breast density and mammogram findings

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Polyana
Polyana Member Posts: 200
edited June 2014 in Advocacy

Hi,

I started my tests with a mammogram, despite the fact that I have a lump underneath my nipple, but it did not show at all in my mammogram images. The technician told me that bith breast look very much alike and normal. She said unless she feels the lump with her hand she can't tell it is there. How accurate is the mammogram reading for small breasts that do not have fat tissue. Did I start right, or I was waisting my time? Could at least any sort of suspiciouse image show up in a mammo?

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Comments

  • Leah_S
    Leah_S Member Posts: 8,458
    edited June 2010

    I also have very small breasts (or I should say HAD since I had a unimast)  and the palpable lump didn't show up. I don't know if it's size. It's unlikely to be density since I was 57 at the time. An ultrasound showed it clearly - I think those are more accurate for us "little" girls than mammos.

    If there's a palpable lump, speak to your doc about ultrasound and/or MRI.

    Best of luck.

    Leah

  • leaf
    leaf Member Posts: 8,188
    edited June 2010

    Dense breasts can be very hard to read on a mammogram. 

    In this study, 37 cancers were detected on ultrasound out of 9137 women who had dense breasts and negative mammograms.   They don't mention if they had lumps, however. http://www.ncbi.nlm.nih.gov/pubmed/18267357

    In this quite OLD paper (1990) Eighty-seven per cent of the patients with breast cancer presented with a lump... The false negative rate for clinical diagnosis was 19%, and for mammographic diagnosis it was 29%. Premenopausal mammographic diagnosis had a significantly higher false negative rate (54%) than postmenopausal diagnosis (14%). Mammographic examination had a particularly high false negative rate (65%) when cancer was thought clinically to be of "low index of suspicion". http://www.ncbi.nlm.nih.gov/pubmed/2198443  I think that mammography has improved a lot in the last 20 years,but I can't find info right now.

    Mammograms do not pick up 100% of cancer, nor does any imaging system.  Ultrasounds are often quite useful to tell if it is a cyst, which, especially when deep, can feel like a lump.  Cysts are almost always benign.

    The gold standard of diagnosis is a biopsy.  The more negative imaging you have, the less your chance of having breast cancer.  

    Best wishes for a benign outcome.

  • otter
    otter Member Posts: 6,099
    edited June 2010

    Polyana, if you feel a lump and your mammogram was normal, you should ask for follow-up imaging. 

    I am the poster-child for insisting on additional studies when the patient can feel a lump but nobody else can, or it isn't visible on mammograms.  I had a lump in my left breast that I could feel but my GYN could not; he sent me for a "regular" (i.e., screening) mammogram and it came back "normal".  A year later, I could still feel the lump, and so could he; but again he sent me for a "regular" (screening, not diagnostic) mammogram and the result came back "normal".  At that clinic no one ever told me I should have been asking for (perhaps insisting on) diagnostic mammograms instead of the regular, screening ones.  And, when the mammogram results did not show the lump, and the report said "no evidence of cancer or change from last time," I should have insisted on additional testing.

    After I was dx'd with BC (at another hospital), I fired my original GYN and stopped having my mammograms at that clinic.  I now have my mammograms at a "Breast Health Center"/Interdisciplinary Breast Cancer Clinic at a big university hospital where my breast surgeon still provides me with follow-up care.  If I tell the mammography tech that I feel a lump (as was true last fall), she automatically orders an ultrasound exam to be done immediately after the mammogram.  The ultrasound is done regardless of the results of the mammogram and even if she can't feel the lump.  She and the radiologist who gave me my imaging results said that's the center's policy:  a palpable lump is checked out with ultrasound.

