Anyone dealing with Atypical Ductal Hyperplasia (ADH)?

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....

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.

@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?

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!

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?

@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.

@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?

@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.

@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

@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