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Many Women Don't Think Breast Density Is Important Risk Factor

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moderators Posts: 8,178

Many Women Don't Think Breast Density Is Important Risk Factor
Jan 25, 2023

Few women understand that having dense breasts increases breast cancer risk more than family history or some other risk factors. Read more...

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  • edwards750
    edwards750 Member Posts: 1,568
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    I will attest to that on my sister’s behalf. She had the double whammy family history and dense breasts. She had Lobular breast cancer and sadly it cost her her life three years ago. The cancer came back twice. By the time it travelled to her lungs and liver there was nothing they could do. She did everything right but it didn’t seem to matter

  • kaynotrealname
    kaynotrealname Member Posts: 410
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    Interesting but I don't think it's concerning. Half of women have high breast density. All my friends do in fact. We joked about it when we compared results from our first mammograms. I knew it increased my chances of getting breast cancer, so do they, don't know if we knew it was the most significant risk factor but really what would be the point if we had? We were already getting regular 3-D mammograms. Besides taking tomoxifen, which is overkill and possibly harmful for most women, nothing else much to do to monitor without an extensive family history. Anyway at this point in our lives, I'm the only one who has developed breast cancer and anyway we can't control breast density.

    But you know what we can control? Lifestyle. And I'm not talking about being overweight. We all know that contributes to health issues and people generally do the best they can with it. I'm talking about drinking. My dearest friend is a heavy drinker. She had no idea alcohol is a carcinogen and causes breast cancer along with 6 other cancer until I told her. I still don't know as she believes me since the campaign in the early 2000's generated by the alcohol companies extolling the "virtues" of drinking was so successful. But that's where we need to educate people. She also knows exercise is good for you but has no idea on how good it is. Anyway, I find that ignorance way more concerning than any ignorance over breast density.

  • sarahmaude
    sarahmaude Member Posts: 338
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    If half of women have dense breasts, then at least half of all women have a four times greater risk of breast cancer? Who has an average risk? Some of these statistics are completely unhelpful, especially when there is no standard of care for something that is so extremely common.

    I remember getting that letter saying I had dense breasts that both gave me a higher risk and decreased chance a mammogram would detect cancer. Made me wonder how useful basic screening was for me. 3D mammograms more effective. Ultrasound is certainly helpful. If additional screening is really recommended, it needs to be standard of care.

  • threetree
    threetree Member Posts: 1,422
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    At least they recognize that dense breasts are a problem now. I had a lumpectomy back in about 1971 when I was 19, for what turned out to be a benign fibroadenoma, and they told me then that I had dense breasts, but they told me it put me at no higher risk. I went with that for years, and maybe decades. At some point after (years, maybe decades later) a mammogram a doctor told me again that I had dense breasts and that I was at no higher risk than normal. He said dense breasts just made it a bit harder to see anything on the scan. Over the years, if I ever had concerns about that breast (occasional pains, weird feelings, and finally some physical changes), I was told it was the old scar tissue, nerve damage, etc., so I remained fairly unconcerned and didn't get routine mammos, because I was always told the same thing.

    Well in 2018, when I finally could tell something very serious was going on, I was diagnosed with a large stage 3, IDC, ER+ tumor in the exact same spot as that biopsy in 1971. Now they say dense breasts mean something. Too late for me, as I just crossed the line last week to stage 4. If I'd known over all these years, what I know today, I would have insisted on much more detailed exams and testing over the years. We've really got to be "on it" for ourselves; read all that we can, ask questions, and seek further opinions, etc.