    My breasts were always small (34B/36A) and my breast tissue has always been dense.  As leaf said, dense breast tissue makes it difficult to see things on a mammogram.

    otter

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2010

    I also had very small breasts 34A and am thin.  My digital mammogram showed absolutely nothing and I had a Stage 2 IDC tumor which was 2.2 cm.  Please do not rely upon a mammogram.  My lump could also be felt and the doctor told me not to worry.  Mammograms do not work for dense breast tissue.

  • jadalynn
    jadalynn Member Posts: 1
    edited June 2010

    I have a mass in my left breast , they have done a mammo and 2 ultra sounds plus sent me to see a surgeon the radiologist suggests a fine needle biopsy ,surgeon didn't agree said she didn't feel a lump or see one but 4 different individuals have . Now they say to wait 2 to 4 wks and do another ultra sound, but yet they can't tell me if I have cancer or not i feel like they are jerking me around ! Help, don't know what to do! Oh, almost forgot the radiologist changed his mind to the same as the surgeons and my breasts are very dense

  • jonesonz
    jonesonz Member Posts: 4
    edited June 2010

    Dense breast tissue makes it difficult to see things on a mammogram.

     Good luck 

  • LtotheK
    LtotheK Member Posts: 2,095
    edited June 2010

    I've been getting mammos every 6 months because of fibroadenomas, and my IDC never showed up on mammo.  I found it myself, and my breast surgeon also said that he might not have found it palpating.  The combination of ultrasound and mammogram is an improvement, but I believe at this time that MRI in my case is the only way to go, that is where mine showed up.

    If you read Dr. Susan Love, however, the diagnostics for BC have a long way to go in general, many improvements needed.  MRI is hardly foolproof, either. 

    I also question studies more carefully now.  The reports often suggest that BSE is not helpful.  Well, I'm among about 3 - 4 women I know who found their own lump.

  • Rocket
    Rocket Member Posts: 1,197
    edited June 2010

    HI Ladies - I'm going to throw in my two cents worth here.  I had been having normal mammograms for 9 years.  I'm now 49.  As I went into peri-menopause about five years ago I developed a lump and two thickened areas in my right breast and brought this to the attention of my OB/GYN.  I too have extremely dense breast tissue and was a size 36 B.  My right breast was always a little larger than the left. I never missed a mammogram or yearly exam, and each time I pointed out these areas to my doctor who continually reassured me that all was well.  He acknowledged that he could palpate the three areas.  He never once recommended an ultrasound.  He just kept saying, "You have very dense, fibrocystic breasts." 

    On January 5, 2010, nine months after I had a cyst aspirated in the right breast and again pointed out the lump right next to the cyst, the lump began to get painful.  I decided to go to the doctor and have him aspirate that as well.  He happened to be busy with patients that day, so I saw the PA.  She tried to aspirate it, but couldn't.  She sent the cells to pathology and called me to tell me I had breast cancer that afternoon.  Well after the bi-lateral mastectomy, which I insisted upon, they found not one, but three tumors - none of which showed up on a mammogram.  The largest tumor was a whopping 3.9 cm.  The smallest was 1.7 cm.  They all appeared in the same breast but different breast quadrants.  As far as I'm concerned, I was the patient that fell through the cracks.  The surgeon told me prior to the surgery that it would be very unlikely for a tumor that size not to have metastasized.  I consider it a miracle that I had 0 positive nodes of 13 (three of which were sentinal nodes).  My OB/GYN, whom I subsequently fired, was completely stunned.  I bet he doesn't take palpable lumps and thickened areas lightly anymore!

    By all means, do request additional tests if you feel any lump or thickened area.  Don't just take a mammogram at face value with dense breasts.

  • BrendaAreYouA4
    BrendaAreYouA4 Member Posts: 92
    edited July 2010

    Having a Breast MRI is the only thing that revealed a 2.3 cm mass.  Turned out to to be IDC.  I had very dense breasts.  Mammogram found calcification on left breast.  Biopsy revealed LCIS.  Onc said to take tamoxifen for 5 years and not  to worry.  Because biopsy report revealed tissue sample was 98% breast tissue and 2% adipose - I researched and found out about increased risks of developing BC and increased risk of BC going undetected until later stages.  I asked for a breast MRI.  Onc reluctantly agreed.  The MRI revealed the mass in my other breast!  Find out your breast density score.  If it's a four ask for another screening method (i.e. ultrasound, MRI).  

