Dense Breast Tissue Can't Be Seen On Mammo
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Regarding daughters and screenings- I was told that my little sister should begin yearly screening at age 25 using MRI only as a screening tool, not ultrasound or mammogram, but I would definitely check with a doctor on what the correct protocol is moving forward.
I had a mammogram and ultrasound 2 years before I was diagnosed because of a lump I found. I was 31, they told me I had dense breasts but not that mammograms weren't even considered effective under 40. The ultrasound results say they found a bunch of sub-centimeter cysts. No where on the reports does it mention the area of concern. As far as I can tell, they focused on another area of my breast even though I repeatedly told them it was somewhere else and they never saw on ultrasound what I was talking about. I had size 32d breasts so they weren't particularly large. They basically treated me like I was ridiculous for even being there because I was too young. So I considered what I had a cyst and two years later I was diagnosed with cancer. Hard to say if it was there because they went back and don't see anything on the scans but I'm pretty sure that this lump has always been there. No one who is treating me will say anything on if they think it was originally missed or not. I'm also sure that my age played a role in how seriously they were taking me and I didn't know any better than to question them (they didn't even recommend that I have any followup).
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Hi everyone...ultrasounds are good but the best screening tool for dense breasts are MRIs. Good luck to all
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dtad: I am trying to figure this part out.....I agree with you denseness of tissue is definately a huge part of missing breast cancer. My question is well if you are dense and very small breasted can ultrasound get a good enough look at the tissue or is MRI the only option that is best. I have a question out to a radiologist through a friend and am awaiting that answer. If any of you are friends with a radiologist or have an appt with one...can you also ask them?
I know if a person has larger breasts that is a factor in not being able to see quite as well the tissue with ultrasound and dense tissue also plays a huge role.....but if a person is small breasted like me....do I need a mri? That is my question I am pondering. I have a recheck appt in June and so thought by then I should have lots of answers by then to make a decision
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In the UK you don't get told if you have dense breasts or not. I know that in many parts of the states they have to tell you. I just had a follow up mammo and asked if they could tell me. No, I was told. But you get this information on the images, right? I said. Indeed they do but if they don't have to pass it on to the patient they don't. That is making me very grumpy! I'm about to write in to the radiology dept and get the full mammo report.
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I would like to see some documentation from a reliable medical source that ultrasound is ineffective on large breasts. I have never heard that and I can't find it anywhere in the literature when I search.
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Hi,
Just came across your post and can relate. I was DX back in late 2016--but my mammogram AND ultrasound came back completely normal, see you in a year. Yes, I have dense breasts, but shouldnt that be even more reason to make sure they are checked completely. When I had my Dr follow up, she examined me and we decided to try and push for an MRI. I had a very slight inversion in my skin, so it barely looked like anything. Once I had the MRI, they found my Stage IIB IDC. I still cant believe it most days that had my Dr and I not decided to push, I may be in much worse shape. Hopefully there is more awareness for 3D Mamms and or Ultrasounds for dense breasts, etc.
Hope all is well on your end!
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Tigio - I had the same experience except my tumor was 5-6 cm and they still couldn't see it by mammo or US. It took and MRI to see it. According to what I'm hearing from the docs is that it's a controverial subject in the medical world and the insurance world and that's what becomes the problem.
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NicolaSue: I'd highly recommend always getting a copy of your mammo report. Any radiology place will send you one, all it takes is a phone call usually. They will send it to your home. They even here in the states send a copy of the radiology dvd disk. So I actually got to see my mammogram with my own eyes! Very dense tissue.....it was amazing.
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MelissaDallas: I have heard that it is difficult to scan larger breasts.....more breast tissue therefore things can be missed. I think that is why some ultrasounds are missing things. From what I have been reading with the questions I have asked about this, the ultrasounds that were done that missed their breast cancer, it seems most if not all had what I would consider to be large breasts. I am a size A currently and my cancer was seen very obviously on a ultrasound.
