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Anyone dealing with Atypical Ductal Hyperplasia (ADH)?

Breast Cancer | Last Active: Sep 11 9:29pm | Replies (227)

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@khauff

First off thank you everyone for your posts as they really do help.. Cindylb question for you? You had ALH 5 years and 2 years after that you had invasive breast correct? Did they have you on any medication after the ADH such as tomoxafin or arimidex? I can't take tomoxafin because I had a blood clot after the lumpectomy so they won't put me on that and I had way to many side affects from the arimidex so I am not on anything. I have a couple woman in my family that have had breast cancer and my paternal grandmother died from it (granted when she had they didn't have as much technology or advanced chemotherapy as they do now). According to my doctor it is now if I get breast cancer it is when I get it. I do mammos/Breast MRIs alternating every 6 months. according the doctors I have very extreme dense breasts. My husbands side of the family all of BRCA1 jean so concerned about my daughter as with that on my husbands side and now me having this doctor said she needs to start having mammos at age 25. Thank you for your reply.

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Replies to "First off thank you everyone for your posts as they really do help.. Cindylb question for..."

khauff.........I had ALH for 2 years which then turned out to be invasive lobular. It has been a total of 5 years now since I first discovered I had ALH and 3 years since I had treatment for the invasive lobular carcinoma/cancer. So, it's been a total of five years. I am now 61, so this all started when I was 56 years old, which is pretty typical. Because it was lobular cancer I chose to have a bi lateral mastectomy. The first ALH was in the left the invasive in the right breast. It looked like a slippery slope with both breasts involved so I chose the mastectomies. With ductal it's not so common for both breasts to be involved so a lumpectomy and monitoring would be very reasonable. I am quite content with my decision to remove both breasts and reduce my risk as substantially as possible but again.......lobular is tricky like that. I tried tamoxifen with ALH and two AI's following surgery. All of them made me quite ill and so I had to opt out of that treatment. I am very sensitive to any drugs so that is another reason I went to the mastectomies. Due to that treatment I have very low risk of recurrence (even without the AI's - about 8%) but I guess you never start worrying. I'm still monitored every 6 months. I have NO history of breast cancer in my family - on either side so I was surprised BUT I had a long history of dense breasts, cysts, and benign tumors. Also several other risk factors. I suppose I will never feel like I'm out of the woods on this and I probably won't ever be free of the testing and monitoring but I'm trying to stay positive, be proactive with diet and supplements and just carry on. I was so lucky (as you are) to get on this quickly and do all you can to prevent an invasive cancer and cancer that spreads to the lymph nodes if possible. I'm hoping I can cheer you up during a time when I'm sure you're very worried. There are women on the Mayo Support Site here who are doing quite well and fighting the 'good fight' with every stage of cancer. They are better than ever at treating breast cancer. You'll know so much more after your surgery. The pathology will give you and your doctors a lot more information and that will help you know how to move forward. Don't get me wrong.......breast cancer isn't all rainbows and sunshine and stuff but it can be treated and you are not alone. Keep me and all of us posted. All the women on this site are very supportive and have great advice. p.s. I have a daughter too and she recently found a breast lump. It was terrible for me BUT it was an inflamed gland and I'm hopeful that she won't have to go through this or that they'll have figured out incredible treatments by the time she might have to face this. My daughter just had her first mammogram and ultrasound at age 30 and it's all clear so far. Encourage your daughter to be proactive and do the recommended screenings. The key is to find it as early as possible and smack the hell out of it. Ha ha. Hugs!!!!