Dense Breast Tissue Can't Be Seen On Mammo
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Jons_girl:
It's visible on the first mammogram but they didn't recognize it. This lead to it being misdiagnosed as normal breast tissue for 2 years. I have dense breasts, but at the time I didn't know the extent of the density or that they were dense enough to warrent more imaging...I thought they would tell me if that were the case but they didn't. I knew nothing about reading breast imaging at the time.
After I noticed a distortion in the shape of my breast where the lump was about two years later, I decided to have it re-imaged. I woke up that morning and almost canceled the appointment because I was tired and was still thinking it was probably normal breast tissue and the distortion was from sagging and deflating due to age/hormone shifts making the lump more apparent, but I thought "I already had the appointment so I might as well go to it".
By this point I had learned one thing about breast ultrasound images. Those horizontal lines are the layers of breast tissue. From my profession, I also knew what the shape of cross section of a malignant tumor looks like. They tend to jut upward, cutting uncontained through layers of normal tissue like a jagged boulder cutting through sediment layers. That is exactly what appeared on the second ultrasound.
They said the first mammogram was normal because it didn't show microcalcifications, but that is not a reliable indicator of lack of malignancy or malignancy because some malignancies don't have them and some benign breast lesions do. And the first mammogram actually does show some microcalcification if the contrast is adjusted. If they had taken me back in to the reading room at the first mammogram and gave me a brief primer on what I was looking at as far as orientation, I could have pointed out the lump to them. It was actually right next to the marker.
At the time, it measured a little less than half a centimeter at it's largest dimension on the mammogram.
By the time I was actually diagnosed, it was over 2.5 centimeters and had grown itself a blood supply.
I have no idea how it was missed on the first ultrasound. I could only see the screen part of the time and had no idea what I was looking at that point so I don't know if they didn't recognize it or went over it too fast, had the probe at a bad angle or just couldn't see it for some reason or what.
Given the type I have, I don't know if the treatment would have been much different if it were caught the first time, but I think my long term prognosis would have been significantly better.
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WC3:
Thank you for sharing that info. Wow that is amazing! I am so sorry you had to go through all that! Wow.
It is so amazing to me how much is missed. I know they do their best to try to find cancer. Wish there was a perfect diagnostic, but I realize there really isn't.
tami
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When I was diagnosed they could see a mass on the right side via mammogram. My surgeon suggested an MRI on the left to make sure we weren't missing anything. I had dense breast tissue on the left side. The MRI showed an aggressive mass twice the size of the mass on the right side that was undetected by mammogram. Had we not done the MRI we would not have even known it was there. I thank God every day that my surgeon asked for that MRI.
When all of the imaging was done we found that I had a +/+/- mass (Invasive Ductal Carcinoma) on the right side and pre-cancerous calcifications (Focal Atypical Ductal Hyperplasia). And on the left side I had a +/+/+ mass (Invasive Ductal Carcinoma) with a group of pre-cancerous nodules (Ductal Carcinoma In Situ).
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hi oceanbum:
I never had mri. Only ultrasound. I’m pretty small breasted but I thought it would be good to have a baseline mri and have one yearly or bi yearly. My oncologist is on board with that I think since I chose no radiation or meds route. He is completely supportive of my decision due to the pathology of my tumor, size,etc. So I do more diagnostics more often. But don’t plan on having another mammogram. For me, those don’t wk. can’t see anything. I’m too dense breasted. So ultrasound and mri are the diagnostics i will have done. Plan to do them every 6 mo for awhile. Then yearly probably.
My question to you is...what they saw in yr left breast dcis, wouldn’t that have been similar to calcifications? Or can’t mri see calcification? I asked a breast center nurse about if they couldn’t see my tumor through my dense tissue on a mammogram, how could they see calcifications? She was telling me I should still have mammograms. I could see no reason to keep having them. I realize it’s the gold standard but they can’t see anything in my breasts because of my tissue. This is the way I see it so I was wondering if what dcis they saw in yr left breast could be calcification they missed on the mammo?
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I haven’t had the mri yet. My surgeon was cautionary because of the contrast. Apparently they don’t use gadolinium contrast in Europe anymore. She says it can build up in brain?
I’m seeing her associate another breast surgeon in her office now and following with her yearly with twice a yr ultrasounds. But she wants me to consider a supplemental test once a yr too. She said my options are: mammo (not my first choice), mri or a nuclear breast study. I forget what she called it.
So I’m thinking about all this. But I’m the meantime have manual exam by dr once yr and ultrasounds twice/year. I’m not going to onco dr anymore.
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I chose to wait on MRI. But may add them off and on down the road.
I’m doing ok tho.
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I was always a fanatic about yearly mammograms. I had had fibroadenomas over the years, NOT ONE of which ever showed up on a mammogram. I knew I had dense breasts. So this year I turn up with IDC, which on the 3D mammo was a “distortion.” Ultrasound picked up a 1.5cm mass that the radiologist was pretty certain was cancer. After surgery I ended up with a 2.5cm mass with one node involved. Grade 2. So being it’s a moderate grower, how long was that thing there, despite my yearly mammograms, the last five years 3D? I don’t even want to think about it. Oh, and my GYN didn’t feel it two months before. So I told my sister, who also has dense breasts...you might want to think about going beyond the mammogram
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Floral, I asked my MO if I could have an ultrasound this year because of dense breast and she said no. If the 3D mammogram picked anything up I would then have a MRI. 2018 the Ultrasound confirmed the mass in my left breast. I am going to check with my primary and see if she will order it. It shouldn't be this hard.
