heterogeneously dense "book" tissue

[cintinative]

I think I have the right replacement word??

Every mammogram I get, including the last three or four 3D ones, say this. 

Basically, it sounds like I cannot rely on mammograms to catch anything, and I need to be more careful about self-exams?
 

Any experience?

[PronghornD]

I usually get ultrasounds too every time I get a mammogram. That helps catch any abnormalities. I have also learned to expect call backs etc., so I don't get worried unnecessarily.

[cintinative]

2 minutes ago, PronghornD said:

I usually get ultrasounds too every time I get a mammogram. That helps catch any abnormalities. I have also learned to expect call backs etc., so I don't get worried unnecessarily.

I have not had a call back yet. Did the ultrasounds result from call backs?

[PronghornD]

At this point, the ultrasounds are just routine. Originally they started with questionable areas. I have also been called back for more pictures. I suggest you ask about ultrasounds next time and also see if insurance will cover it. Mine is covered , but I usually end up with a few hundred in copay and/or deductible.

[fairfarmhand]

I have this too and I have breast mri every year as well.

[Faith-manor]

Mine are so dense, the doctor doesn't even bother with mammograms. It is a useless test. Breast ultrasound is ordered for me.

[Guest]

Yes, me. I found my tumor in a self-exam. I always get that letter that basically says, “We tried; might as well X-ray cement.” 

[mlktwins]

I have this too. After talking with my GYN, I added an ABUS a few years ago.  I got a call back for more ultrasounds from the results of this test. But everything was ok. 

I needed that peace of mind.

 

[cintinative]

I definitely want to ask my gyn about this now. I have unfortunately had several over the past few years because of retirement and job moves, so no one consistent has been looking at it. Thank you.

[Kassia]

1 hour ago, Quill said:

 I always get that letter that basically says, “We tried; might as well X-ray cement.” 

Same.  It's like the letter says " looked fine but we couldn't see anything so who knows?"  One technician told me I had the densest breasts she had ever seen but I really don't think that could be since so many women have this issue.

A friend of mine also found her breast cancer by self-exam after regular mammogram results gave her the all clear with the warning that she had dense tissue.

Edited December 6, 2022 by Kassia

[Miss Tick]

Apparently there is some variation by state as to what is required. My OB said that in my state the "all-clear" letter that mentions dense tissue is also supposed to advise an ultrasound and that wording then means that insurance has to cover it. However, not all the letters do that because it is not uncommon for the person reading the mammogram to be located out of state (thank you interwebs) and not know all the applicable laws.

Is the ultrasound more comfortable than the mammogram? Because then why don't we skip that first, invasive and often painful step and go right to the more effective and hopefully less intrusive screen? Even better, just scan me at the airport when I'm already standing in that machine. 😄

Ever since I got a surprise bill for a "diagnostic" mammogram I've been much more reluctant to bother with the whole process - which I realize is irrational and adds some risk to my life.

[Pawz4me]

I always get the letter but I've never asked my PCP if I need additional or alternative screening methods. I do get the 3D mammos.

[Guest]

23 minutes ago, Miss Tick said:

Apparently there is some variation by state as to what is required. My OB said that in my state the "all-clear" letter that mentions dense tissue is also supposed to advise an ultrasound and that wording then means that insurance has to cover it. However, not all the letters do that because it is not uncommon for the person reading the mammogram to be located out of state (thank you interwebs) and not know all the applicable laws.

Is the ultrasound more comfortable than the mammogram? Because then why don't we skip that first, invasive and often painful step and go right to the more effective and hopefully less intrusive screen? Even better, just scan me at the airport when I'm already standing in that machine. 😄

Ever since I got a surprise bill for a "diagnostic" mammogram I've been much more reluctant to bother with the whole process - which I realize is irrational and adds some risk to my life.

I find the US to be far more comfortable than the mammo, but they only used it when I was dx’d. I’m not sure why that is considered secondary but that’s how it is here. And I get 3D 

[PronghornD]

27 minutes ago, Miss Tick said:

Apparently there is some variation by state as to what is required. My OB said that in my state the "all-clear" letter that mentions dense tissue is also supposed to advise an ultrasound and that wording then means that insurance has to cover it. However, not all the letters do that because it is not uncommon for the person reading the mammogram to be located out of state (thank you interwebs) and not know all the applicable laws.

Is the ultrasound more comfortable than the mammogram? Because then why don't we skip that first, invasive and often painful step and go right to the more effective and hopefully less intrusive screen? Even better, just scan me at the airport when I'm already standing in that machine. 😄

Ever since I got a surprise bill for a "diagnostic" mammogram I've been much more reluctant to bother with the whole process - which I realize is irrational and adds some risk to my life.

I think I asked about how ultrasounds and mammograms relate and they told me they are complementary and therefore you should get both.

 

The ultrasound is usually pretty comfortable but somewhat time consuming, at least for me. And not free!

