Anyone dealing with Atypical Ductal Hyperplasia (ADH)?

Good Morning! Question for all, I had to take anastrozole for ADH diagnosis but had to stop because of side effects. I am left with extreme vaginal dryness thanks to the med and I guess menopause. What do people use to help? My doctor( GYN and breast surgeon in agreement) has prescribed a low dose vag estrogen cream( pea size 3 x a week), but I need something topical too. I am overwhelmed by the choices on the market and the whole trial-and-error process. Also trying to find one that is paraben free. I wish there was a vitamin one could take! ugh. 🙂 Please know I am not looking for medical advice, just trying to find out what is out there and what has worked for some. I just stare at the aisle in the store and online pulls up so many options. Also, I apologize if TMI but I figure women need to talk about this kind of stuff to get help.

I’m struggling with my ADH diagnosis that I literally got Xmas eve...found out that I needed an ultrasound done a couple of days before Thanksgiving then had it done the day before I was cooking for a slough of people at my house. Biopsy done 2 WEEKS prior to Xmas Eve BUT I’m lucky like that and got them Xmas eve morning!! This was my 3rd mammogram ever since I will be 43 in a couple months..I have ADH and a PASH. In the last year I have had 3 “precancerous” spots removed from a dermatologist and according to the oncologist I have started seeing melanoma and breast cancer go hand in hand. I want a double mastectomy and my mind is firm on that BUT my oncologist and a ridiculously annoying second opinion one want me to do the “chemo pill”-their words not mine- for 5 years of course with tons of side effects that I without a doubt will get!! Had genetic testing done because there is background in that department but it was negative...the unfortunate part of that is that they don’t know what is causing these cancerous cells-again their words not mine! I go this Friday to have the marker placed in the area and then on the 8th to remove the ADH...he will NOT take margins which I don’t understand and I feel as if these particular doctors aren’t doing their job! Said my insurance won’t pay for a double mastectomy and after the 8th I will go to the “cancer prevention center” where a plan will be created for me...chemo pill...I said as much to him and he said “plenty of women take it”. I’m a mom of 2 and 42 who has made my mind up and want a double mastectomy and it boils down to money and I despise these doctors...however, I’m extremely angry at how these last couple of months have played out regardless of the incompetence!!

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.

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.

@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.

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........

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?