Is breast architectural distortion reason to panic?

Posted by hannah1 @hannah1, Mar 2 6:23pm

I had my breast screening mammogram yesterday and it showed focal asymmetry/architectural distortion. I have an ultrasound scheduled but I am a diagnosed generalized anxiety patient therefore am struggling with a panic response. I really would appreciate some input into this diagnoses so I can get through the waiting and panic. Thank you so much.

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@hannah1 , my mammo in Dec 2021 showed architectural distortion with no ultrasound correlate, MRI showed nonmass enhancement. From there I had a stereotactic biopsy which came back as a radial scar( not really a scar but a benign lesion). Surgeon recommended removal of radial scar to make sure nothing was lurking around it. A focal area of atypical ductal hyperplasia was found in radial scar. The ADH has now put me in a high risk category and my monitoring has been increased. I too have anxiety. Don't be afraid to ask questions of your doctor and don't be afraid to get a second opinion. I write down all my questions before my visits, this way I make good use of the time I do have with the doctor. Positive thoughts your way and keep us posted,

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I hesitate to respond due to your already diagnosed condition with anxiety. I am not a doctor (but a retired RN of 36 yrs) I would like to share with you my associated story as I experienced a similar finding on a screening mammogram last May of 2022. My "layman's" understanding of architectural distortion and don't hold me to it is it describes a change in the tissue fiber of the breast that to some degree can be normal if it is not a significant amount of change from previous mammograms. My mammogram showed a borderline small amount of change from the previous year, almost imperceptible however the reading radiologist thank G-d leaned on the side of caution. The other factor is your age. Architectural distortion in postmenopausal women is statistically more significant in said population. I in fact did have breast cancer, multiple tumors throughout one breast, so small they were not perceptible on a mammogram. The blessing of this flagged mammogram for me was that my cancer was found in its early stages. Reflecting back, the fear and anxiety of the unknown were so much worse than the disease itself. I am now considered cancer free and finally getting back to living my life. I feel better than I have in years! My hope is that your f/u diagnostics are negative however if not, please know that you are going to survive and thrive. If cancer is found, it most is likely quite early. Every story is different, yet similar. Educate yourself. It decreases anxiety and empowers you from the initial shock of powerlessness. Please let me know how your sonogram goes. The amazing "sisterhood" will be here for you if needed. Don't hesitate to contact me if you have any questions or just need some support.

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@leesal123

@hannah1 , my mammo in Dec 2021 showed architectural distortion with no ultrasound correlate, MRI showed nonmass enhancement. From there I had a stereotactic biopsy which came back as a radial scar( not really a scar but a benign lesion). Surgeon recommended removal of radial scar to make sure nothing was lurking around it. A focal area of atypical ductal hyperplasia was found in radial scar. The ADH has now put me in a high risk category and my monitoring has been increased. I too have anxiety. Don't be afraid to ask questions of your doctor and don't be afraid to get a second opinion. I write down all my questions before my visits, this way I make good use of the time I do have with the doctor. Positive thoughts your way and keep us posted,

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What is your treatment plan for ADH? Are you taking any AIs or estrogen blockers? I am considering prophylactic mastectomy. Interested to hear your plans.

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@ellijk I tried anastrozole for about 17 days and had to stop due to bad side effects- heart palpitations. I have never had heart issues. For about 3 months after stopping I had hair falling out, my heart racing, brain fog, etc. My new breast doctor said it seemed I had an extreme reaction and suffered some withdrawal symptoms. She also felt given my medical history meds were really not needed at this time as part of the plan. Please keep in mind many, many people have no issues with AIs. I have now had 2 normal mammograms since my diagnosis of ADH last year. My doctor now wants to go to yearly mammograms, every 6 months clinical breast exams, and every other year maybe every 2 years an MRI. This new plan makes me pretty apprehensive as I have had some negative experiences with health care where I live. (I have switched all doctors since my original diagnosis and go to a research hospital). My breast doctor says ADH and ALH are often overtreated and care is not necessarily individualized. I have no genetic markers or family history. A prophylactic mastectomy was not offered as an option even when I inquired about it. I have made lifestyle changes- a plant-based diet, and daily exercise. I have lost 40 lbs and lowered my BMI. If I have learned anything in this journey, it is to advocate for yourself, ask lots of questions, and if you are not comfortable with the doctor get another opinion. Positive thoughts your way!

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@leesal123

@ellijk I tried anastrozole for about 17 days and had to stop due to bad side effects- heart palpitations. I have never had heart issues. For about 3 months after stopping I had hair falling out, my heart racing, brain fog, etc. My new breast doctor said it seemed I had an extreme reaction and suffered some withdrawal symptoms. She also felt given my medical history meds were really not needed at this time as part of the plan. Please keep in mind many, many people have no issues with AIs. I have now had 2 normal mammograms since my diagnosis of ADH last year. My doctor now wants to go to yearly mammograms, every 6 months clinical breast exams, and every other year maybe every 2 years an MRI. This new plan makes me pretty apprehensive as I have had some negative experiences with health care where I live. (I have switched all doctors since my original diagnosis and go to a research hospital). My breast doctor says ADH and ALH are often overtreated and care is not necessarily individualized. I have no genetic markers or family history. A prophylactic mastectomy was not offered as an option even when I inquired about it. I have made lifestyle changes- a plant-based diet, and daily exercise. I have lost 40 lbs and lowered my BMI. If I have learned anything in this journey, it is to advocate for yourself, ask lots of questions, and if you are not comfortable with the doctor get another opinion. Positive thoughts your way!