So as far as documentation I doubt there is anything out there. Who knows, maybe there is?
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Tglio17: Thank you for sharing! Yes all is well on my end so far.....praying it will continue that way. Wow your story is amazing! That is awful they didn't see anything either on your ultrasound!!! Yes our situations do sound similar. Mine was so obvious on ultrasound though. I wonder why they missed it on your ultrasound!? 2 cm isn't that small. They should have seen it on ultrasound.
(soapbox warning, I am sorry for ranting! )
And yes you are right, having dense tissue is more of a reason they should be pushing for other diagnostics for pts to make sure they are cancer free. Makes me mad that happens to people! If I had not felt my tumor....when WOULD they have found it?? That is a question I wonder about. I had not been doing self exams, but I sure do now!! And they are telling women not to do them...that is what I heard. Or not to do self exams as often. I am thinking.....why not? That is just pure craziness!
They are pushing yearly mammos (which are useless for me) out to start at age 40. Why on earth start diagnostics at age 40?? Does something magical happen? I realize most young women have dense tissue....so maybe they figure by 40 they can see more clearly in a mammo. But for 40% of women like myself they can't see much of anything! And I am 50! So what about us, the 40%'ers?
I, my daughter and my mother will never have another mammogram, EVER! Any doctor that even mentions I should have one gets a ear full. I am kind, but I tell them what is the use if I have extremely dense tissue? My mother is in her 70's and still has dense tissue as far as I know. She is now getting ultrasounds as well.
There has to be a better option for those of us who have extremely dense tissue......MRI I think is probably the best of the options.
Thank you for sharing Tglio! I hope all is well with you as well!
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Gussy: Yes that is a larger tumor.....they certainly should have seen it on ultrasound! Your story shook me when I read what you wrote a while back. It is such a blessing the MRI saw it! I am assuming both you and Tglio had extremely dense tissue BIRAD 4 tissue.
The insurance industry needs to wake up. If they don't approve diagnostics we all want....we need to just push them with a call. And appeal any denials of insurance coverage for these diagnostics. So far my insurance hasn't been bad.....all has been covered. I think doctors worry it won't be covered but they need to advocate for us as well. I think this is perhaps starting to change....doctors are learning that women cannot be put in a box. Not all breasts are the same tissue type or same size and we have different needs for diagnostics. I think they are starting to hear us. Just never give up advocating for yourself....so important!
I hope all continues to go well for you! Sending a hug yr way!
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Hi, I discovered my Breast Cancer about 2 years ago. I wasn't supposed to have another mammogram for 2 years since they all have been negative but this time I felt a lump. I went to my mammogram and told them my issues, " found a lump, dimples underneath the lump, and seems like my breast is pulling towards the lump.' The mammogram showed negative but, i pointed towards the lump - 'it's here!' They immediately took me to get an ultrasound which clearly showed an almond shaped tumor approximately 2 cm. So the following week was a whirlwind: Monday: Results of biopsy; Wednesday: met my Breast Surgeon and Friday: had surgery.
I too had extremely dense breast tissue. If you have this type of breast tissue your Dr., should mandatory schedule an ultrasound. I am now 2 years into my treatment. Some people say 'survivor' but with the required medication that i am struggling through I don't feel like a 'survivor' i feel like a 'struggler'! My suggestions to women who are diagnosed is to get the book: Dr. Susan Love's Breast Book.
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kkjenkins:
Thank you for sharing your story. There are some women who mammograms work well for. I wasn't one of them. I too caught my lump. To me, it's a bit scary to think what if I had not felt lump? When would they have found my cancer if I had not felt it?
Sounds like you may have had lobular cancer am I right? My aunt had that and is going through treatment right now.
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There is an article in the latest issue of Woman' s Day about a 46 y/o woman who had dense breasts who turned up with Stage 4 MBC. She, too, always had negative mammograms. When in the world are doctors to realize that cancers hide in dense? I think an MRI every 3 years for patients with dense breasts is a necessity. I think we need to do some lobbying.
