Over 60, Birads 3 and a Story you Can’t Believe
I’m looking for input and advice. No prior history for myself. Mom diagnosed at age 90 with + - - grade 3 aggressive cancer. Died of unrelated causes before diagnostic work up completed.
For me - Screening mammo at the end of October…Birads 0, new bilateral focal asymmetries both upper outer quadrant.
Diagnostic spot compression views and left side ultrasound 2 mid-November. Birads 3, come back in six month for right side only.
Here’s where it gets interesting…decided I did not want to wait given my age (over 60), very late menopause and family history. (Mom - breast cancer, maternal grandmother died of pancreatic cancer and one maternal uncle died from colon cancer. ). After some initial issues (PCP on maternity leave) finally talk to OB/GYN’s nurse who says ‘right side’ follow up. Pointed out ultrasound was done on the left. The nurse tells me she’s going to talk to radiology and acknowledged that the report is unclear.
I placed a written request for the actual reports with the hospital. It’s obvious from the reports that they have mixed up the left and right side. The ultrasound for the left breast talked about the conditions that they found in the right breast. Put in a written complaint with a radiology group who also acknowledges the mixed up sides, but declines to correct the report (it’s only laterality). At that point, I decided to change imaging groups.
The new radiologist accepted images from the previous mammogram and ultrasound but declined to give an opinion on them. They suggested I get an appointment with a breast surgeon. Initial appointment was with a PA, who also thought Birads 3 and said no way they would biopsy She then called me and said they were going to bilateral diagnostic ultrasounds because the initial report is such a mess. The post visit notes were amended to say that both areas were amendable to biopsy.
My ultrasounds are next week. Obviously, my anxiety and stress are through the roof. My thought is that if I can get biopsies on both sides that I should do it. Everything I’ve read online seems pretty clear that I really should never have been Birads 3 due to age and family history. It probably wouldn’t be so upset if it hadn’t been both sides. And I shudder to think what would’ve happened if I hadn’t pushed back. I’m super frustrated about feeling like I’m being taken seriously. What is the point of pushing the message “get a mammogram” if they aren’t going to be prepared to address the results?
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Hi @frustratedandscared, I'm sorry you ran into problems with your radiology department. Even when there are mistakes in your medical record it is very difficult to get them corrected because they are legal documents. The most they will generally allow is adding an entry stating your concern. I've had this happen way too often and it makes care by the next provider problematic.
Radiologists do make mistakes. I had a callback and was given a Birads 2, the same score which was given on my next two mammograms. After a tooth extraction I developed an infection that would not heal. The oral surgeon biopsied my jawbone. When the result came back as osteomyelitis (bone infection) I was relieved until the oral surgeon told me that condition in the jaw only occurs if you have HIV or cancer. Because of the callback I went for another screening mammogram which showed calcifications and was called for a stereotactic biopsy the next day. That radiologist told me I had a lump deep in my breast and needed a core needle biopsy instead. She apologized for the other members of her practice which contracts with the small rural hospital saying that the occasional mistake is made but three in a row in highly unlikely. The radiologist who performed the needle biopsy wondered aloud who had read the previous two mammos and then in surprise said, "Oh, it was me." Needless to say I travel 100 miles each way to a big city for care.
I'm glad you advocated for yourself and found another provider. The protocol for Birads 3 is rescanning in six months. A biopsy is done only for Birads 4 or 5 since its value depends on checking the tissue in an irregular spot seen on imaging, not age or family history. I was surprised to learn that the vast majority of women diagnosed with breast cancer (80 to 90%) have no family history or genetic mutation.
I hope your ultrasound finds nothing to worry about. All the best.
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I wanted to give an update, mostly in case someone else in my shoes sees this post later. I had my ultrasounds done at the new facility. They look very reassuring, but I am getting bilateral biopsies in January. This is the first time I feel calm since this whole mess started, because I will get a definitive answer. As women get older, new focal asymmetries have a higher risk of cancer than they do in younger women. I wish I’d never Googled that, but it’s definitely more than the 2% risk that is the standard for Birads 3. When you add in my family history, it’s just scary. I’m very hopeful this will be benign, but for me it is better to know now than wait.
