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Anyone dealing with Atypical Ductal Hyperplasia (ADH)?
Breast Cancer | Last Active: 13 hours ago | Replies (231)Comment receiving replies
Hello,
So I came here searching for some type of support group, feedback or anything to help with the “in between” feeling of ADH/FEA and in the past micro calcifications. I think I found what I was looking for. This forum helps with the feelings of isolation, confusions and loneliness of ADH and the difficult decisions you have to make for a diagnosis that is not cancer. My story:
5 years ago I had a stereotactic biopsy on the right. Showed micro calcifications. Breast specialist recommended Tamixifen x5 years, I refused. At the time I was 47. Mom has had breast cancer 3 times and two of her sisters twice. My genetics are negative.
Fast forward: January 2022 I found a lump in right breast, same area. Biopsy showed fat necrosis - thank goodness right? Well an mri was done bc of my high risk and the results were discordant on the right and requires lumpectomy and on the left biopsy done on a suspicious area and found ADH/FEA which also needs to be excised.
It was recommended that I have the bilateral mastectomy with reconstruction as I am very high risk given family members. Specifically mom and precious micro calcifications and the discordant findings on mri.
I opted for bilateral lumpectomy for now since genetics came back negative. If there ia a malignancy of any kind found after lumpectomies, I will then move forward with mastectomies.
I find it so difficult to make decisions based on this very vague diagnosis. At one point you’re told it could or couldn’t turn to cancer, but at the same time recommending removing your breasts. To me that is incredibly conflicting and has/is creating SO much stress for me.
Any feedback is more than welcomed. I’m having trouble concentrating and living a normal life with minimal stress. My suregery I scheduled for 05/09/22.
Thank you all so much
Char
Replies to "Hello, So I came here searching for some type of support group, feedback or anything to..."
Welcome @char820. I agree. Atypical Ductal Hyperplasia (ADH) and the choices you have to make are confusing and isolating. You're not alone. I'm tagging fellow members like @khauff @pcarpent @jodymattinen @elsajohnson @doyoga @myredss04 @corinneberg and @trixie1313 who have faced similar tough choices as you are now.
I know that it is hard to think of anything else between now and your upcoming surgery. Have confidence is the informed, guided choices you made with your trusted doctors. Now is the time to focus on you and healthy living. And to ask any questions you might have about the upcoming surgery.
What would help you prepare and to know what to expect? What activities do you do to take your mind of things for a brief respite?
Hi Char, I have not been exactly where you are but a close situation at the beginning of my journey. Like you I was having a hard time concentrating and taking care of business when my mind was in a loop of worry and decision making. This is a very difficult thing.
I have learned to give myself time to worry once or twice a day for 30 minutes, then if I start obsessing at a different time, I can say nope, I will think about this during its time, this time is for something else.
I also would applaud you for what seems like a very rational and well thought out decision of going with lumpectomies then if cancer is found move ahead with mastectomies.
I hope you can likewise think about endocrine therapy in this way. Keep an open mind and get as informed as possible about why exactly the doctors are recommending it for you. Because you are younger than most of the people who have to make these decisions, you have more to consider about quality of life. You also have more years to live with the decisions you make or revise them as necessary. I am quite close to your age, just a youngster.
Do you have a list of questions for your doctor, about surgery? How about in reference to endocrine therapy?
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I wanted to also add that taking the estrogen blockers is also a difficult decision. Since I’m opting for the lumpectomies, assuming nothing is found then that is the strong recommendation. Again, all of these very large treatments with a relatively dismissed diagnosis since it is not cancer. Such a difficult place to be in….