Architecture distortion with benign biopsy but sent to MRI and surgeon

gdlktt86

Hi everyone,

I am new here and just went through a roller coaster with my breast exams over the past week. Hoping to get some help and support from this group.

I am 38 and just finished breastfeeding my 1 yr old. I did my first mammogram last Friday and got callback for diagnostic mammogram followed by ultrasound. I was told I have architecture distortion on my mammogram and my ultrasound showed some correlation like hypervascularity in the same area. The radiologist marked it as BIRADS 4 and recommended a biopsy. She told me she does not think this is breast cancer but to err on the safer side she suggests biopsy it to rule it out. She also said she expect the result to come back as negative.

so I schedule the biopsy and another radiologist did it this week. I just got the result today and it is benign! The report says it’s fibrosis something. However, I don’t feel like I can celebrate because the radiologist who did the biopsy recommended MRI as next step following by surgeon consultation.

I was fairly confused and asked her to call me directly. She first told me she expects the result to be either DCIS or radial scar. And since the result is neither of these two she suspected there might something we missed hence we need to do a MRI then send me to a breast surgeon for consultation. I asked why we did not do MRI first then biopsy, she then told me it’s a standard process to send all patients with AD on mammo to surgeon consultation, irrespective of the biopsy results. And since she thinks it’s either DCIS or radial scar, either one would require a surgery. I was fairly shocked and also pissed at the same time. Because none of this information was communicated with me during my mammogram results explanation or before my biopsy. So I completely did not know what to expect after my biopsy results.

At this point I felt the benign biopsy result does not mean much (which makes me feel sad as I was using all my energies to keep myself sane while waiting for the result) and there are many more tests need to be done. Also feels like the radiologist is fairly anchored on I have something there and they just need to keep running tests to get it.

I am wondering if anyone here has similar experiences and can/want to share your perspectives? I’d also love to understand if this standard process of sending all patients with AD to surgeon consultation and potentially (follow up most cases) surgery removal of the area is actually the case in your experiences/areas?

Thank you all! Sending lots of love, support and positive thoughts to everyone here. Tough process, and I am glad we have each other to lean on.

maggie15

Hi @gdlktt86, I’m sorry you are dealing with AD. It is often caused by radial scars which are benign but grow in a tissue environment favorable to cancer cells. The radial scars hide the nearby breast cancer from imaging. A surgical biopsy (small lumpectomy) is usually done so that a pathologist can examine enough tissue to make sure no breast cancer cells are present.

My AD was treated under an older protocol of observation by mammography. After two and a half years of clear mammograms I developed osteomyelitis of the mandible. The oral surgeon told me that this jawbone infection meant there was cancer somewhere. Sure enough I had a 3.2 cm IDC tumor with multiple radial scars in the margins and a positive lymph node. Originally it probably was DCIS, noninvasive and stage 0, but it grew into a stage 2 invasive tumor over that time.

It’s disappointing when you are told you need more procedures after a benign biopsy but my experience explains why this newer protocol is followed. It may still come back as benign but it is better to be safe than sorry. Let us know how it turns out. All the best.

gdlktt86

thanks for sharing your story @maggie15 sorry to hear you had to get your diagnosis that way but I am glad you were able to get under control.

Appreciate the encouraging words, I guess I’ll do more tests and see there those take me.

Really thought the benign biopsy would be the final step in my journey but looks like this would a longer game so I am trying to prepare myself better.

maggie15

Hi @gdlktt86, Radial scars are rare so your situation is unusual.. There is still a very good chance that further testing will give a benign result. Take care.

emmay92

Hi @gdlktt86

I am sorry you are on this roller coaster at this time of year and at this age you do not expect to have such issues.

I have gone through the same as you this year (age 32), I went for a concern on my right (which was clear on imaging), but they found AD on my left. Similar to you with the works of testing that followed, only difference I had the Mri before the biopsy.

AD can be caused by benign or malignant changes and if it is a radial scar the issue is they mimic malignancy on imaging so the radiologist cannot tell which it is, plus radial scars can also have atypia or cancer.

My Mri result showed abnormal enhancement further adding to the concern for cancer. This upgraded to Birads 5. However, both surgery and biopsy did not show any malignancy, despite ticking all the boxes.

My surgeon said with the radial scar on biopsy result that it could be observed and re-imaged in 6 months, or surgery (wide excision biopsy) straight away, I did not want to go through the imaging process again and due to the younger age my surgeon recommended surgery.

Also with core biopsy they only take such a small amount, hence a larger biopsy in open surgery can give more accurate results & ensure nothing is missed.

So go and get your MRI done and make an appt with a surgeon who can explain everything to you, better to be on the safe side and make sure nothing is missed.

I wish you all the best for positive results, make sure you look after yourself, it is such an emotionally draining process to go through and reach out for support if you need it.

gaudys

Hi

I will advise you to see the surgeon . It made a difference on my case . I spent a year doing different diagnostics tests and all of them , including an MRI were negative . I ended up having IBC and it was caught by the Surgeon. Hope it is not your case , though.

gdlktt86

@emmay92 thank you so much for sharing your story and I am so glad your results came back benign.

How did your surgeon identify the AD is radial scar? Did you do a core needle biopsy after MRI?
Sound like not all surgeon insists on taking out radial scar as a standard procedure.