  • kaynotrealname
    kaynotrealname Member Posts: 410
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    I completely agree, Sarah. I also don't know that I even think the dense breast tissue warnings are helpful. Knowing something and doing something about it are completely different things. I knew I had it but there was nothing more that was recommended for me to do. What was the purpose of that little addition to my letter beyond giving me and my friends something to laugh about. Dense breast tissue is normal yet we are warned about it as if it wasn't. As Threetree said I guess if women know about it they can insist on further testing but insurance doesn't pay for it. Maybe it helps women decide to maintain their regular mammograms but they should be doing that anyway. I don't know as that little addendum makes any women more inclined to do what is recommended or not. There are a variety of reasons people refuse regular checkups and it seems most of the time it comes down to fear or an erroneous sense that nothing bad could happen to them. Or maybe a combination of both. At any rate if they want women with dense breasts to get better care, then make better care standard for them. Otherwise nothing useful comes from adding more and more warnings or trying to more fully educate us.

  • sarahmaude
    sarahmaude Member Posts: 338
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    threetree, I agree! My bone to pick is a little like yours. I've had lumpy breasts since I was about 21. Had a doctor try to aspirate a fibroadenoma in my non-cancerous side. Have had callbacks for ultrasound which all came back clear. Also on the non-cancerous side. I've had doctors say, "it's a shame you have dense breasts, makes it harder to detect." Then I got the letter from the state, and I was frankly confused.

    I'm working on a presentation to my work organization about my BC story. I've been drilling into risks of BC, and even though I'm "highly educated" and have worked in science and technology for decades, I get really confused. One of the sites (ACS, maybe) referred me to online risk calculators. I ran one this week using my info prior to diagnosis, and even with dense breasts, all my other "good" traits (no family history, normal weight, no smoking or drinking) combined with my age and dense breasts generated a result that had me below "average" risk.

    While I think it's important to know the risk factors, I think it's more important to have a good response to the risk factors. I don't think it's reasonable to have 50% of the population do prophylactic mastectomies. Nerdy

    I'll get my first post-cancer mammogram next month. I'll be paying over $2000 out of pocket because I haven't met my deductible, and I need a diagnostic mammogram which includes ultrasound, not a screening mammogram so that they can relearn my post-lumpectomy breast. This is instead of fully covered under a screening protocol.

    I think that having dense breasts should automatically mean we get ultrasounds at screening appointments. I HATED getting called back weeks later, and worrying for those next appointments and then being told, "it's nothing, but it's a shame you have dense breasts." I heard the same thing for years at annual GYN appointments. Let's stop telling women, "it's a shame," and automatically classify us as "high risk" (If it's really 4 x higher risk...) and do a better job screening.

    I think the text of those letters needs to have specific instructions that go beyond, "your mammogram may not work well, and you are at higher risk," and instead say, "we recommend that you have xxx type screening at xxx frequency). It appears that actual recommendations for changes in standards of care aren't ready yet.

    It's also confusing to me on the guidance for self exam. As many of us have had procedures based on benign self or imaging findings, we know that most things women find themselves are also benign. In my case, though, I found my lump when I was taking low dose estrogen cream for recurrent UTIs. It caused my breasts to feel tender, and that's when I noticed a change that was a large grade 3 cancer. Because of my history of false positives, I didn't rush to have the lump evaluated. I waited 2 months to bring it up to my doctor thinking that stopping the estrogen would resolve the situation. When it didn't, I brought it up at an appointment with my family doctor that was for another UTI. And then, I waited another month for my appointment. I don't think it changed my outcome, but who knows. Combine that with not getting mammograms during my mom's illness where I was her caregiver and then COVID delays, I was fortunate to only be stage IIA at diagnosis.

    I think there is SO MUCH MORE we need to know about who is at risk, what we can do to both reduce risk and improve screening effectiveness. And even beyond that, once we are diagnosed and treated, what can we do to monitor for recurrence, and is there anything we can do between early stage treatment and that long wait until too many of us have a stage 4 recurrence.


  • maggie15
    maggie15 Member Posts: 993
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    False negatives are a general problem with screening mammograms which miss 1 out of 8 tumors and it's not just because of dense breasts. My breasts are not dense and after possible architectural distortion was noticed (not present on recall) I had three birads 2 mammograms until suspicious calcifications appeared in the same place two and a half years later. The big tumor was very evident on my ultrasound guided biopsy; the radiologist went back to look at the "clear" mammograms and still couldn't see anything. The addition of AI is supposed to help but using just the single modality of detection misses over 12% of tumors.

