ADH

donna-angel-123

Hi everyone

I am new to this forum.  A little history-about 3 years ago I had bloody discharge coming from my right breast,  no doubt I was scared so I went through all the tests, mammogram which was negative, ultrasound negative and then MRI which showed  a Suspicious area.  Had MRI guided biopsy which came back benign but with ADH at that time I didn't know what the heck that meant just that I was benign.  Had surgery which they removed the area and it was tested and benign.  so my scar healed and I went on with life.  I had mammograms every year which have been negative.

  just last week I went and had my MRI follow up and wouldn't you know it in the same breast another area under the nipple was found to be ADH.  I go for my MRI guided biopsy on monday, I have my appointment for my surgeon already.  So now I have been on the computer looking up ADH like crazy because it has me scared, worried and I don't know what to do.  Am I going to keep have to go through this every year or more?  So my question to you guys, I have been reading all the blogs  what should I do?  do I get on tamoxifen for 5years if so do I loose my hair?  do I have a double mastectomy just to remove the chances?  what are your thoughts?  

p.s.  thanks for listening,  my husband has been great through all of this.  When I found out that I had this again I was crying for 2 days. 

DocBabs

Donna-angel-123, like you my journey started off with a similar diagnosis , ALH, and like you was told that it was benign. After a lumpectomy I was once again told that everything was negative only to find out while reading my path report that LCIS was found. I immediately contacted an oncologist and she repeatedly assured me that I did not have cancer but but now I was to be considered a high risk patient and would be monitored as such. Part of the "treatment" would be the inclusion of Tamoxifin but since I had a history of having had a pulmonary embolism a very long time ago , she decided not to take the chance of possibly another one. If you haven't already done so , you should make an appointment with an oncologist just to have someone keep tabs on you. She/ he may want you on Tamoxifin. As far as I can tell , people on this med don't generally lose their hair but rather there may be some thinning of the hair. Then again , this does not happen in every person. Also, you've got to remember that MRI's are very sensitive so they are going to find a lot of" stuff" in your breasts that doctors won't be sure of just what it it is , so there's a good chance of multiple biopsies being performed.At some point some women just say enough and opt for more invasive surgery. This is another reason why you need an oncologist to talk with.

Lastly, I'm a big believer in crying . In fact I like to yell a lot to while I'm crying. Gets out all those bad feelings and gets you ready to face whatever is ahead of you. Take it one step at a time and don't spend your days on the computer just yet. Plenty of time later on.



Barbara

2tails

Donna-angel-123, I am sorry you are going through this. I am also in the ADH club & I also have LCIS. My journey is just beginning but I will share my thoughts and opinions. ADH is not cancer, but having ADH increases your risk of developing cancer. Unfortunately there is no way to predict which patients will go on to develope cancer hence why close monitoring is so important. The advice of getting an oncologist on your medical team is sound. He or she may or may not recommend Tamoxifen for you and the ultimate decision of whether or not to take Tamoxifen is yours. There is no right or wrong answer, it is your body and your choice. You have to make the decision of what feels right for you and your oncologist can help you make that decision. Ask lots of questions. If they tell you something you don't understand, make them explain it in a way you can understand. As I have said, my journey is just beginning and I have not decided whether or not I want to take Tamoxifen. I am not sure the side effects are worth it...but that is me and my opinion for my situation. You do have time to think about it and not something you need to decide right know.

Some women do decide to get PBM's simply because they cannot deal with the stress and waiting and the feeling like cancer is just one step away from reality. I am comfortable with my diagnosis and I am ok with close monitoring for now. That opinion may change if I find myself over the years having to have multiple biopsies every time I go for a mammogram. But again, that is my decision, my choice and my opinion which may or may not be right for you.

I am sorry you are going through this. I am sending you positive thoughts and prayers for good results. Know that we are all thinking of you! Please keep us posted.

ballet12

Hi Donna, I'm a little confused by your posting.  As I understand it, you had a diagnosis of ADH made three years ago  Were you told that you now have ADH again, based solely on an MRI?  I don't think that's possible.  That's why they have to do the MRI-guided biopsy.  You may not even have ADH again (hopefully not).  Of course, if you do, you will need the surgical excisional biopsy.  I had ADH diagnosed twice.  The first time was 18 years ago, via surgical biopsy, and I didn't undergo any special surveillance, other than yearly mammos and sonos, as well as twice yearly meetings with my surgeon, which dwindled to once per year.  I had two other intervening surgical biopsies, which were completely benign, and then last year (17 years later!), they found ADH on a stereotactic core biopsy.  The follow-up excisional biopsy found DCIS (a lot of it).  I kind of do regret not being followed by a surgical oncologist as a high-risk patient.  I think that the DCIS was missed when it was smaller, but that was because the mammos weren't always studied with a fine tooth comb. 

So, continue with the surveillance.  Yes, you might have multiple biopsies, but as was stated earlier, prophylactic mastectomy is a big step.  Hopefully this biopsy is benign or only ADH. Let us know.

Moderators

Here is a bit on ADH. Nothing really that hasn't been mentioned, but thought it still may be helpful. 

http://www.breastcancer.org/risk/factors/breast_changes

Best, 
The Mods