Architectural distortion

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NeedPeace
NeedPeace Member Posts: 6
edited December 2020 in Not Diagnosed But Worried

I'm considered “elevated risk" for BC. My paternal aunt died in the 1990s of BC, I think in her 40s or 50s. No one else In the family. One gyn doc told me years ago I should get BRCA tested because I have very busy breasts. Lots of cysts, calcifications, and other benign stuff. A breast surgeon said that was not necessary. If my paternal aunt had the BRCA gene, we would see it in other family members which has not happened at all. In fact my paternal grandmother passed away in her 90s, my other paternal aunt is currently in her 90s and she has two daughters. No one has been diagnosed with cancer. I had my first surgery at age 25 to remove a fibroadenoma. I am currently 55. I've had three biopsies on the right breast and for over 30 years many diagnostic mammogram/US. This year the doctor said I need another biopsy on the left breast due to a 4 mm area of architectural distortion. Never heard of this term. Of course I left crying because this year has just been awful for so many reasons. I went online to research architectural distortion because i've never heard of this term And I've been crying ever since. The doctors can't really give me any words of encouragement until after the pathology report but they all say if it is cancer, it was caught early which is favorable, I guess. After my research, even something as small as 4 mm can be triple negative and as we all know now that's the most aggressive form of cancer. I'm widowed so I don't have any local family support except my children. And I don't want to lean on them. They're both young professionals just starting in the careers/marriages and have been blessed with fantastic lives. Thankfully I have three very good friends who I know I can count on. Anyway, has anyone had a similar situation? What was the outcome? Thanks for listening.....

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  • Beesie
    Beesie Member Posts: 12,240
    edited December 2020

    NeedPeace,

    Yes, architectural distortion might be a sign of breast cancer. But it also might turn out to be nothing serious at all. So don't jump to the worst case scenario.

    There have been lots of women through this site who've had biopsies due to architectural distortion, and many have had benign results. Do a search on the board and you'll find some recent cases where this has happened.

    And if it is cancer? Here again, don't jump to the worst case scenario. Could it be triple negative? Well, about 10% of diagnoses are (according to the SEER site). But almost 70% of diagnoses are ER+/HER2-. So if you are diagnosed, it is much more likely to be a favorable sub-type.

    Take it one step at a time. At this point all you know is that you will be having a biopsy for something that appears to be very small, and that might or might not be cancer. With luck, it's not cancer!

    Good luck with the biopsy. When are you having the biopsy?

  • NeedPeace
    NeedPeace Member Posts: 6
    edited December 2020

    December 11, results with MD December 23. I guess the reason why I'm so scared is because my husband passed away from a very aggressive cancer and it was horrible, the treatment, the surgery, the side effects, everything. And I know first hand how cancer can be a sneaky beast with micro-metastisis. I'm trying to stay positive but since I'm alone i have a lot of time of my hands and i did what you we should not do is research and only read the worst case scenarios. I need to jump on a site that only gives survivor stories!!! Anyway, this is what the NP said at the last office visit. My friend who is high risk for BC and gets annual diagnostic mammo/US followed by annual MRIs say this is encouraging news. “4 mm area of architectural distortion On mammo, no lymph nodes involved, did not see changes on ultrasound, needle biopsy with mammogram will be done. 80% chance biopsy is negative for cancer. If biopsy positive, will determine what plan is in terms of surgery, radiation, hormone or chemotherapy treatment. If biopsy is positive, a bilateral mastectomy is also an option. (I'm already thinking this is what i will do. For 30 years I've been told you might have cancer. I'm tired of the annual scare and anxiety ). If biopsy is negative, a treatment plan will still be laid out for monitoring, probably another mammogram in six months, ultrasound if needed. Concern is low to moderate with suspicious area. (again dealing with my husbands cancer i know how this can change so quickly) Cells can be atypical or cancer, including invasive cancer. If the biopsy is positive for cancer, prognosis is very good. (I guess these are words of encouragement).Waiting several weeks to have a biopsy or surgery is not going to worsen the area of concern. It takes 5 to 7 years for cancer to develop from a suspicious area.“ Thanks for responding. It really helps. I would not be so concern if my husband was here with me as Im still grieving.......