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I am 6 weeks post BMX for IDC and had extremely dense (although small) breasts. My paternal grandmother passed away from breast cancer in her late 40's and so i successfully requested starting mammograms in my late 30's. I also did genetic testing 5 years ago (when i was 40) and found i did not carry any BRCA Gene's.
From my 1st mammogram, the doctors talked of my extremely dense tissue (my favorite moment was when the radiologist rushed me out to one of the waiting areas to show me the breast density poster and excitedly told me mine were way worse than the poster! I was still in my gown!)
This past March at age 45, I did MBI for the 1st time (molecular breast imaging) along with my mammogram and my 2 cancerous spots in my right breast were caught on the MBI. The doctor showed me the images right away and how easily the spots were seen on the MBI and not at all on the mammogram (due to the density).
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Gussy:
I am sorry for the delay in response. I read your comment and went out and bought the Woman's World latest magazine. Yes her story was amazing! WOW. You are right, it is a crying shame that they put us all in a box when it comes to mammograms. I realize and acknowledge they DO work for 60% of women. And they do work well! But for the 40% that I am in, the other percentage, mammograms do not work so well for us!
Thank you so much for mentioning that article Gussy!!
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SPDGirl:
Thank you so much for sharing your experience with breast cancer! WOW! You and I have similar stories. Your tumor was staged and graded a bit higher than mine was though.
I was 49 when I caught my tumor last May. I have extremely dense tissue as well (stated on my last mammogram report). They didn't see my tumor either on a diagnostic 3D mammogram. I too am small breasted. I too had genetic testing which was negative for cancer genes. My maternal grandmother died of breast cancer (had it twice). My maternal aunt was diagnosed with invasive lobular carcinoma two weeks prior to my diagnosis. My aunt has dense tissue in her 60's. My mother who is in her 70's now still has dense tissue.
I am so sorry to hear your story. I am sorry you had to go through all you have gone through. I hope you heal well after your surgery you have had. What a blessing to have caught your tumor early. Why did they not do a MRI and instead a MBI? How does that differ to a MRI? Still have to have IV contrast? Sounds like it caught your cancer really well! That is good! Catching cancer early is so important.
I wish they would put those of us with dense tissue in a different category from the rest of the women. Mammograms didn't work for me.
I have to share my latest recheck appt. I went into the breast appt and had a manual exam. That is all I thought I was going in for. Then something was felt in the incision/bed of the lumpectomy. So off I went to a ultrasound which found nothing apparently. I refused to have a mammogram. They are referring me now for a MRI (which I had requested prior to my appt and was denied). So will see what the MRI shows. Hopefully it is just scar tissue. The ultrasound didn't show anything so since it saw my last tumor I would think it would have caught it if it was something to catch.
Anyway at my appt I was then told how mammograms are important to have. That they catch microcalcifications. And I thought to myself ok what exactly are microcalcifications? So I called and talked with the xray tech/mammo tech and a nurse in the specialty. They basically told me that microcalcifications are DCIS. Catching cancer early. Then I asked them, since I am classified as having extremely dense breast tissue and they did NOT see my tumor, how do they think they could see through my tissue to see microcalcifications? They tried to explain to me how they can see them. I asked do you see them in dense tissue patients, the nurse said yes. But I have a real difficult time believing that. I need to study up on that and see if there is any data suggesting they can see through dense tissue and see microcalcifications. That is something I am not sure about.
For now,I am sticking with ultrasounds and MRI. I figure that if I am having ultrasounds and/or MRI's every 6 mo they should catch anything very early as well. I don't trust mammograms for my diagnostics.
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Jons_girl: Thanks for the details. I have one breast that has lots of "areas of fibrogladular density" and calcifications. What they did 2 years ago was a stereostatic biopsy, which determined that the area was cancer free, and "normal" for me. I have digital mammograms and ultrasound on suspicious areas. It hurt like hell to have the biopsy, but it allowed me to make an informed decision and have peace about keeping it. Dense Breast = Snow globe mammogram!
