1. < Breast Cancer

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 Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 7, 2022
In reply to @margo19 "I had a lumpectomy 2 years ago for non cancerous DCIS in one breast. Now my..." + (show)
@margo19

I had a lumpectomy 2 years ago for non cancerous DCIS in one breast. Now my mammogram shows suspicious calcification in the same breast in another spot. The breast surgeon did a biopsy and the result was Atypical ductal hyperplasia with associated micro-calcifications. She wants to do another lumpectomy to remove them. I am 70 years old, and wonder if it would be better to just have a mastectomy and be done with it. I am otherwise in good health. Any advice is appreciated.

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Margo, welcome. Choosing between a lumpectomy vs a mastectomy is a big decision. You may be interested in this related discussion:
- Preventative double mastectomy https://connect.mayoclinic.org/discussion/preventative-double-mastectomy

If I may, I might suggest discussing the pros and cons of mastectomy vs lumpectomy with your surgeon. Ask questions about the possible benefits vs risks. Does a mastectomy mean that you will be "done with it"? While that may seem logical, is it true in your case? Your surgeon can answer those types of questions tailored to your preferences.

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1 reply
maureenmckean | @maureenmckean | Oct 1, 2022

No advice. I was just diagnosed with ADH Wednesday from a biopsy taken due to suspicious micro calcifications. Seeing the breast surgeon Monday. Has anyone had a lumpectomy and they discovered cancer. That’s my main fear is that I do have cancer they just didn’t get a sample of it from the biopsy.

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1 reply
margo19 | @margo19 | Sep 30, 2022

I had a lumpectomy 2 years ago for non cancerous DCIS in one breast. Now my mammogram shows suspicious calcification in the same breast in another spot. The breast surgeon did a biopsy and the result was Atypical ductal hyperplasia with associated micro-calcifications. She wants to do another lumpectomy to remove them. I am 70 years old, and wonder if it would be better to just have a mastectomy and be done with it. I am otherwise in good health. Any advice is appreciated.

REPLY
1 reply
karenpow | @karenpow | Sep 30, 2022
In reply to @leesal123 "@karenpow I have since switched all doctors. Just had first 6 month mammo and thankfully all..." + (show)
@leesal123

@karenpow I have since switched all doctors. Just had first 6 month mammo and thankfully all is good. New doc did not think meds were the way to go at this time based on family/medical history and things I have implemented. Of course if anything changes we revise the plan. Since my ADH diagnosis I have lost almost 40 lbs, lowered my bmi, switched to a plant based diet, and exercise daily. I think there is still a lot they don't know about ADH. Previous oncologist prescribed meds for anyone with higher than normal risk, nothing was individualized. Seems like there could be a titre to do to monitor estrogen levels and determine dosage of AI, maybe every other day instead of daily or something like that. Every woman is different. Best of luck and sending positive thoughts your way for you and your family.

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IM SO HAPPY YOU ARE NOT TAKING DRUGS. YOUR LIFESTYLE changes will benefit you the rest of your life. I have been exercising x 39 years n its the greatest.....Take care n thank you for your thoughts for my pink family.

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leesal123 | @leesal123 | Sep 30, 2022
In reply to @karenpow "I have been researching a ton and MANY women are having those side effects from aromatase..." + (show)
@karenpow

I have been researching a ton and MANY women are having those side effects from aromatase inhibitors... i dont know if it is necessary to take AIs with non cancer. i am in a lot of facebook breast cancer support groups and many women are finding success with non-rx medications like supplements and diet. exercise will help prevent breast cancer by 30%. your diet needs to be pristine, no meat, no soy, no dairy, low carb, no sugar, no pasta, bread, potatoes (they turn to sugar quickly)... THIS IS WHAT THE WOMEN are saying that got rid of their cancer by diet & supplements. my 2 sistsers and mom have breast cancer. i am on here to learn so i can try and help them........

Jump to this post

@karenpow I have since switched all doctors. Just had first 6 month mammo and thankfully all is good. New doc did not think meds were the way to go at this time based on family/medical history and things I have implemented. Of course if anything changes we revise the plan. Since my ADH diagnosis I have lost almost 40 lbs, lowered my bmi, switched to a plant based diet, and exercise daily. I think there is still a lot they don't know about ADH. Previous oncologist prescribed meds for anyone with higher than normal risk, nothing was individualized. Seems like there could be a titre to do to monitor estrogen levels and determine dosage of AI, maybe every other day instead of daily or something like that. Every woman is different. Best of luck and sending positive thoughts your way for you and your family.