  • Beesie
    Beesie Member Posts: 12,240
    edited December 2020

    I'm so sorry about your husband. I completely understand the extra fear you face because of what he went through. And dealing with this alone, and during a pandemic, is pretty awful. I appreciate that you don't want to burden your children at this point in the process. The good news is you've found us and you'll get lot of support here - from people who have gone through the same thing.

    When I read your first post, I thought how much your experience sounded like mine. I had my first surgery - an excisional/surgical biopsy to remove a fibroadenoma - when I was 16. This came just a few months after a maternal aunt was diagnosed with breast cancer. Then another surgery for another fibroadenoma at 24. Lots of callbacks and biopsies after that. When I hit peri-menopause, I started to develop cysts; over the years I've had more cysts than I can remember. And yes, after all that, I was diagnosed with breast cancer when I was 49; this time my diagnosis came just 6 months after my mother's diagnosis (she was 80 when diagnosed). Both of us were Stage IA. It's been over 15 years for both of us, and we're both just fine.

    Hopefully the architectural distortion found on your imaging is not cancer - 80% chance of benign is good! But if it is cancer, even with your history (just like mine), and even with what happened to your husband, there is no reason to think that this won't be an early stage easily treatable cancer. Yes, the worst case is always possible, but there is nothing that you've said that seems to lean you in that direction. So don't go there. As the saying goes, don't borrow trouble. Focus on what you know, which is that you have an upcoming biopsy to find out what's going on. You don't know what comes after that - it might be a celebration for getting benign results!

  • LivinLife
    LivinLife Member Posts: 1,332
    edited December 2020

    Welcome NeedPeace! Sorry for all you are going through and how it adds to the loss of your husband!!! Truly hear Beesie's words.... so important you grab onto what she is saying. I too understand the sneakiness of cancer - I lost both my parents and three of my four siblings to various cancers, with the most recent just 13 months ago. So I understand the stress and fear of what you are going through now on some level. I'm glad you have three good friends it sounds like you can trust and count on... I hope you've talked with one or more of them so you have more than internet support as good as this site is.

    I cannot relate to the architectural distortion. I did have many call backs on my right breast and two stereotactic biopsies on that breast as well. My DCIS showed up on my left breast and was monitored over 17 months.... a little longer than would've been due to my youngest sister being terminal and she was my priority, then a 3 month delay (last late March until July) due to COVID shut downs...

    Please check back in with us once you have results...

  • NeedPeace
    NeedPeace Member Posts: 6
    edited December 2020

    Thank you ladies for the support. I finally got the nerve to read my report in detail. So I'm feeling a little positive. This is what the radiologist wrote.

    "Left breast subtle (after the mammogram, she said 4 mm) architectural distortion in the upper, outer quadrant posterior depth approximately 10 cm from the nipples is appreciated. There is associated asymmetry with subtle increase density adjusting to this and extending posteriorlywhich is unchanged (this was compared from October 2011 to November 2020 so I'm interpreting this as a positive, “no change"...would you agree?) There is mild parenchymal irregularity of the left breast parenchymal pattern in the superior aspect however with tomograms no significant changes are seen. (No changes seen, this is good right?) Innumerable calcifications in the left breast show no significant change compared to remote prior studies (October 2011 through November 2020. again the terminology of “no changes" is used. And I would say most of these were diagnostic and not screening) A benign lymph node in the inferior posterior breast is unchanged (here is that word unchanged again.")

    The impression with the ultrasound said "benign findings, left breast ultrasound with cysts and benign appearing solid mass is noted. The visualize axilla is normal with no suspicious lymph nodes seen"

    What is somewhat alarming is she categorized the assessment as 4 B which is “moderate suspicion for malignancy".

    I'm trying to stay positive by telling myself if this is precancerous or cancer, it is caught very early and I would think at a cellular level. I should thank my eagle eye radiologist for detecting the subtle change!