    Connecticut just passed a law which requires the mammogram report to patients to include information about breast density, risks, and requires insurance companies to pay for additional testing for women who have very dense breasts.  You can read more about it at www.areyoudense.org 

  • annamari
    annamari Member Posts: 82
    edited July 2010

    I live in a small town and there are many doctors who refuse to do breast exams and pap smears for their patients.  What a way for far too many women to fall thru the cracks.  Maybe we need more female docs or mammo clinics in regular xray departments.  Female cancers are far too many and need to be addressed by primary care docs.

  • Annabella58
    Annabella58 Member Posts: 2,466
    edited July 2010

    Get an MRI and an ultrasound also.  I have very dense boobs and mammogram gave me clean slate, so did the blood markers for cancer.

    My onc, on a whim, said get an MRI.  Well, imagine our surprise to find a 1.5 cm in there!  Not in the nodes, but caught just in time, as it was invasive type bc.

    Get a mammo then 6 months later, get an MRI.  If your insurance won't pay, pay for it yourself.

    It's a lifesaving double whammy!!.  Also get a pro to c heck your boobs for lumps every six months too.  Mine are fibroid minefields but better safe than sorry!

    My onc wrote a letter for the MRI and the insurance covered it bec. he did that.  Perhaps your onc can do the same.  General rule of thumb is to first refuse, then to say OK.

  • Sherryc
    Sherryc Member Posts: 5,938
    edited October 2010

    I too have dense breast tissue.  Had benign microcalcifications removed from left breast 13 years ago.  Have continued to have the califications and have been called back several times for more detailed views but all was ok.  This year was called back for more views and the radioligist suggested I have a biopsy.  Had problems getting the neddle loc biopsy so my surgeon gave me some options.  Both my surgeon and the radiologist did not feel these were cancer but wanted to check to be on the safe side.  One of the options my surgeon gave me was an MRI to rule out bc.  Well the calcifications were not cancerous but I had a 1.6cm X0.9cm IDC cancer that showed up in my MRI that did not show up in any of the momo's that I had.  It was right behind my previous scare tissue so no one had felt it either.  My surgeon said because of the location it would have had to get pretty big before I would have felt it. After that they check to see if it would show up in an ultrasound which it did.  I had a lumpectomy 2 weeks ago and am waiting on my oncotype dx to see if I need chemo or not.  My surgeon says that I will have MRI's as well as mamo's from now on because of my dense breast tissue.  Until this happened I had no idea how many people that mamo's do not show the cancer.  I have a friend that was stage 3 ILC and it did not show up on the mamo either (hers was right behind her nipple).  We are both thin people with small dense breast.  I think more education and medical protocal needs to be done regarding those of us that have dense breast tissue.  I have read more and more on this issue.

  • lago
    lago Member Posts: 17,186
    edited October 2010

    I had small, very dense breasts. My tumor was 5.5cm before they found it this spring. It's not the size that was the issue it was the density. Try and see if you can get an ultra sound too.

  • Annabella58
    Annabella58 Member Posts: 2,466
    edited October 2010

    I had a tumor not found by mammo, have extremely dense (had) breasts.  I now have mammos on the remaining girl and an MRI also on both yearly.

    US I skip, I just go straight to an MRI. 

  • lago
    lago Member Posts: 17,186
    edited October 2010

    Most insurance won't pay for the MRI unless a problem is identified or you are at high risk due to a previous breast cancer, BRCA+, etc.