My case is a bit more tricky, my biopsy result does not show radial scar. And recently I did my MRI the results came back ok (no enhancement). So nothing can really explain the AD on my mammo. I have an appointment to talk to the surgeon team and will see how they’d advise.

Thank you again for your encouraging words! It is very emotional draining to be in this waiting stage, hopefully I can get clear and settling explanation soon and can start with whatever next steps the surgeon team recommends.

Take care!

gdlktt86

@gaudys thanks for your comment. I am so sorry to hear you are experiencing this but glad that your surgeon caught it so you can start the treatment (rather than later).

did you also have benign biopsy and MRI results? If so, how did the surgeon caught the IBC?

gaudys

Hi , hope you are doing well

I had a negative MRI . My 3rd US showed a suspicious area , and I underwent a biopsy that came back positive

emmay92

Hi @gdlktt86

What was the result of your core biopsy?

That is great your MRI showed no abnormal enhancement. Although if it was a radial scar do not always enhance.

Have you had your appointment with the surgeon?

I hope you get some clarity after meeting the surgeon.

I had my MRI first then core biopsy and followed by surgeon & Wide local excision. Mine showed the radial scar on the core biopsy at 1/3 but at 1/5 (more distortion) was benign changes.. at surgery they found 2 separate radial scars along with a long list of benign changes (florid usual ductal hyperplasia, PASH, sclerosing adenosis, apocrine adenosis, columnar cell change, columnar cell hyperplasia, fibrocystic change, duct ectasia, benign calcifications)

My concern is my MRI did enhance abnormally and the distortion was seen on both Mammo and US. Then final pathology showed the radial scars extended to the margins, which leaves me hoping nothing was missed as cancer can be at the periphery of radial scars apparently..

Oh such worrying and anxious times, I hope you are taking care of yourself and have good support around you :)

gdlktt86

@gaudys thanks for sharing your experiences. Did you also have architectural distortion to begin with? Sounds like you did MRI first then repeated US - did your doctor explain why repeating the US if your MRI is benign?

gaudys

hi

I did not have architectural distortion. I had a flat nipple and some decoloration @ my breast skin

gaudys

For almost a year all my tests were negative, US , mammograms and MRI

gdlktt86

@emmay92 thanks for sharing details about your experience!

I feel like doing MRI first then biopsy makes more sense, like what they did in your case. Was your biopsy guided by mammo or MRI? And what made your surgeon suggest you need surgery to take it out - because your biopsy result came back as radial scar?

My core biopsy result came back as Fibrocystic change and adenosis; no atypia or malignancy. and my radiologist believes it is discordant with the AD on my mammo, hence sent me to MRI.

Strangely the MRI did not see the AD or anything correlate to it hence it came back as benign.

I got a surgeon consultation through my care team( the breast center I am with have high volume so patients normally can’t directly talk to surgeon unless the team decides you need surgery), and they recommend redo the mammo in a few months. But it opens up more questions, like what caused the discrepancy between my mammo and MRI - why mammo shows AD and MRI did not. Still trying to follow up and get my clarity.

gaudys

My biopsy was US guided . It came back as a small tumor ( malignant) . Im getting chemo , currently on my 9th session out of 16 , then Surgery. Due to skin decoloration it was classified as Inflammatory Breast Cancer . It is localized on my breast 🙏🏼

emmay92

Hi @gdlktt86

I understand how you are feeling with then lack of clarity & I hope you get answers soon.

Can you go private to see a surgeon sooner and get another opinion?

What country are you in? I am in Australia and here if pathology shows radial scar they still as common practice remove radial scars or observe closely with imaging in 6 months time.

also if the radiologist deems the results and imaging as discordant then they may be more likely to do surgery, more imaging or even do another biopsy.

because radial scars can have cancer occurring near or with it and also are associated with atypia that is why they are commonly removed. Core biopsy only removes a small amount of tissue so there are always chances the whole lesion was not removed in the core biopsy (unless it was really small).

Sending positive thoughts your way x

gaudys

thank you 🙏🏼

Im in Miami . My treatment protocol has been set up . 16 chemo then surgery. Im surprisingly in peace . Taking one day at a time .

Hope you soon get some clarity

gdlktt86

@emmay92 i am in the states. And this is my second opinion doctor. It’s supposed to be one of the top BC center in the states, so I am kinda leaning towards their recommendation which is redo imaging in a month or so and compare.

My original hospital where I did mammo and biopsy insisted on surgery regardless of if I am doing or not and what the MRI result is, and there are quite a few discrepancies in terms of interpreting my results and situation within the care team. All these make me feel a bit unsettled and uncomfortable continuing care with them.

Although I might still go back if I decide I eventually want to do surgery, my second opinion team seems to be more reliable and more experienced. They are a research and academic institute so their researches are essentially ‘setting the new guidelines on BC diagnose and treatment’ vs my first hospital follows existing / might be out dated guidelines and tends to do a lot more surgeries.

Still feeling a bit unsettled given how this is progressing, trying to calm myself down and hoping to get more clarity from my current team on the risk level now after MRI.

sending good thoughts your way!

gdlktt86

@gaudys it’s so frustrating to get all benign results then out of a sudden you get diagnosed with BC. I can not imagine how stressful and mentally draining that would be.

You are so brave and inspiring. I’m sure you’ll get through this just fine and my thoughts are with you!