Anyone dealing with Atypical Ductal Hyperplasia (ADH)?

Reply to all with ADH. Almost five years ago I was diagnosed with ADH and Atypical Lobular Hyperplasia. My mammogram at the time showed microcalicifications. No lumps because that area was lobular and not ductal (lobular tends to make more 'lines' in the breast vs. lumps...tricky stuff.) I had a biopsy and lumpectomy of the area was recommended. The pathology showed ALH. I was put on a six month schedule of mammograms which I followed closely. They called my condition a Stage 0 cancer...as in you might get cancer and you might not. Almost three years ago I was diagnosed with Stage 1 cancer and had a bi lateral mastectomy. Luckily my cancer had not spread to the lymph nodes but it was invasive.
My cancer was harder to follow because ultimately it was of the Lobular type and that doesn't make lumps that are detectable all the time via mammogram. I didn't find my cancer via mammogram (in fact it wasn't seen on the mammogram the day of the mastectomy).....because of the lobular type it was a small area growing in a line of cancer cells (I'm sure that's not entirely medically accurate, but the best way I can describe it). My point being this............
......with ADH and ALH you are finding suspicious breast changes in the earliest stages and it may or may not become invasive and may or may not need further treatment. In my case the Stage 0 was in my left breast and the Stage I Invasive was in the right (again, peculiar to Lobular...it can more easily form in both breasts). I chose a bi lateral mastectomy because I feared not catching the cancer at a manageable stage and in my case that was the best decision. Please make sure you have doctors who take your concerns seriously and insist on complete testing which includes MRI's to detect even smaller changes. I am grateful for the doctors I had with my ADH and ALH because they impressed upon me my increased risk and although I'm sorry I was one of the people who ended up with cancer, I am also lucky that my cancer was caught as early as it was.
My physical therapist, post mastectomy, was a quite young woman who opted for a bilateral mastectomy with ADH. She wanted to completely eliminate her risk of invasive cancer. It was a bold decision but looking back I would have had my breasts removed at my first diagnosis as well, to avoid the worry and fear that one goes through each six months. That's just one opinion. After all, I hoped I wouldn't have more issues and invasive cancer. It is understandable that you are very worried. It's a great 'unknown' and making these decisions is truly hard.
Find doctors you trust, research as much as you can and continue to reach out. No harm in waiting another six months or even a year and continue to push for the best testing you can get. I hope you're one of the lucky ones who ends up with no further problems but if you're not comfortable with the treatment, testing or answers you get from your doctors.......find new ones and make sure you feel assured that your situation is being closely monitored.
Hugs to you!

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........