 

I wonder about your surprise bill. I thought The Affordable Care Act made mammograms 100 percent covered with no copay or deductible.

[cintinative]

29 minutes ago, Pawz4me said:

I always get the letter but I've never asked my PCP if I need additional or alternative screening methods. I do get the 3D mammos.

Me too. This year I am going to ask.

[Miss Tick]

1 minute ago, PronghornD said:

I wonder about your surprise bill. I thought The Affordable Care Act made mammograms 100 percent covered with no copay or deductible.

Well, I'm old enough that my thing probably happened before ACA, BUT I bet even ACA only covers regular, preventative mammograms. My surprise bill was the first time I learned that there are different types of mammograms and I had been referred for a more in-depth kind. You know how it is, insurance has different rules that kick in if you might actually be sick and this in-depth screening was the first step down that possible path. The surprise bill came with an all clear reading (which I was relieved to see!) I was just naive about the system at that time. However I still feel the effects. Last year, for instance, I missed my mammogram appointment and then also missed the reschedule. I was so embarrassed because I never miss appointments generally and I'm compulsively timely for my commitments. It is just this area where I see this breakdown, forgetting to schedule, missing the appointments.

[Pawz4me]

16 minutes ago, PronghornD said:

I wonder about your surprise bill. I thought The Affordable Care Act made mammograms 100 percent covered with no copay or deductible.

Screening mammograms have to be covered completely by insurance. Not diagnostic mammograms.

[cintinative]

i called my doctor to schedule my annual and talked to a nurse.  She said about 90% of women have this dense breast tissue issue. Also that most of the time the mammogram catches a tumor before someone finds it via self exam. She said they really don't do ultrasounds unless they have a target area to look at--they don't ultrasound the entire breast.

So this seems like a massive cover your butt thing--"it looks clear, for now, but you know, we can't really tell, so"?  And some 90% of the population has to deal with this?  I  am confused.

[PronghornD]

2 hours ago, cintinative said:

i called my doctor to schedule my annual and talked to a nurse.  She said about 90% of women have this dense breast tissue issue. Also that most of the time the mammogram catches a tumor before someone finds it via self exam. She said they really don't do ultrasounds unless they have a target area to look at--they don't ultrasound the entire breast.

So this seems like a massive cover your butt thing--"it looks clear, for now, but you know, we can't really tell, so"?  And some 90% of the population has to deal with this?  I  am confused.

That's really different from my experience. They do two whole breasts for me routinely!

[cintinative]

1 hour ago, PronghornD said:

That's really different from my experience. They do two whole breasts for me routinely!

Are you in the U.S.?  Some of our boardies are from elsewhere, and medical practices can vary, which is why I ask.  

[kbutton]

6 hours ago, cintinative said:

i called my doctor to schedule my annual and talked to a nurse.  She said about 90% of women have this dense breast tissue issue. Also that most of the time the mammogram catches a tumor before someone finds it via self exam. She said they really don't do ultrasounds unless they have a target area to look at--they don't ultrasound the entire breast.

So this seems like a massive cover your butt thing--"it looks clear, for now, but you know, we can't really tell, so"?  And some 90% of the population has to deal with this?  I  am confused.

I think that what your doctor does is not likely to be consistent across all health systems. 

I had an ultrasound once due to a lymph node issue, and they definitely did the whole breast AND made me get a mammo. 

The 90% appears to be wrong. https://www.mayoclinic.org/tests-procedures/mammogram/in-depth/dense-breast-tissue/art-20123968

Quote

The levels of density are:

 

• A: Almost entirely fatty indicates that the breasts are almost entirely composed of fat. About 1 in 10 women has this result.
• B: Scattered areas of fibroglandular density indicates there are some scattered areas of density, but the majority of the breast tissue is nondense. About 4 in 10 women have this result.
• 😄 Heterogeneously dense indicates that there are some areas of nondense tissue, but that the majority of the breast tissue is dense. About 4 in 10 women have this result.
• 😧 Extremely dense indicates that nearly all of the breast tissue is dense. About 1 in 10 women has this result.

In general, women with breasts that are classified as heterogeneously dense or extremely dense are considered to have dense breasts. About half of women undergoing mammograms have dense breasts.

 

[cintinative]

Thanks @kbutton ! It did seem really odd to me, if it was true that it was 90%, that we just accept that the mammogram isn't going to be terribly accurate. 

This all really makes me wonder how many women do just sort of ignore these letters from their mammogram provider every year about dense breasts.

[PronghornD]

2 hours ago, cintinative said:

Are you in the U.S.?  Some of our boardies are from elsewhere, and medical practices can vary, which is why I ask.  

I am in the US.

[kbutton]

2 minutes ago, cintinative said:

Thanks @kbutton ! It did seem really odd to me, if it was true that it was 90%, that we just accept that the mammogram isn't going to be terribly accurate. 