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Thank you for your response! You may be right about switching your doctors and moving to a better diagnostic/treatment facility. I have always been leary of the standard prescribed, one size fits all, treatments. Best of blessings to you!

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@leesal123

@ellijk I tried anastrozole for about 17 days and had to stop due to bad side effects- heart palpitations. I have never had heart issues. For about 3 months after stopping I had hair falling out, my heart racing, brain fog, etc. My new breast doctor said it seemed I had an extreme reaction and suffered some withdrawal symptoms. She also felt given my medical history meds were really not needed at this time as part of the plan. Please keep in mind many, many people have no issues with AIs. I have now had 2 normal mammograms since my diagnosis of ADH last year. My doctor now wants to go to yearly mammograms, every 6 months clinical breast exams, and every other year maybe every 2 years an MRI. This new plan makes me pretty apprehensive as I have had some negative experiences with health care where I live. (I have switched all doctors since my original diagnosis and go to a research hospital). My breast doctor says ADH and ALH are often overtreated and care is not necessarily individualized. I have no genetic markers or family history. A prophylactic mastectomy was not offered as an option even when I inquired about it. I have made lifestyle changes- a plant-based diet, and daily exercise. I have lost 40 lbs and lowered my BMI. If I have learned anything in this journey, it is to advocate for yourself, ask lots of questions, and if you are not comfortable with the doctor get another opinion. Positive thoughts your way!

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I’m so glad I asked the question about Anastrazole and memory loss. I’m finding that I’m not alone with this issue after using this drug. I’ve not been able to get any definitive cause for memory problems after use of Anastrazole

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@leesal123

@ellijk I tried anastrozole for about 17 days and had to stop due to bad side effects- heart palpitations. I have never had heart issues. For about 3 months after stopping I had hair falling out, my heart racing, brain fog, etc. My new breast doctor said it seemed I had an extreme reaction and suffered some withdrawal symptoms. She also felt given my medical history meds were really not needed at this time as part of the plan. Please keep in mind many, many people have no issues with AIs. I have now had 2 normal mammograms since my diagnosis of ADH last year. My doctor now wants to go to yearly mammograms, every 6 months clinical breast exams, and every other year maybe every 2 years an MRI. This new plan makes me pretty apprehensive as I have had some negative experiences with health care where I live. (I have switched all doctors since my original diagnosis and go to a research hospital). My breast doctor says ADH and ALH are often overtreated and care is not necessarily individualized. I have no genetic markers or family history. A prophylactic mastectomy was not offered as an option even when I inquired about it. I have made lifestyle changes- a plant-based diet, and daily exercise. I have lost 40 lbs and lowered my BMI. If I have learned anything in this journey, it is to advocate for yourself, ask lots of questions, and if you are not comfortable with the doctor get another opinion. Positive thoughts your way!

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My results came back as architectural distortion on my left, and it seems I can feel lumps. I’m so afraid but will move forward with the mri and ultrasound! I wanted to know were you sick or any other symptoms before your results, or after and how long? Do you have to have surgery or chemo like any details you can give me please do because I’m so afraid! I have 4 kids 2 adult and 2 minor, and I’m raiding them alone and really have no one!

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@clbolton1

My results came back as architectural distortion on my left, and it seems I can feel lumps. I’m so afraid but will move forward with the mri and ultrasound! I wanted to know were you sick or any other symptoms before your results, or after and how long? Do you have to have surgery or chemo like any details you can give me please do because I’m so afraid! I have 4 kids 2 adult and 2 minor, and I’m raiding them alone and really have no one!

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AD is how they found my breast cancer. Stage 1 with PE positive/ Her negative. Lumpectomy with radiation. Chemo is determined by your score for coming back. I am on hormone blockers for 5 years then they re-test. I previously always had yearly Mamos.

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@clbolton1

My results came back as architectural distortion on my left, and it seems I can feel lumps. I’m so afraid but will move forward with the mri and ultrasound! I wanted to know were you sick or any other symptoms before your results, or after and how long? Do you have to have surgery or chemo like any details you can give me please do because I’m so afraid! I have 4 kids 2 adult and 2 minor, and I’m raiding them alone and really have no one!

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Hi @hannah1 and @clbolton1, I see you got some very helpful responses from other members. I thought I'd take a minute to check in and see how you're doing and the followup tests you have scheduled. I'm proud of both of you for moving ahead despite the fear to get the ultrasounds and any necessary additional testing to find out what is going on.

Hannah, did you have your ultrasound? How are you doing with your anxiety? Remember those things that calm you. 🙂

Clbolton, what a lovely picture of you! I hope you'll add it to your profile. I know you're afraid. But you got 4 very good reason to take care of your health – your babies! I know they are adults and almost adults, but they'll always be babies to you, right? Have you learned anything since you last posted? Do you have a diagnosis?

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I had the same results yesterday and also have anxiety. The day after my mammogram, got a call to schedule. Going for a diagnostic mammogram next week. When I called my primary, she said I shouldn’t worry. It could have been a flap of skin that was pinched. I felt better but she didn’t explain it at all. I know we can’t stop be somewhat nervous while we wait for answers but you are not alone. Let us know how you are doing. I could also use more info on this as it’s all new to me. Best of luck to you!

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