Newly dx with ADH...what to do!!??

MooieVechter - I understand exactly what you are going through.  In January I was diagnoised with ALH, atypical lobular hyperlasia - in the lobes, where yours is in the ducts.  My BS sent me to the oncologist who described it as not  normal cells growing fast - he believes it is precancerous.  He suggested I take Tamoxifen for 5 years - he said most patients tolerate it well with few side effects.  When I discussed this with the breast surgeon she said I would have to have MRIs instead of mammograms each year, which show more things, which would have to be biopsied.  I am 49, strong family history of breast cancer and have had several biopsies on both breasts.  I had previously went to the Huntsman Cancer Center and they had figured my risk of getting breast cancer as 40% - tamoxifen would cut the risk.  I personally talked to two ladies that are on the drug and both of them have side effects and wished they could stop - but can't because they have cancer.  So along with my surgeon, and husband I decided to have preventative masetomies - that was May 6th.  It might sound drastic, but for me I did not want the side effects of Tamoxifen and I was making myself sick worrying all the time.  It's been six weeks and I feel great - and do not regret my decision.  I realize that this might be drastic and not for everyone - my surgeon was supportive but she would have supported the close monitoring and taking Tamoxifen too.  Talk to your surgeon and they should give you the pros and cons of all your options.  Sorry this is so long - but when I was going through the decision I hadn't found this site and couldn't find anyone that had the same condition.  There are a few of us out there. Good luck - I wish you the best.  Oh and I had nipple/skin sparing masectomies. 

Well, I have ADH and I'm "new" to it all myself. But I'm not taking tamoxifen. I'm premenstrual and my surgeon is utterly convinced it causes more harm than good in my own situation. I had my last surgical biopsy 5/4. I go back in September or October for a followup mammo (and I'm going to demand a u/s as well). After that .... he is telling me once a year normal screening and monthly bse's as I've been doing. I'm okay with that for now.

I also had a bunch of big fibrocysts in both breasts. After reading the alternative therapy section on this site, I've started taking iodoral, vitamin D3, and a B supplement. Kinda' hard to figure out what is a cyst and what isn't, LOL! I had originally thought the cysts were miraculously wiped out after 2 weeks on idoine, but I think I've got one left. It was deep and huge and I've noticed it's still giving me a little pain the last day or two.

Anyway, you might try checking out that section!

Age 47, btw. 

I'm taking 12.5 mg a day of iodine. But then again, I'm self dosing, may or may not be the smartest move I've made so far. No Tamox, just keep an eye on it. I'm adopted so who knows about my family history ... I know a little of the biological family and really have no desire to get any more medical info out of them, LOL! So, I'm winging it here. I don't think my overall risk factors are huge ... I'm slim, very active, one child, breastfed a little (does that count?), blah blah blah. I do smoke, don't drink. As far as coping .. I dunno really. I mean, how can I explain being a devout Christian and a bit of a fatalist on the side? I'm just trying to learn all I can to lower my risks, as even the ADH does put us in a bit of a higher risk category. The rest ... I leave in God's hands. He hasn't dropped me yet!

Edited to say I've been blessed with the medical professionals I've came in contact with during this time. My NP was really on the ball when I went sprinting off to the office when I found a lump. The imaging center people were angelic! I had so many cysts, they had to call in one of the admins to do the u/s as the poor tech went all googly-eyed. Course, since this admin (or whoever) was also a doctor, I was told all my results right there. She didn't want to scare the living daylights out of me, so explained the mammo and u/s and told me I would be seeing more people for biopsies. The women's center who did the biopsies was amazing. I got to see my samples and everything from both of them. It was like some cheer rally around my left breast. The surgeon I had to see for the last one was the same way. Just real nonchalant and comforting. "No biggie, just gonna cut into you and make sure you're A-OK! At the worst, you might need some additional treatment." They make the patients feel so pampered and special, it's hard to spaz out. 

