Architectural distortion
I had my first mammogram ever in September with no history of breast cancer in my family. They called me back in for a diagnostic mammogram and ultrasound. The doctor then came in and told me that even though she was scheduling a biopsy I would be having surgery no matter what. She said that the biopsies aren’t always correct because they may not biopsy the correct place and that based on what she was seeing on all my imaging she was 90% sure it is malignant. I have my biopsy scheduled for the end of the week, but I am scared. If the biopsy comes back as benign, is there a possibility that I should not have the surgery she has recommended? How many others have had a doctor tell them that no matter the outcome of the biopsy surgery is a definite?
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Hello @reddiat. I’m really sorry you have to be here with us!! It’s shocking to be told we probably have cancer. My larger tumor was Bi-rads 5 and I was only told that I needed it biopsied. At first I was being optimistic that it would probably be benign because I remembered reading somewhere that 8 out of 10 biopsies are … so I let that news sink in, that I needed a biopsy. But then the next day I Googled Bi-rads 5 and realized it probably was cancer. Sometimes Bi-rads 5 tumors end up being benign - it does happen, but not very often.
Perhaps there are some exceptions, but from what I researched on Bi-rads 5, if the biopsy is benign, they will say it’s “discordant” - it doesn’t match with what they saw on imaging - and will do a surgery to remove it all anyway just to be absolutely sure they aren’t missing anything. I wasn’t told that by my doctor, but I read that and understood it so I was mentally preparing myself for a surgery no matter what.
I’m glad you found this forum. It’s a wealth of helpful information for every step of the way, if you end up needing it. Hang in there! You’ll have an answer soon. Waiting truly is the hardest part!
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Hi @reddiat , Architectural distortion is often caused by radial schlerosing lesions which are benign but sometimes occur close to malignant cells. These radial scars hide breast cancer from imaging so consequently it can be missed in a needle biopsy. For this reason an excisional biopsy (small lumpectomy) is often done to get a larger tissue sample for the pathologist to examine.
Under an older protocol my AD was just noted and observed. Two and a half years of clear mammograms later an oral surgeon determined I had cancer of some sort since I had an infected jawbone that wouldn't heal. It turned out to be a 3.2 cm IDC tumor with multiple radial scars in the margins and one positive lymph node. While stage 2 is not the end of the world they probably would have found DCIS (stage 0) in an excisional biopsy when the AD was first noticed. Although it sounds like unnecessary invasive surgery my experience explains why this protocol is now the standard of care. Your biopsy may still be benign but if there are cancer cells nearby it is best to find and treat them early.
Let us know how you get on. All the best going forward.
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Hi @rediatt
I am sorry you are also going through this stressful journey and I wish you a positive outcome 🤞
My recent experience is sounding a lot like yours, my very first breast check ended in mammo, ultrasounds, mri, core biopsy and excisional biopsy (surgery) all due to “architectural distortion”.. this was also a Birads 5 score.
In my case it was 2x radial scars and a whole lot of other benign proliferative findings.
I share my story with you as a positive scenario and to give you hope where AD findings and Birads 5 can end in benign results!
The surgery is pretty easy recovery wise and better to be on the safe side and have the surgery :)
all the best and let us know how you get on with your results, take care2 -
Hi @reddiat ,
I had a mammogram in May that was architectural distortion. They next week we did an US that confirmed the need for bx. The bx was positive for grade 1 invasive ductal cell. It was hormone positive , HER 2 negative on biopsy. I chose a partial mastectomy with reconstruction. this took place July 31. Genetics was negative for BRCA and no family hx. I felt nothing. it was a routine mammo. I was 55. I had radiation therapy in late September. We got the pathology back about 2 weeks after surgery and it confirmed the diagnosis with clear margins and they also took sentinel node and one more (both negative). the oncologist thought that would be all I would need but wanted to do the oncotype on the tissue from surgery as well. That took forever to come back but I had a surprising score of 27. That's way too high so he said I needed chemotherapy. I started TC chemo and I am about to do my third round on Monday.
When I was going through the part you are at right now, I thought, distortion… hmmm. must have just wrinkled up my boob and they just need another picture but I researched it and it almost always buys you at least a biopsy and even that is unclear so they usually suggest at least a lumpectomy just to be sure. In my case, I want to do everything I can to be sure. Its a personal decision. My oncotype was a lot more aggressive than they were thinking it would be. Turns out, I was just lucky to have found it this early, much longer and it would have been a higher grade and stage based on the oncotype. I urge you to get the lumpectomy just to be as proactive as possible…
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