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Jon's Girl: surgery recovery has been so much slower than I expected! The chest tightness is what is keeping me down, but i have a pre-existing problem with Sensory Processing Disorder that exsaperates it.
I am not sure why they suggested MBI over MRI. I have not had a breast MRI to this day 😯 . For the MBI, they inject a radioactive tracer via IV and then you have to sit in front of an xray type machine for 3 or 4 different sessions. I think they were like 7 minutes each. Although I got to be seated and they had a television in front of me, it was really hard to be still that long.
That whole day was something else. I was told I would be there a little over an hour (to complete a regular mammogram and MBI) and since it was just an annual appt without any concerns, I didn't have any qualms. I ended up being there over 6 hours! They found 2 spots on my right side via the MBI and wanted to biopsy them, but it took several ultrasounds and mammograms to pinpoint exact locations, etc. I have learned since that I was fortunate to be able to get that all done in the same day and I truly wasnt worried about any of it. I think I was just blissfully ignorant, even after biopsies, etc. I figured it would turn out to be nothing so the call 2 days later from my doctor was a complete surprise.
Do you have an appointment yet for your MRI?
MexicoHeather: snowglobe mammogram is right!!!!!!!!!!
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It is interesting to hear from everyone. I was told no test is perfect and they do not know for sure until after surgery and pathology. I, too, had extremely dense breasts, a family history and negative genetic testing after a full panel of 87 genes (heard they now have 101.) My tumor did not show up on an ultrasound and they really tried in order to attempt a core biopsy. The MRI also showed very very little enhancement that was interpreted as nothing. However, my mammogram showed two areas of clustered calcifications which the radiologist knew straight up were cancer. Stereotatic biopsy showed DCIS with a 6mm area of IDC. I am now just going to have the other breast removed as well, but was not mentally able to wrap my brain around it with the original diagnosis. The latest news last week on dense breasts was less than favorable, so for me a double mastectomy seems the best choice. However, I first have to get through the year of Herceptin for the HER2+!
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MexicoHeather:
Yes you are right about the snow globe and dense tissue! I got a copy of my mammogram cd just to see for myself what that stuff looks like. They are telling me that they can see into my extremely dense tissue and see calcifications when they can't even see a tumor! I am questioning that! But it is good they did see your calcifications! That is a blessing. I was told that microcalcifications are basically DCIS which I stated above. So that was interesting. I didn't know that. But I figure if they can't see my tumor how on earth can they see my microcalcifications if I did have any? So for now I am sticking with Ultrasound and MRI probably every 6 mo rotating between them.
I chose not to have hormone therapy or radiation. Tumor was very small and slow growing. So I keep doing diagnostics just to make sure the "rock" doesn't regrow!
I wish you the very best! No more cancer! Hugs to you!
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SPD girl: Wow I am sorry to hear that things have been going a bit rough.
Wow that MBI was a ordeal for sure!! Wow! It sounds though that is even better perhaps than a MRI? Just guessing, I don't know. But sounds like it is pretty thorough! And it is always a good thing when they catch stuff early! I am all for diagnostics! That is my treatment plan at this point.
Sounds like our cancers were similar. Glad they caught yours early! Huge blessing! I wish you the very best!! Hugs to you.
The MRI is going through the system of being handed off to various people and hoping it heads to my insurance soon for approval. But it is in the process. So that is good!
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I had a palpable lump that showed up on the mammogram and they either missed it on the ultrasound or didn't recognize it.
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My breast image center really stressed that I need the once a year MRI, mammogram not good enough.
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Becca953: That is true no test is perfect. Completely agree. For me in my situation, my tissue they could not see through to my tumor so I think it is so silly for them to even suggest a mammo for me. I saw the pictures myself (got a copy of the cd). I realize though for 60% of women with hardly any dense tissue or none yes mammograms are a great option for them. I wish I were one of them. My mother is in her 70's and aunt in her 60's both past menopause and both have dense tissue still! So even though they say once you hit menopause breast tissue is supposed to not be dense anymore, that isn't true for everyone apparently.