    Maybe someone can invent an imaging machine that uses both mammography and ultrasound. One day during radiation I was treated in a combined MRI-LINAC machine using just the linear accelerator function because one of the LINACs was down, so it might be technologically possible (I'm not an engineer.) Unfortunately cost drives many treatment decisions and those of us who are missed are just the economically acceptable fallout. However, reducing the number of false positives requiring additional imaging, biopsies and pathology might make the cost of coming up with more effective screening worth it.

  • threetree
    threetree Member Posts: 1,422
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    The facility I go to is a large university hospital with a medical school and well known cancer research center. The last letter I got from them, after my most recent mammo, stated that I have dense breasts (well only one anymore), but that they are not automatically following those up with ultrasounds, because in their estimation the research still does not show at this point, that it actually makes much difference (something like that). I imagine then that if one asked for a follow-up ultrasound, it might not get covered.

  • laughinggull
    laughinggull Member Posts: 516
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    I dont see how ignorance about breast tissue density is a concern, since there is absolutely nothing you can do to change your breast density. I would say awareness of the risk posed by alcohol/overweight/lifestyle are more relevant because you can do something about them.

    I knew for a long time that my breasts were dense and that it was a risk factor, and that made no difference. I was screened very closely and regularly, and still I only found the cancer myself, when it was already in my lymph nodes. Dont know what I could have done differently.

  • moderators
    moderators Posts: 8,178
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    A related story, published today, you might be interested in:

    Breast MRI Best Supplemental Screening for Dense Breasts
    Feb 3, 2023

    Breast MRI seems to be the best supplemental screening method for finding cancer in women with dense breasts. Read more...

  • lillyishere
    lillyishere Member Posts: 773
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    I had an extremely dense breast but no doctor told me that I was at high risk for BC. I was told I was very low risk because of no genetic predisposition and a very healthy lifestyle. For us who are not medical doctors, we won't know until the professionals tell us so.

  • sarahmaude
    sarahmaude Member Posts: 338
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    Breast MRI isn’t currently very appealing to me. Not only does it take about an hour, it also typically involves IV contrast. My MRI revealed falsely positive satellite abnormalities that almost cost me a chance for the lumpectomy I wanted. The IV also provoked a DVT in my arm that disqualified me from eligibility for DIEP if I’d needed a mastectomy.

    Maybe improved MRI technology will alleviate a need for contrast and AI can reduce false positives.

    I am feeling pretty negative about that first study. How does knowing my risk is increased help me today? I just hope there are better actions available to my daughters in the future.

  • kaynotrealname
    kaynotrealname Member Posts: 410
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    I've been aware of the discussion around MRIs for years in relation to dense breasts. The problem is that they are not covered by insurance for screening purposes. The reason from what I've read and been told by my doctors is because an MRI detects everything and it would be much more likely that women would be subjected to many more biopsies. Sure a few more cancers may be detected as a result but at what price. Biopsies cost a crap load of money and women find them horrendously stressful. Personally I think 3-D mammograms are our best best right now along with educating women in regards to breast exams and healthy lifestyle choices. I think we'll get to the point that blood tests will be able to detect early cancers but we've got a way to go yet.

  • ruthbru
    ruthbru Member Posts: 47,144
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    I'm sure that dense breasts are a risk factor; but since there is nothing I can do about that & MRIs pose their own risks, as kaynotrealname points out, I am satisfied with doing monthly exams, having a yearly 3-D mammogram, and concentrating on lifestyle choices, things I CAN control.

  • sarahmaude
    sarahmaude Member Posts: 338
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    Ruthbru, I agree that right now I think 3D mammograms, ultrasound when indicated, and knowing your own breasts is the best we have now.

