Has anyone had MRI suspicious for malignancy but negative Mammo + US?

Mine all started when I felt a large lump at the end of summer, which I was unsure of as it felt part of my chest wall. There is a history in my family - My Mom died from Breast Cancer at 63 and our daughter was diagnosed with Triple Negative Breast Cancer at 25 years old. I was scheduled for a Mammogram shortly after, and nothing showed up. I told the technician to feel it, and she confirmed it was a lump. Immediately, they scheduled an Ultrasound, and the doctor said it looked like a small lump, a few mm. I said that's weird because I am feeling something a lot larger. He scheduled me for an urgent biopsy. The doctor (using the UC) told me he was seeing a lump more like 1" in size and 2 lymph nodes looked suspicious. I said (2nd time) that's weird because I feel something a lot larger. The doctor asked me to show him the size with my fingers which I did about 2 1/2". Nothing was said. The pathologist's report came back and confirmed it was cancer. The Oncologist surgeon said that she recommended a lumpectomy rather than a mastectomy so that I could keep the "girls" and that it was a slow-moving cancer. I had the surgery about a month ago and just met with the surgeon. It turns out, they removed 29 lymph nodes and a lump that was 3 1/2". and they were unable to get clear margins. I asked the doctor how it could be 3 1/2" and spread to 2 lymph nodes if it was slow moving. She said we think you have had it for 5-6 years. I was in such shock, the doctor said they would like to do a mastectomy ASAP and left, I just couldn't even think of what to ask next. When I got into the car, I had a major anxiety attack. I went from the doctor making it sound like it was "a walk in the park" to the possibility (I am thinking) of a double mastectomy. I called the nurse with my questions, and she apologized and said that surgery had been postponed, and they would like me to meet with the oncologist to discuss treatment first.
My concerns now are how deep the lump was, is the chest wall infected, and what the possibilities are that the cancer can travel to other breast and organs. Never once was I offered an MRI. I no longer trust the Mammogram or the Ultrasound. These tests might be able to detect the lump but not the size or the position.

I have had mammo and ultra sound because of history of ruptured implants since 1994. The silicon went under arms into organs. I had mris too and stopped 3 years ago with mris because the dye is not good for you. In 22 I had a mammo and ultra sound in Dec. Said negative for cancer. In June I felt lump in left breast 12:30 6cm from nipple. Had mammo and rechecked ultra sound. Mammo negative for cancer. Ultra sound initially did not show cancer. I pointed to lump and they found ìt to be cancer. The mammo did not see 11mm cancer at 12:30 and 6cm from nipple. I had biopsy and mri which showed 9mm of IDC. When they did surgery to remove it was 13mm. I asked if grown my doctor said no it was like cobwebs. It was not in my lymph nodes nor in my margins. In April my doctor wants me to have a mammo and ultra sound to check my breasts. Since the cobweb cancer I had does not show up on mammo and it was missed on ultrasound in Dec. 2022, probably, I am insisting on an mri and ultrasound and making sure the ultra sound goes over entire breast. I was so upset because I have always thought the mammo would catch breast cancer but apparently not the cobweb type I had. I am lucky I felt the lump and insisted on a mammo and ultrasound. You have to be your own advocate. I am having an mri in April and detailed ultra sound over every inch of my breasts because I do not trust just having a mammo.

Glad you are pushing for the right imaging. I came across this article by Johns Hopkins Medicine that speaks to best practice use of ultrasound...and it's not diagnostic without other signs. https://bit.ly/41lRzDz Good luck in the spring!

What was the BiRADS on your initial MRI? That would help guide a decision on biopsy or not. It is well known in breast radiology research that malignancy and fat necrosis can mimic each other on MRI. I had washout and clustered-ring enhancement, both of which characterize malignancy AND fat necrosis. So, enhancement rate, distribution pattern and morphology can be similar in both, such as your hypoechoic, washout and rapid enhancement. My Nov '23 MRI was BiRads-4 and my report did say suspicious of malignancy but could consider other etiologies such as fat necrosis. Biopsy was recommended and the biopsy last week did in fact turn out to be fat necrosis, but could have gone the other way, too. There are specific criteria for evaluation of lymph nodes on MRI such as 3-D measurement, border characteristics etc. I guess I would wonder what "fluffy" means. I had some concerning lymph characteristics on MRI last December, this year normal. There are a lot of physical and environmental variables that effect lymph nodes at any given time, such as immune responses, timing of COVID vax to MRI, and myriad of others. My own experience with the lymph nodes is that they wouldn't biopsy nodes unless high correlation with breast lesion, and more generally done during a lumpectomy. Sometimes these varying medical opinions have necessitated my getting into the weeds, educating myself on the research, and asking specific questions of the medical team so I'm more comfortable with their evaluations. In the lead-up to my biopsy, I did a ton of reading and this website was particularly helpful for the plain language they use. Disclaimer: I'm an ex-RN. This article is about fat necrosis and I hope it's helpful to you. In addition to Advocate, Advocate, Advocate...I would also add Question, Question, Question (who, what, where, when and WHY... on everything!) https://ajronline.org/doi/10.2214/AJR.07.4051

I was given BiRADS 4 for the MRI. The article was very eye opening!

Thank you so much! With my last MRI very concerning, I am hoping to do a MRI guided biopsy if the next one is concerning, as well. A biopsy was done on one lesion which came back as a necrosis. Lymph nodes were not biopsied even though they were suspicious on MRI. An ultrasound was done a few days later and the lymph nodes were just “fluffy” and didn’t “look” concerning according to the other radiologist.
I just don’t know who to believe because no one can come to an agreement! I would think if the MRI has characteristics of cancer (hypoechoic, washout, rapidly lighting up, etc…) then more would’ve been done.

It did not show up with mammo or ultrasound. Ultrasound has to be right on top of the cancer
It showed up with mri
Again thank God I felt the lump or I would have gone another year without fi ding the cancer.

Glad it was helpful. As a regular consumer of doctor visits, breast exams, scans, biopsies, and lumpectomies…I’m struck by how the care of women, their breast health , and frankly, their lives, varies so dramatically from community to community even in the face of solid research and experience. I have many more academic articles bookmarked that I’m happy to share. The standard of care in our region is BIRADS-4 requires biopsy…soon.

So sorry for what you went through. Good for you for persisting in getting the scan you needed. We all have to be our own best advocate, for sure. I'm very grateful for the many research and general information articles on the web that have helped me ask the right questions. It seems a skillful use of combination of tests are the standard of care, according to my own surgeon who specializes in breast conditions. What I'm discovering with my annual testing and BIRADS-4 this year is the fact that ILC and LCIS don't generally show up on mammo or ultrasound, making MRI an even more critical tool in our breast health management. I came across a tertiary center doctor on YouTube actually showing scans of dense breasts and how certain cancers are missed, especially on mammo.

I fully agree. With all the fund raising and donations they receive, you would think they would start with having MRI available for early detection rather than the useless Mammogram and US.
I have never heard for the BIRAD? Is that used before you are officially diagnosed with Cancer?