REPLY
1 reply
karenpow | @karenpow | Sep 29, 2022
In reply to @leesal123 "Good Morning! I was diagnosed with a focal ADH in a radial scar back in February...." + (show)
@leesal123

Good Morning! I was diagnosed with a focal ADH in a radial scar back in February. I had taken anastrozole for 1 day and had strange side effects, I changed the time of day I took it and tried again, I lasted for 17 days when I developed flutters in my chest, so I stopped taking it again. When I first called to report to the oncologist, she said that is very unusual. When I went in for my appointment she decided to order a 48 hr heart monitor. Still waiting to go over the results, which have been in MyChart for 10 days now. I was told the PCP will go over the results with me even though the oncologist wanted it and was not copied on the results. I finally got a hold of the NP who will meet with me next week to review the results. My anxiety is very bad since coming off the AI which increases my heart rate, my hair is now very dry and coming out, and my mood is all over the place. It almost feels like menopause. Is it normal to have a hormone imbalance after taking the AI for such a short time? I have actually lost confidence in my care which adds to the anxiety. I have been on the phone for the past 3 days trying to find a new PCP and no one is taking new patients, due to a shortage of doctors. Sorry for this long vent, I am just so frustrated. I have made lifestyle changes- plant-based diet, lost 25+ lbs, exercise, etc. I will do everything I can to help myself. Has anyone else not taken meds for ADH?

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I have been researching a ton and MANY women are having those side effects from aromatase inhibitors... i dont know if it is necessary to take AIs with non cancer. i am in a lot of facebook breast cancer support groups and many women are finding success with non-rx medications like supplements and diet. exercise will help prevent breast cancer by 30%. your diet needs to be pristine, no meat, no soy, no dairy, low carb, no sugar, no pasta, bread, potatoes (they turn to sugar quickly)... THIS IS WHAT THE WOMEN are saying that got rid of their cancer by diet & supplements. my 2 sistsers and mom have breast cancer. i am on here to learn so i can try and help them........

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1 reply
karenpow | @karenpow | Sep 29, 2022

DO NOT FEEL BAD... yes it can become cancerous in the future. I would seek out an oncologist for an opinion. I used to work for a pathologist and I use to type up many reports where women had this. however I dont know if they went on to have surgery to remove this or they just kept an eye on it. i dont have breast cancer but my mother is in remission from stage 1. one of my sisters is in remission from stage 2B, and my other sister unfortunately just found out she is stage 4 now. she was stage 2 in FEBRUARY 2019. im just here to educate myself on how I can help my sister....

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memawjax | @memawjax | Sep 26, 2022

It was an encouraging appointment, I have one more year to complete my tamoxifen treatment and the Doctor said I should be at a low risk when I complete my tamoxifen. She says once over age 65 the percentage drops and I am 67 and if I continue my treatment till then I should be in a good place. I will still have to have mri and regular mammograms. She also said there are usually no bad side effects coming off the tamoxifen. Thank you for your concern.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 24, 2022
In reply to @memawjax "Hi, please never apologize for how you feel. I was diagnosed with ADH 5 years ago..." + (show)
@memawjax

Hi, please never apologize for how you feel. I was diagnosed with ADH 5 years ago and have been taking Tamoxifen for approximately 5 years. I am being referred to a breast cancer high risk doctor in 2 weeks, makes me also wonder if I will be able to come off the Tamoxifen or what is the next course of treatment. I finished a year of Keytruda for Melanoma, I really don’t want any other treatments.
I would love to hear from others that went through Tamoxifen and what happens when you come off it. Good luck and keep the faith!

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@memawjax. I can understand your not wanting any other treatments. What did you learn at your appointment with the high-risk breast cancer specialist? Will you continue with tamoxifen? Same dosage?

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memawjax | @memawjax | Sep 9, 2022
In reply to @char820 "@leesal123 I am right there with you. I had BIL arak lumpectomies last week and ADH..." + (show)
@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

Jump to this post

Hi, please never apologize for how you feel. I was diagnosed with ADH 5 years ago and have been taking Tamoxifen for approximately 5 years. I am being referred to a breast cancer high risk doctor in 2 weeks, makes me also wonder if I will be able to come off the Tamoxifen or what is the next course of treatment. I finished a year of Keytruda for Melanoma, I really don’t want any other treatments.
I would love to hear from others that went through Tamoxifen and what happens when you come off it. Good luck and keep the faith!

REPLY
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