  • elderberry
    elderberry Member Posts: 1,065
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    I think the main risk factor with dense breasts is that small anomalies can't be seen or felt and are missed by mammos. By the time they are palpable they are more invasive, need more drastic surgery and may even be metastatic having hung around so so long without treatment. Just in the last few years has the breast screening done in BC told you if you have dense breasts and the degree of density. Ultrasounds are being recommended, skipping the mammos altogether in some cases.

    I was all clear a year before my DX and no family history. I can remember so clearly feeling like the side wire on my bra was pinching. I took the bra off and really massaged the left breast, squeezing and pushing it all over the place. If felt just like the right one. Just fine. ONE month later I was in the shower, soaping up my pits and felt this huge rock like thing right where the bra had hurt. 5 bloody cm.

    My other factors: an early start to periods (11 years old) and a late menopause (56), no children and hence no breast feeding etc etc. I also have NF1 which up until recently I had no idea can also be factor.

  • momgoose
    momgoose Member Posts: 71
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    I was one of those women who didn't know that having dense breasts was an independent risk factor for breast cancer. Combined with my strong family history (but no known genetic mutations) I had something like a 40% lifetime risk. I thought I was well-educated on screenings and did my self exams and mammograms regularly, yet it was a finding of micro-calcifications on a mammogram and the statement at the bottom of the report that additional screening "may" be helpful due to dense breast tissue, that caused me to mention it to my new family physician. I asked if he thought it would be a good idea to do an MRI based on that info. He told me he had never sent a patient to have one, but given my family history, he would be willing to try and see if insurance would cover it. It was nearly a year later (because he thought I meant instead of an annual mammogram) but that MRI found two spots in my left breast and some questionable spots in the right (the right side turned out to be cysts, because I have dense, fibrocystic breasts just to make it even harder!) I had an ultrasound-guided biopsy which confirmed IDC in the left, but they still weren't able to visualize everything well with ultrasound only. So back to the MRI for a biopsy there on both sides ( to the tune of something like $15k, I would later find out!) and 2 areas of left IDC were confirmed.

    For me, the MRI was absolutely life-changing, if not life-saving. Without it, I have no idea when my cancer would have been caught. It could not be seen at all on mammograms. Neither the doctors, nor I could feel a lump. Ultrasound was uncertain. With MRI, I was able to catch my IDC at stage 1A. I chose a bilateral mastectomy and just found out that I will be doing Tamoxifen for the next 5 years+. Finding cancer early almost certainly allowed me to make choices as to how I wanted to treat this and allowed me to skip chemotherapy. Obviously, there will false positives with more screening, but as someone who has just been through this and massively benefitted from MRI screening, I know it can work.

    I agree with the other poster who said that the wording about dense breasts should be different. Don't say it "may" be useful. Encourage more follow up, whether it be ultrasound or MRI. Educate women that breast density is an independent risk factor. Perhaps just as importantly, educate ALL health care providers, in particular family physicians and OBGYNs about the additional risk and the additional screening options that are available. I hope and pray that my experience taught my fairly young family practice provider to pay attention when a woman has dense breasts. He now knows how the process can benefit a patient and I truly hope that some other woman will be saved by hearing about my experience.

    Christina


  • kaynotrealname
    kaynotrealname Member Posts: 410
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    I think they use the word "may" because yes technically a breast MRI is better at detecting cancer in dense breasts. But at what cost? Tons of unnecessary biopsies, hence huge anxiety and psychological ramifications, and major increased costs. 50% of women have dense breasts. It's just not feasible to give them all MRI's for just standard screening. I shutter to think of that with me and I actually was diagnosed with breast cancer. I think if you have a family history though, or a gene, or something else beyond dense breasts, an MRI could be an additional step that we could require insurances to cover.

