Anyone dealing with Atypical Ductal Hyperplasia (ADH)?

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

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 @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.