1. < Breast Cancer

Is breast architectural distortion reason to panic?

Posted by hannah1 @hannah1, Mar 2, 2023

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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Lisa | @kods | Jun 18, 2023
In reply to @randy36 "I am so pleased you reached out. My answer based on months of questions, seeing other..." + (show)
@randy36

I am so pleased you reached out. My answer based on months of questions, seeing other doctors etc. is no. If this is happening to anyone, no one is talking about it. What I have found is that none of the many doctors and nurse practitioners were aware of the tissue size requirement of the tumor. If they were somewhat aware, they didn't know the different average sizes of tumor biopsy specimens produced by the various modes of biopsy. What needs to be well known by the doctors and surgeons is to make sure their patient has enough unfettered, unexposed to AI tissue to insure that an Oncotype DX test is possible if needed. I now find out I will never know even after 5 yrs if I need to continue the letrozole. I am flying without a seatbelt...I feel as if I have no clear prognosis and have had to accept this. If you would like to discuss my findings further...please feel free. I don't think I am allowed to give you my contact info.

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Thanks so much for your reply. I am about 6 months into Anastrozole. (Not liking the joint pain).
I recently have been wondering about trying for a different lab to test? My oncologist said he’d never seen not being able to get the oncotype. He was newer to the system where I saw him. (If that makes sense … it’s university system)
And yes! I totally understand what you’re saying about not knowing and not having a seat belt!
Thank you again!

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1 reply
Randy 36 | @randy36 | Jun 19, 2023

If I understand your comment about your "university" Dr, it is clear he has no understanding of the necessary tissue condition and size needed for the OncoDx Type testing. Without this understanding and the new protocols that may become practice like...starting patients on AI's before lumpectomy or mastectomy, are canceling their ability to use these amazing tests to guide our future treatment. This I believe is the missing link in the diagnostic chain of procedures. I have tried to contact Exact Sciences, the company that offers the OncoDx Type tests regarding my situation with little interest other than confirmation of my current understanding. Oncologists, surgical oncologists, nurses, interventional radiologists, and anyone involved in the diagnostic decision flow chart of actions need to be educated and informed by Exact Sciences so as to avoid situations like ours.

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Randy 36 | @randy36 | Jun 19, 2023
In reply to @kods "Thanks so much for your reply. I am about 6 months into Anastrozole. (Not liking the..." + (show)
@kods

Thanks so much for your reply. I am about 6 months into Anastrozole. (Not liking the joint pain).
I recently have been wondering about trying for a different lab to test? My oncologist said he’d never seen not being able to get the oncotype. He was newer to the system where I saw him. (If that makes sense … it’s university system)
And yes! I totally understand what you’re saying about not knowing and not having a seat belt!
Thank you again!

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Regarding your joint pain, there are a number of things you can do to help, of course with your oncologist's approval. If your joint pain is really debilitating, a different AI like letrozole may have fewer side effects for you. When I started feeling better 3 months after my double mastectomy and reconstruction, I also started becoming more active and yes, that helped. If I wake up with aches and stiffness, I occasionally take two ibuprofen with good results so I can move. I make sure my vitamin D levels are in the upper range of normal, This made a huge difference in the joint pain. The doctors I've talked to look at me blankly when I tell them this. Of course, a good diet is always part of feeling well. I wish you well in your journey to health and acceptance 🙂

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Mentor
Chris, Volunteer Mentor | @auntieoakley | Jun 19, 2023
In reply to @randy36 "I am so pleased you reached out. My answer based on months of questions, seeing other..." + (show)
@randy36

I am so pleased you reached out. My answer based on months of questions, seeing other doctors etc. is no. If this is happening to anyone, no one is talking about it. What I have found is that none of the many doctors and nurse practitioners were aware of the tissue size requirement of the tumor. If they were somewhat aware, they didn't know the different average sizes of tumor biopsy specimens produced by the various modes of biopsy. What needs to be well known by the doctors and surgeons is to make sure their patient has enough unfettered, unexposed to AI tissue to insure that an Oncotype DX test is possible if needed. I now find out I will never know even after 5 yrs if I need to continue the letrozole. I am flying without a seatbelt...I feel as if I have no clear prognosis and have had to accept this. If you would like to discuss my findings further...please feel free. I don't think I am allowed to give you my contact info.

Jump to this post

There is a private message system with connect for sharing personal info with select others.
Little envelope, top right of screen should open it and send to selected username.
Apologies if you already knew this.

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amyjan | @amyjan | Jun 22, 2023
In reply to @randy36 "I hesitate to respond due to your already diagnosed condition with anxiety. I am not a..." + (show)
@randy36

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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I was just diagnosed with architectural distortion. After 15 years of normal mammography’s, it showed up on my screening and I just went back for my follow up diagnostic/spot compression and u/s. The architectural distortion still remains on mammo but didn’t show on u/s. So the dr had the u/s tech tell me to come back in 6 months and that it’s nothing it’s just breast tissue. I only found out I still had distortion because I read the report. I’m thinking maybe I should get a second opinion. Waiting 6 months is just causing me so much anxiety. I waited two weeks for my follow up and that was torture. I’m also 54 and do have intermittent pain in the area of concern and my nipple also seems to inverted more than usual.

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Randy 36 | @randy36 | Jun 22, 2023

I would insist on an MRI. I had multiple unseen small invasive ductal tumors that were seen on an MRI but not US, and vice versa. My point is that you have symptoms and they have not exhausted all avenues of diagnostics yet. Best wishes to you.

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mamadani | @mamadani | Aug 24, 2023

I just went for an ultrasound due to breast pain/tenderness. I was told they found an architectural distortion about 3cm from my nipple but my doctor has been terrible about explaining anything. I’m a nervous wreck right now…

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2 replies
Mentor
Chris, Volunteer Mentor | @auntieoakley | Aug 27, 2023
In reply to @mamadani "I just went for an ultrasound due to breast pain/tenderness. I was told they found an..." + (show)
@mamadani

I just went for an ultrasound due to breast pain/tenderness. I was told they found an architectural distortion about 3cm from my nipple but my doctor has been terrible about explaining anything. I’m a nervous wreck right now…

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I know this is really hard, but try not to jump ahead, an architectural distortion doesn’t always mean cancer. Waiting for the next thing or bit of information seemed to me to be the hardest thing about the diagnostic time. At some point I would probably reconcile that I have to drag information out of my doctor (if I really like him), or find another doctor. Have they made you an appointment for an imaging study or a biopsy?

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 4, 2023
In reply to @mamadani "I just went for an ultrasound due to breast pain/tenderness. I was told they found an..." + (show)
@mamadani

I just went for an ultrasound due to breast pain/tenderness. I was told they found an architectural distortion about 3cm from my nipple but my doctor has been terrible about explaining anything. I’m a nervous wreck right now…

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@mamadani, how are you doing? Any update?

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1 reply
mamadani | @mamadani | Sep 13, 2023
In reply to @auntieoakley "I know this is really hard, but try not to jump ahead, an architectural distortion doesn’t..." + (show)
@auntieoakley

I know this is really hard, but try not to jump ahead, an architectural distortion doesn’t always mean cancer. Waiting for the next thing or bit of information seemed to me to be the hardest thing about the diagnostic time. At some point I would probably reconcile that I have to drag information out of my doctor (if I really like him), or find another doctor. Have they made you an appointment for an imaging study or a biopsy?

Jump to this post

My doctor didn’t seem to care one bit so I’m actually going for a second opinion at an actual breast care center this week. I hope I get some answers and hopefully a doctor who cares!

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