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WhiteBird - are you in treatment for breast cancer or supporting a family member with BC? If so, please go to My Profile and post your diagnostic & treatment specs. From your posts it looks like you are just trying to promote the site you're describing.
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Floral: I had wondered the same thing. When would my tumor have been found? They COULD NOT SEE my tumor on a 3D mammo!! Even WITH me feeling it!! I wasn't having mammos every year prior to my tumor however I did have mammos. And I wondered when it would have been found. Having extremely dense breast tissue, my trust IS NOT in mammograms. I realize they work great though for many women. But the rest of us who have heterogenous or extremely dense tissue.....I wish they would just admit that yes there needs to be other better options for us. And I believe for me....ultrasound and MRI is the only other answer right now.
Flashlight: If I were you, I would be getting a new MO. That is crazy they told you NO! Do you know if you have heterogeneous or extremely dense breast tissue? I believe in most states that have density laws, you have to fall in either of those two categories to be able to qualify for ultrasound or MRI for screening. That is how I understand the laws. In my own state....if you fall in either of those categories you have a legal right to have a ultrasound or MRI. Yes definately ask your primary doctor. No it shouldn't be this hard. But in this day and age....YES you have to advocate for yourself. Anything you want and the doctor says no you have to push for. It is sad but it is the way things are.
I wish you both the very best going forward in your recovery/healing. Have a wonderful weekend!
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My cancer was not found on a mammogram or ultrasound. There was no lump but I went to a surgeon for a second opinion for the discharge I had. Thank goodness I did. The discharge turned bloody (although any discharge is not necessarily cancer). I got an MRI and they thought they found benign ADH but when they went to take it out they found IDC. Thank goodness I had the MRI and surgical biopsy.
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I am going to be having a MRI in July. I have had pain off and on under lumpectomy and almost always pain when I sneeze. So my breast dr wants me to have a MRI. I probably should be having a MRI every couple yrs or so anyway. So I plan to have one next month.
Floral: How are things going with your recovery? I am so sorry you went through that experience. It is very frustrating. If you haven't already gone to this website it is a informative website I share with women who have dense breast tissue. www.areyoudense.org I hope all goes well in your recovery going forward.
Flashlight: How did things go when you talked with your primary doctor? I am not sure which state you live in but most states have laws now regarding being able to have another mode of diagnostic other than mammogram, so you would have mammo and another diagnostic too. In my state you have to be the highest two types of density....heterogenous or extremely dense tissue to qualify for another type of diagnostic. You may have a law in your state too. The website I posted above has a page that talks about breast tissue density laws. Or you can google that with your state name. I hope all goes well for your recovery going forward. We have to advocate for ourselves. No one type of diagnostic works for everyone.
VeeHow: Wow that is amazing what you have gone through! I hope your recovery goes well! I am having a MRI in July. I think I will be adding MRI to my diagnostics going forward, maybe having them every couple years or so.
Hope all is well with everyone! Have a great week!
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Hi Jons_girl, I actually changed my MO and now go to Penn Medicine. She ordered the ultrasound and 3D mammogram. I'm glad I made the change. She said as you age your breast become less dense.....I guess I'm not old enough yet!! Unfortunately, I now have breast lymphedema.
Hope things are going well for you in these crazy times.
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I had a scare about 12 years ago . . . I am 52 now . . . I had a large lump on my left breast at the base of my breast . . . I was told that I had dense breasts and it was a fibrocystic lump . . . no worries. Fast forward to last year, I find a lump the size of pea at the top of my left breast so far up it was almost on my chest. Our breast tissue goes all the way up our chest, I never thought about that. It was so far up that they couldn't catch it on the mammo . . . they found it on ultrasound. All I can say is thank God, every year from that time twelve years ago, I automatically had a mammo and sono done every year. Although, the year prior year to finding the cancer, I was too busy to get my mammo and sono . . . . I can't stress enough the importance of not missing mammos and sonos. My daughters are 21 and 23 . . . I am wondering when they should start being tested.
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Flashlight: Yes I have heard that density changes and gets less dense as a woman ages. However my mother who is in her 70s still has dense tissue. So I am not sure I believe that completely. Time will tell if I stay the same as far as density goes. Glad to hear you found a great MO! All is well here! Hopefully all is well with you as well! Happy 4th of July!
lleepak: Yes my lump was on the top of my breast fairly high up but when they put a sticker on it you could see the sticker in the 3D mammo film just not the actual cancer. It was missed on my mammo. Yes we even have tissue they check under our arms as well. My daughter is in her 20s too. Because of my cancer she now qualifies to start having screening early. She will be having yearly screenings...she had a screening I believe the year I had cancer. And I think every year after that. I pushed for it. Because my maternal grandmother had it twice and died from mets. my maternal aunt had breast cancer too. But no breast cancer genes, I had the testing. But because it seems to run in our family I want my daughter to be screened early. I hope your recovery goes well! Happy 4th of July!
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