  • leaf
    leaf Member Posts: 8,188
    edited August 2013

    I agree with Iago, except this 2007 paper by the American Cancer Society said there was not enough evidence to support for or against MRI screening for women with a personal history of bc, dense breasts, in situ etc.

    Screening MRI is recommended for women with an approximately20–25% or greater lifetime risk of breast cancer, includingwomen with a strong family history of breast or ovarian cancerand women who were treated for Hodgkin disease. There are severalrisk subgroups for which the available data are insufficientto recommend for or against screening, including women witha personal history of breast cancer, carcinoma in situ, atypicalhyperplasia, and extremely dense breasts on mammography.  http://caonline.amcancersoc.org/cgi/content/full/57/2/75

    I am NOT trying to say I agree with this paper; I find several inconsistencies in it.  (I guess I should expect that since it was written by a committee.)  I'm only saying that it looks like many insurance companies can use it to refuse to pay for screening with MRIs for patients with dense breasts, personal history of bc, etc.

  • lago
    lago Member Posts: 17,186
    edited October 2010

    Extremely dense breast tissue is not something the insurance companies will except as a legitimate reason for an MRI

  • Fearless_One
    Fearless_One Member Posts: 3,300
    edited October 2010

    My mammo never found my tumor which was 1.97 cm.   Get an ultrasound, even if you have to pay for it yourself.   They are not too expensive, not like an MRI.

  • otter
    otter Member Posts: 6,099
    edited August 2013

    This issue of risk associated with dense breast tissue came up (again) when I had my annual mammogram and recheck with my breast surgeon last month. 

    My mammogram (digital, diagnostic - 3 views) always come back "BIRADS-2:  no abnormalities".  It's BIRADS-2 rather than BIRADS-1 because I have some coarse, vascular calcifications that haven't changed for many years and are almost certainly age-related.  And, as usual, this year's reportt noted that the tissue in my remaining breast is "primarily dense (glandular) tissue."  That's what the report said for the mammogram that was done an hour before the ultrasound-guided core biopsy of the tumor we knew was there.

    Standard procedure at my breast center is to do an ultrasound if there is a palpable lump.  It doesn't matter who finds the lump -- patient, tech, or doctor -- the mammogram is followed immediately by ultrasound. I really appreciate that policy.  I also like the fact that the radiologists come out and talk to the patients, and they can act on what they find in an image without having to check back with another doctor first (i.e., if the mammogram shows something suspicious, the interventional radiologist will do a biopsy).

    This year, I asked the radiologist what "primarily dense (glandular) tissue" meant in terms of a density rating.  He said some centers use a BIRADS scoring system, but this center uses a 3-level rating.  The lowest density is recorded as "primarily fatty tissue."  Mine is the highest, he said.  I asked about using MRI, and he said I would need to get that cleared with my doc.

    So... I asked my breast surgeon about MRI (again).  We had the usual discussion, which followed what leaf said in her most recent post.  MRI's are not approved for screening in low- or moderate-risk, asymptomatic women.  But, high-risk women -- for instance, those with BRCA mutations or a lifetime risk greater than 20% -- would qualify for screening with MRI.

    I do not have a BRCA mutation; and my lifetime risk according to the GAIL model is ... oh, that's right.  I can't calculate my lifetime risk with any of the calculators, because none of them are valid for someone who has already had breast cancer.  As soon as you mark "YES" for "personal history of breast cancer," the software bumps you out with an apology:  "We're sorry, but you cannot use this method to calculate your risk if you've already had cancer.  Please consult your doctor."  Also, as leaf noted, the formulas don't yet take breast density into account.

    I pointed all that out to my breast surgeon during our conversation, and I asked her how I was supposed to calculate my lifetime risk.  She agreed about the frustration of the risk calculators not working for women who've already had BC.  She hesitated, and said, "Well, your risk is increased because you've already had breast cancer; but your risk is lower because you're on Arimidex.  However, your risk is higher because you have dense breast tissue.  So, ... let's see what your insurance company says.  Let's see if they'll approve an MRI."  I told her I would pay for it if my insurance denied it.