  • LivinLife
    LivinLife Member Posts: 1,332
    edited December 2020

    Glad you have your results while I hear your mixed emotions depending on particular statements in the report. Generally I've been told if something is or remains unchanged that's a good thing. It's when something has changed a biopsy was recommended.... I think your approach working with positive self-talk is a good one while still waiting for a next step. Obviously you'll be back and forth with that though try to gently redirect yourself back to the positive self-talk or focusing on whatever else you're doing as best you can....

  • NeedPeace
    NeedPeace Member Posts: 6
    edited December 2020

    My biopsy is scheduled for this Friday and I’m terrified and just a mess. Im trying to stay positive but I cry every day because I can’t believe I’m having to go through this without my husband who just passed away from cancer. Please pray for benign results. If it is cancer please pray for the kind that does not require chemo that gives you nasty side effects.

  • LivinLife
    LivinLife Member Posts: 1,332
    edited December 2020

    Thanks for letting us know.... warm healing thoughts sent your way for Friday! Thankfully you are closer to getting that part over with. I hope you have some things lined up for the weekend and a couple days after that while waiting for results. So important you do what you can to relax, distract and enjoy as you can during the waiting - yes, the worry thoughts will be there too...

  • NeedPeace
    NeedPeace Member Posts: 6
    edited December 2020

    I’m keeping busy but any down time I have, my mind goes to that dark place. I wish all breast centers had the capability to do a biopsy and then get results immediately. The 4 weeks of waiting for answers is brutal.I’ve already convinced myself that surgery, even radiation, is something I can handle on my own. Chemo is what scares me!

  • NeedPeace
    NeedPeace Member Posts: 6
    edited December 2020

    BENIGN!!! I received the pathology report through the patient portal and final diagnosis was “no malignancy identified!!! I will continue praying for everyone to be cancer free.

  • Beesie
    Beesie Member Posts: 12,240
    edited December 2020

    Great news! Congratulations!


  • LivinLife
    LivinLife Member Posts: 1,332
    edited December 2020

    Sooooo happy for you!!!! Thanks for letting us know!! I hope you've now Found(some)Peace....

  • Lulu04
    Lulu04 Member Posts: 3
    edited December 2020

    My mother was told she had an architectural distortion earlier this month on a routine mammogram that was confirmed by a diagnostic 3d Mammogram. Ultrasound did not show any findings which we learned is a good sign. The report said "no sonographic evidence of malignancy" Birad score 4B (Suspicious findings) She had a stereotactic biopsy done last week. My mom is not someone who typically does well with these things so she asked her pcp to prescribe her a few xanax to calm her nerves and that really helped. The biopsy went very well and she just received the call that it was BENIGN.

    This forum was a true God send when dealing with the unknown so I wanted to come on here and share a little bit of information I found.

    3D mammograms are extra sensitive in finding architectural distortions. Architectural distortion will always need further investigation so if you are told you need a biopsy that is standard procedure. If a radiologist determines even a 2% risk of possible malignancy they will want to biopsy.

    "Architectural distortion on DBT is less likely to represent malignancy if there is no sonographic correlate; however, biopsy is warranted even in the absence of a sonographic correlate, given the nearly 30 percent risk of malignancy in this setting."

    The PPV of malignancy in DBT detected AD without an US correlate in our series of 45 cases was 6/45 (13.3%). In the absence of an US correlate, the PPV of AD is lower than that mentioned in prior literature but exceeds the 2% threshold to justify DBT-guided biopsy.

    We are pending the pathology report to see what caused it, all we know thus far is the result is benign.

    I really want to thank all of you and DJ Mammo who take the time to respond and offer expertise, guidance and reassurance to women who are very concerned. Your stories really helped me navigate through this for my mom and ease my mind when at times the worry was overwhelming.

    Not everyone with benign results come back on here with an update so I wanted to create a post and offer some hope for anyone currently in this situation.

    Wishing you all the very best.

  • LivinLife
    LivinLife Member Posts: 1,332
    edited December 2020

    So glad you and your mom had a good outcome!!! Thank you for sharing the information you gathered as well!

  • Lulu04
    Lulu04 Member Posts: 3
    edited December 2020

    Thank you so much!

  • Lulu04
    Lulu04 Member Posts: 3
    edited December 2020

    Thank you so much!

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