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

Posted by gardenfairy @gardenfairy, Nov 30, 2023

My breast MRI last week showed a very large lesion with clustered ring enhancement and washout that radiologist defines as "suspicious for malignancy", but absolutely nothing showed on subsequent mammo and ultrasound. My surgeon is concerned it could be invasive lobular cancer or lobular cancer in situ. Has anyone been diagnosed with similar lesions based on similar testing? Thanks!

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I had the pet scan after the mammo did not show the cancer and the ultra sound missed the cancer
Apparently when tech does swipe with wand they do not go over every inch. The mri and pet show cancer and the ultra scan showed the cancer when I literally pointed to the spot for ultra sound. My first follow up in April will do an ultra sound and my insistence of a mri

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I had a “ normal” mammo and US having gone in with a symptom! Symptom persisted and so did I… MRI done 2 months later and found 2 tumors , 3 and 4 cm in same breast. Two nodes also affected but next 5 in the “ transportation” line were negative. Unilateral mastectomy one month later … and almost 2 years ago,

I now get a mammo and MRI annually spaced 6 mos apart. I have one dense breast left and I will never believe a mammo nor US again!

DENSE BREASTS = MRI

Symptom: Due to the size and placement of one tumor, a blood vessel occlusion occurred when I raised my arm ( applying deodorant in a mirror one morning) causing my areola to lose its pinkish color until I lowered my arm ( and released occlusion). Now I am always across a mirror when I apply deodorant as it serves as a breast check. It and my persistence likely saved my life!

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@ldrutter

6 month MRI f/u
Hi! I am 46 with history of hysterectomy. I’m not on any hormone treatments. I have not been diagnosed with breast cancer, but I have had 2 left breast biopsies, both which came back Fibroadenoma. I go back at the end of December for my 6 month MRI f/u. The first MRI had allll the characteristics of cancer….washout, irregular borders, etc…. BIRADS 4. My lymph nodes were “fluffy” on the left side as well, but they weren’t biopsied because they looked “fine” on the ultrasound. Has anyone went back for 6 month f/u MRI, only to find out you do have breast cancer?? I have a lot of aches in my left arm and breast area that has been going off and on since April 2023. My heart has been checked, so it’s not that. Also, has been progressively getting worse in the last 6 months. Has anyone else have this happen? Thank you so much!

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Thank you for sharing your story. It is so hard to make sense of differing opinions and test results. I wanted to share with you my experience last week during a conversation with my surgeon, following my mammo+US, in the lead-up to a MRI-guided biopsy. I commented that the axillary lymph nodes on US were fine. He explained, however, that you can still have cellular metastasis in lymph nodes that will simply not show up on ultrasound. My surgeon and the radiologist automatically recommended MRI-guided biopsy for a BIRADS-4 on my annual MRI, which is always done with and without contrast. I'm so glad you are about the get your MRI follow-up. Do let us know how that turns out. Praying for the best outcome.

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@anjalima

I had a “ normal” mammo and US having gone in with a symptom! Symptom persisted and so did I… MRI done 2 months later and found 2 tumors , 3 and 4 cm in same breast. Two nodes also affected but next 5 in the “ transportation” line were negative. Unilateral mastectomy one month later … and almost 2 years ago,

I now get a mammo and MRI annually spaced 6 mos apart. I have one dense breast left and I will never believe a mammo nor US again!

DENSE BREASTS = MRI

Symptom: Due to the size and placement of one tumor, a blood vessel occlusion occurred when I raised my arm ( applying deodorant in a mirror one morning) causing my areola to lose its pinkish color until I lowered my arm ( and released occlusion). Now I am always across a mirror when I apply deodorant as it serves as a breast check. It and my persistence likely saved my life!

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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.

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@gardenfairy

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.

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Advocate Advocate Advocate And PERSIST!

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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.

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@mitch3194

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.

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Sorry to hear of your current situation as well as the history in your family.

I do not trust mammo nor US either. Both missed 2 large tumors in one breast! Fortunately I had a symptom and persisted until an MRI was done 2 mos. Later. Boom! I was called back in 2 hours… IDC and 2 nodes affected. Unilateral mastectomy was performed Feb. 2022! I get an annual MRI now … as well as a mammo which I do not even believe in my case but doc insists.

REPLY
@gardenfairy

Thank you for sharing your story. It is so hard to make sense of differing opinions and test results. I wanted to share with you my experience last week during a conversation with my surgeon, following my mammo+US, in the lead-up to a MRI-guided biopsy. I commented that the axillary lymph nodes on US were fine. He explained, however, that you can still have cellular metastasis in lymph nodes that will simply not show up on ultrasound. My surgeon and the radiologist automatically recommended MRI-guided biopsy for a BIRADS-4 on my annual MRI, which is always done with and without contrast. I'm so glad you are about the get your MRI follow-up. Do let us know how that turns out. Praying for the best outcome.

Jump to this post

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.

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@anjalima

Sorry to hear of your current situation as well as the history in your family.

I do not trust mammo nor US either. Both missed 2 large tumors in one breast! Fortunately I had a symptom and persisted until an MRI was done 2 mos. Later. Boom! I was called back in 2 hours… IDC and 2 nodes affected. Unilateral mastectomy was performed Feb. 2022! I get an annual MRI now … as well as a mammo which I do not even believe in my case but doc insists.

Jump to this post

A biopsy was done on one lesion the MRI shown, and came back benign. The MRI had several concerning things that shown up though. Once being lymph nodes on the left side that was not biopsied because they looked “fine” on ultrasound. I just feel like something is not right. I have a lot more pain/aches that have surfaced in the last 6 months.

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@ldrutter

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.

Jump to this post

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

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