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Architectural distortion but nothing on ultrasound

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I’m 35 with a history of cysts in my left breast. I noticed a new more stretch marks and what looked like a dimple a few weeks ago. My doctor scheduled me for a diagnostic mammogram and ultrasound. The 3d mammogram found an area of “architectural distortion and two well circumscribed masses”. The ultrasound showed 2 small cysts (not surprised) but nothing to correlate with the AD seen on the mammogram or the dimple. The soonest they could get me in for a stereostatic biopsy is May 8th. The radiologist came in and rescanned the area with the US probe herself to confirm nothing was there. She said she thinks it’s a radial scar, but could be a normal process of ruptured cysts and fibrosis (I have dense breasts). She said the only way to tell a radial scar from cancer is through a biopsy. I’m terrified! I’m convinced there’s something wrong. Anyone else have something similar (distortion on mammogram but not ultrasound)? What was your experience?

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  • maggie15
    maggie15 Member Posts: 858
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    rhody_mia, I had the same thing happen to me. Radial scars are benign fibrous tissue caused by inflammation but they grow in an environment that is favorable for cancer and can hide it. Radial scars are uncommon so they are not studied as much as other breast lesions. When my AD showed up on a mammogram I was put on a now outdated surveillance protocol. Two and a half years later suspicious calcifications showed up in the same location and it turned out to be a 3.2 cm tumor. My surgical pathology report showed numerous radial scars in the margins which explained why it had not been seen on imaging. My surgeon's opinion was it had been growing there all along. The new protocol for AD is to biopsy so that if there is something concerning it can be dealt with early.

    From the limited small studies out there it seems that the chance of malignancy is variable. Dense breasts are less likely to show a problem on biopsy. There are many people who get a benign report who are no longer on this site so those of us posting are not the norm. Try to keep busy so you don't stress out too much while waiting. I hope you get a benign result. Let us know how it turns out.

  • moderators
    moderators Posts: 7,913
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    maggie15, great response! rhody_mia, we understand the worry, but it sounds like you're in good hands. May 8th is in a week. We hope you can distract yourself this week and just wait for them to do their diagnostics. As Maggie says, there are more who get a benign than malignant! We're here for you.

  • rhody_mia
    rhody_mia Member Posts: 4
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    I’ve also read several recent studies showing that no ultrasound correlates for AD are usually benign, but biopsy to be sure. If it’s a radial scar I’ll have it removed due to risk, but I’m really leaning into the research. I’ve seen a range of 18-30% chance of malignancy without an ultrasound finding. Higher than the 2% birads 3 threshold but I’m glad more research seems to be going on since these distortions have become much more common with tomosynthesis

  • rhody_mia
    rhody_mia Member Posts: 4
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    maggie15, I’ve spoken with my doctor and my mom’s former nurse (mom passed a year ago, kidney failure not cancer) and I feel a little bit better. I got a great report on the radiologist who read my results and re-did the ultrasound. Apparently she’s “the best” or one of them in my state and she’s “seen everyone’s breasts at this point” (that gave me a good laugh). If she thinks it’s a radial scar it probably would be, personally I’d like good ol’ fibrocystic changes which was also an option mentioned. I really don’t want an open surgery or lumpectomy this summer. I’m wondering if vacuum excision would be an option for small lesions without atypical findings.

  • maggie15
    maggie15 Member Posts: 858
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    rhody_mia, Vacuum excision has been used in the past but they found that it didn't remove enough tissue to check for cancer nearby. Radial scars themselves are not a problem but there is that 18-30% chance that there is a malignant tumor hiding in the area. Based on my experience I would recommend the open excision or lumpectomy. AD showed up two and a half years before there were other symptoms that diagnosed the tumor that had been hiding there at my first callback mammogram. The tumor ended out growing to 3.2 cm and the cancer had started spreading: lymphovascular invasion and one positive lymph node. Because of this I had more aggressive radiation treatment and ended up with an uncommon but adverse side effect.

    My lumpectomy itself was not too bad. I was back to work five days later. There were some restrictions on vigorous activity for several weeks but the pain was tolerable (and probably would have been taken care of by NSAIDS which I can't use.) My breast surgeon was experienced in oncoplastic techniques and I had an excellent cosmetic result. Your excision would be smaller than mine so the surgery would probably be easier.

    If you have summer vacation plans schedule the surgery after them. Right now it's not an emergency that has to be taken care of as soon as possible. Hopefully pathology will find nothing that needs further treatment but it is better to be safe than sorry.

  • rhody_mia
    rhody_mia Member Posts: 4
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    I’m 35, single, incredibly vain with a history of body dysmorphia. I have also had incredibly traumatic experiences in hospitals and with surgery so I’d much prefer not to unless absolutely necessary due to proven malignancy. Vacuum assisted stereotactic biopsies using 11 g or larger needles have an upgrade rate on average of 3% or less according to studies published within the past 5 years. This is what I will be having and the system being used on me uses 9 gauge, which collects even more material than an 11. 7’s are cited in literature as being used for excisions. Vacuum excisions are also the standard of care in the UK for small RS without atypical cells found. Previous studies show using US guided biopsies with smaller needles like 14 G tend to miss atypical cells at the periphery of the lesions, likely leading to a higher upgrade or missed malignancy rate. This is especially the case if calcifications were also seen on imaging and not completely removed during the biopsy, or there’s an associated ultrasound correlate found. I’m very sorry if this is what happened to you because 3.2 cm certainly does not pop up overnight or even on 6 month follow up. There definitely needs to be better research on RS and AD, as their incidence has increased with the increased use of DBT/3D mammography leading to extensive surgical intervention on benign lesions with low rates of upgrade when using modern methods and techniques as outlined in literature.

  • maggie15
    maggie15 Member Posts: 858
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    Radial scars are pretty rare (.09% of mammograms) so not much research has been done. I could find only four rather small studies where the upgrade rate ranged from 0 - 70% and was most often DCIS. I was having mammograms at my local rural hospital where they were following an older surveillance protocol but I travelled to a large hospital for treatment. My tumor margins contained numerous radial scars, considered clean since RS are not malignant. That concerned my surgeon some but not enough to recommend a mastectomy. She said RS's that remain could hide a local recurrence so I have a breast exam from an expert every six months. In her opinion that would find anything before my mammogram.

    You have done your research and need to do what is best for you. Also, you and your doctors will be alert to any changes in the future. I hope you get a benign result and can enjoy your summer. All the best!