Wow I am so sorry what you are having to go through Becca. Another mastectomy. Sorry to hear that. Can you share with me what the news was about dense tissue that just apparently was released? I would like to read it if you wouldn't mind sharing. I am still trying to learn all I can about my tissue.
I am so curious as to why your tumor never showed on a ultrasound or MRI and yet they saw it on mammogram. If you have extremely dense tissue like me, how could they have seen it? That is amazing! It is good they were able to see it though!! That is a blessing.
Is herceptin bad? I never went on any hormone therapy....so don't know about that.
Sorry for all the questions.....Happy 4th of July! Hugs.
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WC3: Wow! That is amazing! Yes a experienced ultrasound tech can make all the difference. They can miss things I am sure. So do you have dense breast tissue? If not, it is customary for them to see just about anything on a mammogram. They are great diagnostics for most women. But about 40% of women they really can't see well in their dense tissue. Heterogenously and Extremely dense tissue are the two classifications that are most difficult for them to see apparently.
That is great they saw your tumor! What a blessing!
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Meow 13: Well that is wonderful they are being honest with you about that. Good diagnostic center! And what a blessing to get your MRI once a year! That is a great diagnostic for most people. I know that not all diagnostics are perfect. But MRI and Ultrasound tend to catch alot more dense tissue tumors than mammograms do. Most women though they can see through their tissue without trouble.
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can you all describe what the difference is between a stereostatic and needle core biopsy??
I had needle core biopsy. Why do drs choose to have one type over the other?
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Jons_girl -
Hi, happy belated 4th. I think everyone is different. My breasts are very dense, but they saw a small spot of clustered calcifications on my mammo. The did a follow up focused mammo enlarging the area. They are not sure why mine did not show up elsewhere, except that perhaps it had not had a chance to clump together yet to form a solid tumor. I had an ultrasound tech tell me that small areas less than or around 5mm are hard to see on ultrasounds. Apparently, MRIs also may not show small pockets of DCIS.
Here is the link for the news that I heard a few days ago which pretty much solidified my decision.
https://www.itnonline.com/content/norwegian-study-...
Also, here is a link for the difference on the two biopsies. I had to have a stereotatic.
https://www.oncolink.org/frequently-asked-question...
Also, Herceptin has few side effects, but a small percentage of women develop congestive heart failure that is usually reversible, so they may have to take a break from treatment. The biggest issue is that it is a year long, every three weeks. It has only been around about 20 years and was initially only used for HER2+ advanced breast cancer, but now they use it across the board for HER2+.
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Hi Becca! Yes Happy belated 4th of July!
Oh thank you for taking the time to respond to me! I appreciate this information! I may have other questions later after reading the links. But I so appreciate this.
Yes the whole mammogram thing is a mystery to me. And yes everyone is so different you are right! My tumor was 3-4 mm and was seen SO clearly on ultrasound, showed it's blood source and everything! It was amazing to me. So I had a very small tumor. But my tumor was ER & PR + and Her2 - So since your tumor was PR- and Her2+ maybe that makes it more difficult to see??? I find this stuff facinating, I know probably nobody else does, but to me it is interesting to see we both had small tumors and are both dense breasted and one was seen and the other not on a mammo. So amazing.
So is Herceptin chemo? Or is it like hormone blocking therapy? It sounds awful! I hope it goes well for you! Wow you have been through alot!
So the levels of density in a womans breast are categorized by BIRAD density levels. Fatty, Scattered Density, Heterogeneously Dense, Extremely Dense. I think they used to be ABCD and now they are 1234 or it may be the other way around. lol. What did they categorize you as? I was categorized as the last one....D or 4.
How was your chemo? Is Taxol a bad one? I know some are better than others, but no chemo is good chemo. However, I don't know much about chemo.
Sorry for all the questions.
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