Mooie - I understand what you are going through.  I am 51 and was dx in Feb with ADH after stereotactic biopsy. Had a cyst close to chest wall and needle bio said b-9. I do have a strong family history with bc but no ovarian.  BS said with my dx and family history that I might want to really think about Tamox due to it reducing my risk of bc by 86% with ADH.  I chose to wait and just go for high risk screening with MRI's and mammograms for now.  Of course I can always change my mind. I too have thought about preventative BMX.  Still researching that one. But right now I will do high risk management. What has helped me is reading these posts, there are alot of ladies on this board that are so knowledgable and they do come to the aid of us newbies.

Hi Lisa,

I was dxd with ADH in March of '09.  Stereo, then surgical biopsies showed ADH but they got clear margins.  Was sent to oncologist, who was very adamant about my taking Tamoxifen.  He reviewed my risk factors and basically scared the heck out of me, saying that I would have to have high risk surveillance (every 3 months) and take Tamox.  The thought of that scenario just went against all of my instincts.  I came to these boards and began reading about my options.  I spoke with LOTS of people--from medical professionals to relatives to many women here (like anne-awb) who helped me through that early period.  God bless them....I don't know what I would have done if I hadn't found this site.

My reading and research brought me to the conclusion that if I ever wanted peace of mind I had to remove the threat as much as possible.  As a person prone to anxiety attacks and worry, I knew I didn't want to live with the high risk status if there was another option.  I eventually decided to have prophylactic bilateral mastectomies, with immediate DIEP reconstruction.   For me, this was the best decision I could have made.  I had the procedure in February, with a follow up second procedure in May (this surgery is usually done in 2 stages).  I feel great, I am very happy with my reconstruction, and I feel I have done the most I can to reduce future risk.

After several visits with the oncologist, and when I told him what I was planning, he said to me:  When a bc or atypical dx is made, women usually react one of two ways.  There are some women that will do anything to save their breasts, and there are some women who just want them gone because they are always haunted by what might be 'going on' there.  I definitely fell into the second category.  I have a lot of admiration for women who choose the monitoring.  It's not easy.  It's a lot of stress with each test, and you have to have a lot of inner strength to deal with it.

PBM or no PMB--it's a very personal decision.  It wasn't 'hard' for me to decide and once I did I felt peace about it so I knew it was the right thing for me.  And I don't 'miss' my breasts or regret the surgery.   I have new breasts that I love and are not a threat to me, and I feel very relieved and grateful that I was able to go ahead with the surgery.

Whatever you decide to do, you have time to research all of your options.  And you have this great site with women who will help you as much as possible.  The best advice I can give you is to follow your gut--your instincts--go with what you think is right.  You'll be fine!

Kelly, lots of people give lots of opinions when the word 'mastectomy' is mentioned.  I know it's appreciated, but they are not the ones facing the decision.  If you feel that's what you want to do, just forge ahead and do what is right for you.  I have to admit a couple of people looked at me like I'd lost my mind, but it didn't matter to me because I knew what I wanted to do.  Best wishes to you in whatever you decide.  Just remember it's YOUR decision.

HellofromCT, I am with Kelly.  My first instinct was to take them off.  They have served their purpose and (i heard this somewhere) my boobs are trying to kill me.  I decided that I will do mri and mammogram for now.  I had 2nd mammo in Jan due to abnormal one in Dec.  August 3rd I go in for the MRI and then I will discuss other options. My main concern is the surgery and how long it is, especially with diep. Being under that long is really scary.  What was your experience? And who did your surgery?  When I tell people what I'm thinking about doing most are understanding and it doesnt freak them out, of course they know my family history, others are saying "thats too drastic" but they don't have the family histroy that I do. I need to do what is best for me and when I make that decision, only God knows.  For now it is research, research, research and talking to y'all.  Mooie, let us know what onc says. I'll be praying.   

bebe, I was under for about 7 hours.  There were 3 doctors working on me--one doing the mast and two preparing the diep flaps.  For stage 2 I was under about 3 hours I think.  I don't think I had any lasting ill effects from the anesthesia.  I had my surgery done by Frank DellaCrose at the Center for Restorative Breast Surgery in New Orleans.  I would do it again in a heartbeat.  No regrets at all.  Here is the link to the Center's site:  www.breastcenter.com