Anyone dealing with Atypical Ductal Hyperplasia (ADH)?

Posted by EJ @elsajohnson, Aug 7, 2018

I am sorry if this is not the right forum. I know ADH is not cancer and this is a breast cancer forum, but I can't find another forum that may be more relevant.

I am wondering if there is anyone who is dealing with ADH or has been diagnosed with ADH that can share their experience. I was diagnosed a month ago. While I am relieved that I don't have cancer, I am confused with the radiology report that shows BI-RAD6 – surgical removal is recommended. I have seen a breast oncology surgeon and I don't think she took me seriously because I don't have cancer. It almost feels like I wasted her time seeing her because I don't have cancer. If ADH is no big deal, why BI-RAD 6 (which i understand is for biopsy proven malignancy). I also read up about ADH online and understand that with ADH, my risk for breast cancer is 4x. Should I not worry about it and just do annual check? Should i see another breast surgeon? Should I see an oncologist? Do I need genetic testing to better understand my risk? I feel like an impostor for even posting this on a breast cancer forum but I am genuinely confused and concerned. Any help will be greatly appreciated.

Interested in more discussions like this? Go to the Breast Cancer group.

@char820

I wanted to also add that taking the estrogen blockers is also a difficult decision. Since I’m opting for the lumpectomies, assuming nothing is found then that is the strong recommendation. Again, all of these very large treatments with a relatively dismissed diagnosis since it is not cancer. Such a difficult place to be in….

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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.

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@char820

Hello,
So I came here searching for some type of support group, feedback or anything to help with the “in between” feeling of ADH/FEA and in the past micro calcifications. I think I found what I was looking for. This forum helps with the feelings of isolation, confusions and loneliness of ADH and the difficult decisions you have to make for a diagnosis that is not cancer. My story:

5 years ago I had a stereotactic biopsy on the right. Showed micro calcifications. Breast specialist recommended Tamixifen x5 years, I refused. At the time I was 47. Mom has had breast cancer 3 times and two of her sisters twice. My genetics are negative.

Fast forward: January 2022 I found a lump in right breast, same area. Biopsy showed fat necrosis – thank goodness right? Well an mri was done bc of my high risk and the results were discordant on the right and requires lumpectomy and on the left biopsy done on a suspicious area and found ADH/FEA which also needs to be excised.
It was recommended that I have the bilateral mastectomy with reconstruction as I am very high risk given family members. Specifically mom and precious micro calcifications and the discordant findings on mri.
I opted for bilateral lumpectomy for now since genetics came back negative. If there ia a malignancy of any kind found after lumpectomies, I will then move forward with mastectomies.
I find it so difficult to make decisions based on this very vague diagnosis. At one point you’re told it could or couldn’t turn to cancer, but at the same time recommending removing your breasts. To me that is incredibly conflicting and has/is creating SO much stress for me.
Any feedback is more than welcomed. I’m having trouble concentrating and living a normal life with minimal stress. My suregery I scheduled for 05/09/22.

Thank you all so much
Char

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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?

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@khauff

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.

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Hi, thank you. Yes this my second opinion. I feel like it’s going to be the same no matter where I go, nothing will ease the difficulty.

Thanks so much!

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@auntieoakley

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?

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Hi Chris,

Thank you for your response. I do like your idea to appoint a specific time to allow myself to worry. I does help with keeping the focus and not allowing it to consume your entire day. (This can happen very easily as you know)

I did address my surgeon with a list of questions which were answered well. I feel well-informed, but still feel the heavy stress. Past few days have been better I will say. 6 days to go 🙂

Thank you
Char

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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.

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@leesal123

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.

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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?

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@colleenyoung

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?

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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.

REPLY
@leesal123

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.

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@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

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@char820

@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

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@char820 Thank you for your response. I have felt so isolated. The medication has me concerned since it seems to be one size fits all, but when I ask about it I am simply given the stats from online, which I could find myself. I will look for your FB group.

Best,
Leesal123

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@leesal123

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.

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@leesal123 I had similar symptoms right after taking generic anastrazole, and ended up taking brand name Femara for 5 years without these problems.

Here are side effects on medline (which I am sure you looked up.) Dehydration is not mentioned but dry mouth is on here. https://medlineplus.gov/druginfo/meds/a696018.html

It is important to note that the anastrazole, after less than a whole day in your system, had not yet reached a steady state, so your level was 1/4 – 1/3 the eventual level. It takes 7 days to get to steady state. http://www.drugs.com/pro/anastrozole.html

Since you had these reactions so quickly, I wonder if it is not the active ingredient of anastrazole but instead, fillers in the generic medication, causing your symptoms. That was the case for me.

I switched to letrozole and took brand name and did not have the same problems. Much later I did find a generic that did not trigger symptoms but I felt most comfortable taking the purer brand name.

I would say don't give up and investigate the possibility that you did not have anastrazole on board for long enough for the active ingredient to be the culprit. Try another anastrazole manufacturer, then try another medication (letrozole for instance) and finally try a brand name. This worked for me.

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@leesal123

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.

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@leesal123, @windyshores may be on to something when she says, "Since you had these reactions so quickly, I wonder if it is not the active ingredient of anastrazole but instead, fillers in the generic medication, causing your symptoms. That was the case for me."

Lee, you asked, "Do AIs really help decrease BC chances with ADH?" Here's an article about your options from Mayo Clinic:
– Breast cancer chemoprevention: Drugs that reduce risk https://www.mayoclinic.org/diseases-conditions/breast-cancer/in-depth/breast-cancer/art-20045353

Did you contact your oncologist about your reaction? Will you start anastrozole again?

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@colleenyoung Yes, I did contact my oncologist who told me it was up to me whether I tried again or not but to just let them know. The filler is something I did not even consider, and I am so glad this was mentioned. I did take another one yesterday. I changed the time I took it, from night to morning, so I was active all day. This morning I woke up very stiff, cold, thirsty, with dry eyes, and feel very achy. I am going to see how I do this week, but I will contact my PCP and request a baseline bone density test and bloodwork to find out my levels of Vitamin D. I am not sure why my oncologist said those are not necessary. I want to help myself and do whatever I can to be healthy. Has anyone been prescribed to take it every other day? Just curious if that was an option and if it helped to make side effects more manageable. I am so happy I came across this group.

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