There is one other thing that I can’t stress enough. If you aren’t happy with your care, get a second opinion. Every thing about this second facility has been better than the first. I was able to see the radiologist in person and he spent time answering my questions. There was one thing where he didn’t have an answer and he called me before I was even out of the parking lot with the information. No matter what happens, I feel secure that the care I get will be appropriate. There is no way that I could have said that if I’d stayed with the first radiology group.
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We're so glad you're feeling a little better with the ultrasound results, and feeling confident in your new radiology team. We couldn't agree more that getting a second opinion when things feel off (or even when they don't!) can be beneficial in the knowledge that you have more than one professional weighing in on the situation. We're so glad you've advocated for yourself!
We hope your biopsies come back benign — please keep us posted!
—The Mods
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I haven’t followed up with the surgeon yet, but here it is:
DIAGNOSIS A. RIGHT BREAST AT 10:00, STEREOTACTIC-GUIDED CORE BIOPSY: - BENIGN BREAST PARENCHYMA WITH MICROCYSTS AND STROMAL FIBROSIS. - NEGATIVE FOR ATYPIA AND MALIGNANCY.
B. LEFT BREAST AT 2:00, STEREOTACTIC-GUIDED CORE BIOPSY: - BENIGN BREAST PARENCHYMA WITH RADIAL SCAR, APOCRINE METAPLASIA, USUAL DUCTAL HYPERPLASIA (UDH), AND CYSTS. - NEGATIVE FOR ATYPIA AND MALIGNANCY.
A little worried about the left side.
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@frustratedandscared, It’s good that nothing malignant was found but I would definitely ask the surgeon about the radial scar. They often do an incisional biopsy to remove them since even though they are benign they can hide nearby malignant cells. The upgrade to malignant is low without atypia. However, in my experience the architectural distortion caused by radial scars was just noted in my medical record and I ended up with stage 2 IDC in that location two and a half years later. All the best going forward.
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@maggie15 , I talked to the radiologist this afternoon. She said that for some reason she’s had a lot of radial scars lately, but the upgrade rate has been low. I had a pretty aggressive 12 core biopsy with. 9 gauge needle, but I’ll still be following up with a surgeon.
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With your family history of the types of cancer you described, has your onc or OB-GYN mentioned the possibility of genetic counseling? Everyone's heard of the BRCA 1 & 2 mutations, and most here have heard of CHEK-2 and PALB. But there is a constellation of mutations known as Lynch Syndrome—which raises the risk of not jusr breast & reproductive cancers but also pancreatic, stomach, colorectal and certain forms of melanoma—as well as benign skin growths called sebaceous hyperplasias. Early on, because of my ethnicity (Ashkenazi) I was tested for the BRCA mutations, and was negative for both. But 5 years later, when I was diagnosed with ocular melanoma (which is genomically different from cutaneous—skin—and anal & vaginal mucosal melanomas) and mentioned I had a few sebaceous hyperplasia, my onc had me tested for Lynch syndrome and a subset of it—fortunately, negative for those too.
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@chisandy I previously had a couple of D&Cs related to menopausal issues. At that time, I talked with my surgical GYN about Lynch syndrome, but I didn’t qualify for testing. It’s startling to me that you mentioned OM, though, because I have a nevis in the back of my eye - stable, but I go for annual monitoring. I’m thinking I might have to step this up to every six months, and maybe do a consultation with an oncologist. I have seborrheic keratosis as well.
Right now, I’m just overwhelmed with fear and trying to take one day (really one hour) at a time. I feel like I’m standing in the middle of a four way intersection, waiting to see which truck runs me over. Luckily, I was already in therapy when the breast issue came up. I’m starting to feel sorry for her having to listen to me, though. 😉
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I met with my surgeon yesterday. If all goes according to plan, I’m getting bilateral excisional biopsies at some point in the next couple of months. More waiting, more worrying. So much worrying.
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@frustratedandscared, It's good that you have a referral for the bilateral excisional biopsies. The waiting is so frustrating but that seems to be the norm because of more patients needing care and fewer medical providers to see them. Specialization within medical disciplines also makes it harder to schedule an appointment. Hang in there and let us know how things turn out. Take care.
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My excisional biopsies are scheduled for the end of March. It will have been 5 months from my original mammogram to a definitive biopsy. One of my lesions was just under 2 centimeters on the original mammogram. If it’s cancer, I’m screwed. I’m still trying to be hopeful because my vacuum biopsy was negative, but the stress is driving me crazy.
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