Anyone dealing with Atypical Ductal Hyperplasia (ADH)?

First let me say I am sorry for what you are having to deal with. These are very difficult decisions to make no matter how much information you have. But, get a second, third even fourth opinion if it will help you make the decisions. You have to do what is best for you.

Hi Char, I have not been exactly where you are but a close situation at the beginning of my journey. Like you I was having a hard time concentrating and taking care of business when my mind was in a loop of worry and decision making. This is a very difficult thing.
I have learned to give myself time to worry once or twice a day for 30 minutes, then if I start obsessing at a different time, I can say nope, I will think about this during its time, this time is for something else.
I also would applaud you for what seems like a very rational and well thought out decision of going with lumpectomies then if cancer is found move ahead with mastectomies.
I hope you can likewise think about endocrine therapy in this way. Keep an open mind and get as informed as possible about why exactly the doctors are recommending it for you. Because you are younger than most of the people who have to make these decisions, you have more to consider about quality of life. You also have more years to live with the decisions you make or revise them as necessary. I am quite close to your age, just a youngster.
Do you have a list of questions for your doctor, about surgery? How about in reference to endocrine therapy?

Hello. I have been dealing with trying to understand ADH. Mammo in Dec showed distortion so had MRI which led to sterotactic biopsies on 2 areas of right breast. 1 biopsy came back with a radial scar. They performed a lumpectomy to remove and found 1 foci of ADH. Surgeon assured me it was benign yet sent me to an oncologist to learn about cancer prevention. Oncologist while very nice seems a bit socially awkward and said we needed to do bloodwork to see if I had been through menopause to determine med path...I had a partial hysterectomy 12 yrs ago. Still have pain in breast where biopsies were performed, I am told it's normal. Ended up at 2nd surgical opinion because I was not understanding why not just have a masectomy instead of taking meds that seem to cause extreme side effects and surgery may reduce the risk more. 2nd surgeon backed up 1st and said to get info from oncologist. Went back to oncologist last week and she suggested trying aromatase inhibitors for 30 days and basically walked me out of room after sending in rx. Shouldn't they monitor or get base line of bone density, vitamin d, calcium,cholesterol levels? I have no breast cancer in family, have gone to a plant based diet( already dropped 14 lbs),exercise 6-7 days a week-aerobic with alternating weight training. I feel lost, confused, guilty for feeling this way. I am terrified of starting these meds and scared I will get cancer if I don't. Sorry this is so long.

Hi @leesal123, I can imagine you're nervous about starting aromatase inhibitors especially since you haven't had a chance to discuss them thoroughly with your oncologist. You are asking all the right questions and deserve to get answers or at least to have a discussion.

I'm bringing @char820 @khauff @monical into the discussion to share their experiences.

Lee, are you able to schedule a new appointment with your oncologist to discuss your concerns and get answers to your questions about the pros and cons of taking aromatase inhibitors preventatively?

Hello. I have been dealing with trying to understand ADH. Mammo in Dec showed distortion so had MRI which led to sterotactic biopsies on 2 areas of right breast. 1 biopsy came back with a radial scar. They performed a lumpectomy to remove and found 1 foci of ADH. Surgeon assured me it was benign yet sent me to an oncologist to learn about cancer prevention. Oncologist while very nice seems a bit socially awkward and said we needed to do bloodwork to see if I had been through menopause to determine med path...I had a partial hysterectomy 12 yrs ago. Still have pain in breast where biopsies were performed, I am told it's normal. Ended up at 2nd surgical opinion because I was not understanding why not just have a masectomy instead of taking meds that seem to cause extreme side effects and surgery may reduce the risk more. 2nd surgeon backed up 1st and said to get info from oncologist. Went back to oncologist last week and she suggested trying aromatase inhibitors for 30 days and basically walked me out of room after sending in rx. Shouldn't they monitor or get base line of bone density, vitamin d, calcium,cholesterol levels? I have no breast cancer in family, have gone to a plant based diet( already dropped 14 lbs),exercise 6-7 days a week-aerobic with alternating weight training. I feel lost, confused, guilty for feeling this way. I am terrified of starting these meds and scared I will get cancer if I don't. Sorry this is so long.

@leesal123 I am right there with you. I had BIL arak lumpectomies last week and ADH in one area only. The recommendation is for tamoxifen since I’m
Not yet in menopause. I am very skeptical about taking this, and I best myself up everyday as a result.

It’s interesting that our “treatment” is preventative with big gun medications or mastectomies, but at the same time being dismissed as you mentioned about the oncologist. It’s definitely a mixed message.
In addition to this group I have hounded an ADH FB group and it’s a nice group of people who have having same struggles, but can also share their decisions one way or the other.

I hope you can find some peace and comfort with this what if breast disease, but know you are not alone. (((Hugs)))

Char

Hi @colleenyoung. Thank you for your response. I actually started the anastrozole Sunday night. Monday I woke up with red, irritated /dry eyes, and chills. By 10 a.m. I could not get enough to drink so needless to say I was in the bathroom a lot. My hands were pruny, and my sinuses were dried out, by the evening my hip and lower back had started to ache. My husband took one look at me and said I was dehydrated( and I had increased my fluid intake!) I called the pharmacist who told me to contact my doctor which I did Tuesday morning. I did not take another pill and by Tuesday night I started to feel better. Thursday morning I finally got a call back from the doctor's office and was told that my side effects happen in less than 5% of people and it was really unusual that it happened all at once. I was made to feel like an idiot and that I was crazy. They said I could continue to take or not just let them know. If I do start again I will try again this Sunday, I have to do some errands tomorrow and need to be able to do them. Before I had started taking I had also asked about a baseline bone density test and taking Vitamin D and they said not necessary. I feel foolish. My surgeon sent me to this oncologist, not sure if I need to let them know what is going on and possibly go elsewhere. Do AIs really help decrease BC chances with ADH? Thank you in advance.

Hi @colleenyoung. Thank you for your response. I actually started the anastrozole Sunday night. Monday I woke up with red, irritated /dry eyes, and chills. By 10 a.m. I could not get enough to drink so needless to say I was in the bathroom a lot. My hands were pruny, and my sinuses were dried out, by the evening my hip and lower back had started to ache. My husband took one look at me and said I was dehydrated( and I had increased my fluid intake!) I called the pharmacist who told me to contact my doctor which I did Tuesday morning. I did not take another pill and by Tuesday night I started to feel better. Thursday morning I finally got a call back from the doctor's office and was told that my side effects happen in less than 5% of people and it was really unusual that it happened all at once. I was made to feel like an idiot and that I was crazy. They said I could continue to take or not just let them know. If I do start again I will try again this Sunday, I have to do some errands tomorrow and need to be able to do them. Before I had started taking I had also asked about a baseline bone density test and taking Vitamin D and they said not necessary. I feel foolish. My surgeon sent me to this oncologist, not sure if I need to let them know what is going on and possibly go elsewhere. Do AIs really help decrease BC chances with ADH? Thank you in advance.