    What they're beginning to realize with breast cancer, and maybe even other cancers for all I know, is that early detection isn't everything. First of all, if a woman does have standard, yearly mammograms the vast majority of breast cancers are detected early even with woman having dense breasts. Younger women don't have standard mammograms though and therein lies a problem. However, beyond that, breast cancers are unique. We have four types and some are way more aggressive than others. Catching a triple negative at stage 1 is great but you won't avoid chemo for instance and your recurrence rate for the first five years is higher than hormone positive tumors. Hormone positive tumors can usually avoid chemo even in the stage 2 category as long as lymph nodes aren't involved. Endocrine therapy is great there. But their recurrence rates actually increase after the five year mark all the way up to 20 years. So adding other tests to try and detect breast cancers even earlier than a mammogram will probably not substantially increase survival. We need more cures. That will make the difference IMO.

  • devoinaz
    devoinaz Member Posts: 40
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    A bit late to post here, but there's actually another good option that is not quite as invasive or expensive as an MRI, but much better than a 3D mammogram. It's called a contrast mammogram, and it only costs about $200 more than the 3D mammogram. This is the test that was recommended when I was flagged as high risk - in large part due to my extremely dense breast tissue. They do use IV contrast dye, but it is the same stuff that they use for CT scans, and different from the MRI contrast. The contrast mammogram found my ILC that was totally invisible on the 3D mammogram and not palpable by me or the doctors, even after we knew where it was.

    The problem is that most breast cancer centers don't offer this test! The test is not yet officially recommended by the breast cancer medical association (which is crazy to me!), but my cancer center is the Mayo Clinic, and they've been using contrast mammograms successfully for over a decade. MSK in NYC also offers contrast mammograms, but hardly anywhere else does. Another advantage is that the rate of false positives is pretty low, unlike the MRI.

    One more thing that my doctor explained to me is that even though half of women have "dense" breast tissue, they actually divide breast density into 4 categories: A through D. The seriously elevated risk and regular screening failure is for women with category D density, which is only about 10% of us (I'm in this group, unfortunately). So, if your doctor says you have dense breasts, maybe ask if you are category C or D, and what they recommend.

  • kaynotrealname
    kaynotrealname Member Posts: 410
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    On another note you can alternate from density C to D depending on weight changes. I had lost a bunch of weight one year and that year they categorized me as D. The next year I had gained some back and I went back to my usual C. But did my actual breast cancer risk go up the year I lost weight (weight I needed to I may add)? No. So I'm not sure how much it matters in real life whether you are C or D. Didn't know there was a contrast MRI though!

  • devoinaz
    devoinaz Member Posts: 40
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    @kaynotrealname Interesting that you switched between categories for breast density based on weight! I knew breast density is supposed to go down with age, but I didn't know it went up and down with weight. When that happens, it seems like the person's risk of actually having cancer probably doesn't change (like you said), but I wonder if the mammogram effectiveness at detecting cancer actually does change...

  • kaynotrealname
    kaynotrealname Member Posts: 410
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    Don't know. Interesting question actually but if I were to hazard a guess I'd say no. What changed my density is that I got fat to go along with the breast tissue when I was bigger and a mammogram doesn't have problem seeing through fat. But my actual breast tissue always remained the same regardless and that's where I grew the cancer.

  • aq82
    aq82 Member Posts: 2
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    I've truly just been absorbing alot of information on this forum and am thankful to have found it. I found a small, hard, painless lump approx 3wks ago and have since had my GYN confirm it, a diagnostic 3D mammogram with ultrasound and a core biopsy using ultrasound a week later. I'm currently waiting on biopsy results.

    I found it interesting reading about the MRI pros and cons and was told during my biopsy that my breast tissue is extremely dense to the point that they had to use a different gauge catheter to reach the mass since the standard one wouldn't advance thru the tissue. Also was placed in dense category D per mammogram.

    However, I have a cardiac pacemaker on my left side so an MRI in any capacity is not an option for me. I was intrigued to read about the contrast mammogram which would be an alternative route for someone like me. Definitely agree with others about the costs associated and continue to hope that future advancements give more options.

    Alicia