    A week later, I got a notice that my MRI had been scheduled.  Turns out, it was "pre-certified" by my insurance.  That doesn't mean it was approved, though, or that they will actually pay for it.  I had the MRI last week, and everything looks fine -- there was no evidence of an abnormality in my right breast (or anywhere else, presumably). 

    I'm waiting to see the "Explanation of Benefits", which ought to be arriving any day now. 

    otter

  • Caya
    Caya Member Posts: 971
    edited October 2010

    I am very dense breasted.  Had mammos yearly since age 40, no family history.  I just always felt my big 36 Gs (yes, that's G) would be trouble.  After a clean mammo and breast ultrasound in July 2006, I had a breast reduction in October 2006 (just after my 48th birthday) - my plastic surgeon found my 1.7 cm. tumour. 

    8 weeks later I had a mastectomy - and a breast MRI before the surgery revealed another 1 cm. tumour in the same breast.  I had to wait 8 weeks because I was still healing from the reduction and my BS was concerned about the possiblity of infection due to re-opening the wound too quickly.   I now have a digital mammogram in January and a breast MRI in July every year.  I have told every woman I know to DEMAND a breast MRI if they are dense breasted - hey, skip the mammo and u/s - they are pretty useless for dense breasted women, who are 4-6x more likely to get BC. 

    JMHO, from my personal experience.  I'm in Ontario, Canada, so my onc. just orders me the breast MRI every year, no worries about insurance companies etc. 

  • Fearless_One
    Fearless_One Member Posts: 3,300
    edited October 2010

    I wouldn't say ultrasounds are useless - it did find my tumor when mammo did not - however, I had felt the lump and was able to tell them where to focus.   So had I not had a clue, not sure if U/S would have caught it.    Oh- and had benign lump months later - very palpable - mammo never found it.   U/S did (thank God it was benign).

    MRI's are good, but you might have trouble getting them covered by insurance.

  • lago
    lago Member Posts: 17,186
    edited October 2010

    BTW MRI's have a tendency for false positives. They have not been using MRI's for all that long so it's still tricky for a diagnostic tool. The MRI showed 4 suspicious areas in my right breast. Only 1 was LCIS the rest were benign/cysts.

  • leaf
    leaf Member Posts: 8,188
    edited August 2013

    Just to point out one inconsistency in the paper, (I have LCIS, ALH and nothing worse, and a weak family history):

    Lobular carcinoma in situ (LCIS) and atypical lobular hyperplasia(ALH), together described as lobular neoplasia, are associatedwith substantially increased risk of subsequent breast cancer,with lifetime risk estimates ranging from 10% to 20%.45 ...While lifetime risk of breast cancer for women diagnosed withLCIS may exceed 20%, the risk of invasive breast cancer is continuousand only moderate for risk in the 12 years following local excision.4  http://caonline.amcancersoc.org/cgi/content/full/57/2/75

    (emphasis mine)

    This contrasts with info on this site One estimate is that the lifetime risk of developing an invasive breast cancer is 30-40% for women with LCIS, versus a lifetime risk of 12.5% for the average woman. Another estimate suggests that an LCIS diagnosis increases breast cancer risk to 21% over the next 15 years....If a woman with LCIS develops an invasive breast cancer, it doesn’t typically happen within a few years. Rather, it is more likely to happen over the long-term — in 10, 15, or 20 years or even beyond that. A woman with LCIS is considered to be at elevated risk for developing breast cancer for the rest of her life.http://www.breastcancer.org/symptoms/types/lcis/cancer_risk.jsp  (I know these were based on other studies.)  Controversy, controversy.

