe it's more benign than that or less. Or maybe they concur.

One thing my oncologist reminded me about is kind of obvious, but I'll say it. Mammograms/the above screening tests are not preventative. They just, HOPEFULLY, catch cancer at an early, curable state. 

This was my situation exactly: needle biopsy first dx'ed as DCIS. I had 2 additional pathology analyses (from 2separate hospitals)-- one said borderline ADH/DCIS, the other said ADH only... So you can see it is not clear cut. When the lumpectomy was performed, iit revealed nothing. Everything was removed during the needle biopsy. I nearly drove my BS and Onc crazy asking them if the treatment/prognosis would be any different for any one of these 3 dx's and both of them said no. My onc did offer me tamoxifen, but ultimately agreed with me that the 4% risk reduction it would offer was not worth the risk of SE's, especially since I have already had endometrial issues and cataracts. All my doctors said radiation was not indicated and when I brought up the potential possibility of a PBMX, my BS flat out said I was overreacting and that it was not appropriate.

I would encourage you to be persistent if you want to get a second opinion (a perfectly reasonable request.). If there is one thing I have learned through this whole miserable process, it is that you must advocate for yourself! It is completely unacceptable that your doctors will not return your calls.

Best of luck & don't give up!