This all really makes me wonder how many women do just sort of ignore these letters from their mammogram provider every year about dense breasts.

I took mine to heart, and I am glad the information is included as a standard thing now--it was not years ago when I had my first one for my lymph node issue.

I wanted to know if I was going to have to worry much about checking beyond mammograms. I have a LOT of tissue irregularities throughout my body, so I am loathe to do frequent breast exams. I can find lumps, bumps, thickenings, etc. all over my body and always have (including bony things that reabsorb sometimes). A lot of people in my family have cysts in various body parts as well as fatty lipomas. Regular breast exams would just make me utterly batty, for good or for ill. The women in the family that do have dense breasts have a lot of mammo callbacks, biopsies, etc. I seem to have dodged the density issue.

[Acorn]

8 minutes ago, cintinative said:

Thanks @kbutton ! It did seem really odd to me, if it was true that it was 90%, that we just accept that the mammogram isn't going to be terribly accurate. 

This all really makes me wonder how many women do just sort of ignore these letters from their mammogram provider every year about dense breasts.

I think that linked Mayo info box supports that 90% of women some degree of density. I’ve discussed my density with my own care providers. My primary care doc thinks I should get an MRI, but my insurance will not pay toward one. Different radiologist agree I should have ultrasound done with annual screening mammogram but my insurance won’t pay toward that unless there is diagnostic mammogram done first. My gyn doesn’t think I have an elevated  risk of breast cancer and seems to think I should accustom myself to the frequent call backs and biopsies. In addition to dense breast tissue, I also have fibrocystic tissue.

[cintinative]

1 minute ago, Acorn said:

 My gyn doesn’t think I have an elevated  risk of breast cancer and seems to think I should accustom myself to the frequent call backs and biopsies. In addition to dense breast tissue, I also have fibrocystic tissue.

Ugh. The biopsies have to be so painful!  What a thing to have to become accustomed to! =(

[Miss Tick]

3 minutes ago, Acorn said:

I should accustom myself to the frequent call backs and biopsies.

I'm no insurance executive, but gosh, that sounds stressful and expensive for the insurance company, trading some of that for the ultrasound would be nice.

[Acorn]

20 minutes ago, cintinative said:

Ugh. The biopsies have to be so painful!  What a thing to have to become accustomed to! =(

Edited December 7, 2022 by Acorn
Trying to add text

[Acorn]

Part 2 from quote box that didn’t let me add text:

 

I have had two needle biopsies that were mammogram guided or ultrasound guided. They weren’t painful but were expensive. I do see why it would lead some people on a path of medical avoidance or delays.

[ddcrook]

10 hours ago, Miss Tick said:

Well, I'm old enough that my thing probably happened before ACA, BUT I bet even ACA only covers regular, preventative mammograms. My surprise bill was the first time I learned that there are different types of mammograms and I had been referred for a more in-depth kind. You know how it is, insurance has different rules that kick in if you might actually be sick and this in-depth screening was the first step down that possible path. 

Yes, it's so frustrating. Screening mammograms are completely covered by insurance, but diagnostic mammograms are not. So women with a normal b cancer risk get free yearly mammograms while women who have previously had cancer or have an 80% risk due to a BRCA mutation have to pay for yearly mris and mammograms. 

[kbutton]

2 hours ago, Acorn said:

I think that linked Mayo info box supports that 90% of women some degree of density. I’ve discussed my density with my own care providers. My primary care doc thinks I should get an MRI, but my insurance will not pay toward one. Different radiologist agree I should have ultrasound done with annual screening mammogram but my insurance won’t pay toward that unless there is diagnostic mammogram done first. My gyn doesn’t think I have an elevated  risk of breast cancer and seems to think I should accustom myself to the frequent call backs and biopsies. In addition to dense breast tissue, I also have fibrocystic tissue.

Some degree of density is not the same as categories 3 and 4. The doctor is literally lumping three entire categories (with different risks) into one. That kind of stuff makes me crazy and makes me hate going to the doctor. 

Why categorize tissue at all if it will not be acted upon? There is a reason for these categorizations.

I have a LOT of bad experiences this year with medical people not following through on what they say or what is best practice, and I'm fed up with it. I also have a child that was in a life-threatening situation where clinicians didn't do the right thing in spite of DH, who is a medical provider, telling them exactly what was the right thing as both a parent who knew more about the situation and as a clinician who had more experience with the symptoms.

Glossing over details and running together different risk categories is sloppy medicine, and it has consequences, not the least of which is doctors not taking things seriously that they should.

[sbgrace]

I'm very dense. My doctor added ABUS (automated br..t ultrasound) to my yearly mammogram. ABUS is good for screening dense books. I feel good about this change. I have to pay for it as standard care instead of covered preventative, but it was around $125 for my portion. My sister paid a lot more out of pocket for hers. If you decide to add ABUS, I'd shop around for cost differences. 

Edited December 7, 2022 by sbgrace