    Otter: there IS a breast  risk calculator for women with dense breasts (unfortunately not for women who have had breast cancer) - but it HAS NOT BEEN PEER REVIEWED (as he clearly states).  It is by a radiologist at the Univ. Alberta. Although this calculator is based on published risk statistics and methods gathered from peer-reviewed journals, this web page's specific methods and results have not been peer-reviewed. So, you should not use the results for medical decisions. The results are estimates. (emphasis mine).      http://www.halls.md/breast/risk.htm

    I am NOT responsible for any possible heart attacks, strokes, panic attacks, etc. resulting from the use of this calculator.   I got a VERY high reading (up to 90% without tamoxifen.) But it does give some visual mammographic examples of dense breasts, and information how the modified Gail model was calculated.

  • lago
    lago Member Posts: 17,186
    edited October 2010

    If I didn't have breast cancer, using that calculator the risk for developing breast cancer for my age would be between 1-2% in the next 5 years. Geez, why couldn't this be the lottery instead!

  • otter
    otter Member Posts: 6,099
    edited October 2010

    leaf, I've used the "Halls" calculator, too.  The problem is that, if the calculator (or anything else) hasn't survived peer review, much less being widely embraced by the medical community, the number it spits out won't be accepted by my insurance company as evidence of my increased risk.

    Iago, my breast surgeon, my med onco, and half a dozen radiologists have all been telling me that MRI is fraught with false-positives when it's used for screening in asymptomatic women who aren't at high risk.  I do understand that, and I understand why docs and insurance companies are concerned about screening tests that have high false-positive rates.  As my surgeon put it, "A 'positive' result [a suspicious finding on an MRI, for example] must be investigated -- it cannot be ignored.  It could mean a lot of unnecessary biopsies."

    Sometimes the "unnecessary biopsies" are a problem because of the investment of heathcare resources (i.e., $$$).  Sometimes they're considered a problem because of the pain, or even the "anxiety", they cause the patient.  (Never mind whether some statistician or member of a governmental review panel should be deciding the level of "anxiety" we can tolerate!)

    I've thought about those issues.  So, this time when my surgeon gave me the warning about all the "false positives" with MRI, I responded that I might not mind a "false positive" once in awhile, considering all the "false negatives" I had been getting with mammography.  That was when she decided to put the issue to my insurance company and schedule the MRI.

    otter

  • leaf
    leaf Member Posts: 8,188
    edited October 2010

    Good points, Iago and otter.

    Besides the 'should not be used for making medical decisions' parts of these models.  "Thus, for any given woman, the two models <modified Gail vs. another that included breast density> were better at prediction than a coin toss—but not by much." 2006  http://jnci.oxfordjournals.org/content/98/23/1673.full.pdf

  • Fearless_One
    Fearless_One Member Posts: 3,300
    edited October 2010

    Better a false positive than a false negative, like I had.   A false negative could kill you.   A false positive won't.

  • Annabella58
    Annabella58 Member Posts: 2,466
    edited October 2010

    I'd be very ill now if not for an MRI...on a "whim" I got one.  I think it may have a tap on the shoulder from an angel, as the mammo and US both missed a 1.5 invasive lump near the chest wall. 

    I'm an MRI fan and I have extremely dense boobs.  My dr. has to write me a script and argue with the insurance company yearly, but I get one.

  • lago
    lago Member Posts: 17,186
    edited October 2010

    Don't get me wrong I'm all for MRI's in denses breasts. They would have found my tumor long before it became 5.5cm. Also the MRI did find a 1mm DCIS that no mammo or US could find.

  • msippiqueen
    msippiqueen Member Posts: 191
    edited October 2010

    I also had extremely dense breast, they remained that way post menopause. Sure complicates discovery of breast problems as is witnessed in this thread.

    These days, when the subject comes up, I recommend getting baseline test of the breast at a major cancer center. Just pass go and save repeating tests that a cancer center will want do, no matter how recent the previous testing was. You are subject to the best and latest an a major academic cancer center.

    I knew this ahead of time and did not do it. Too much trouble to shlepp into Houston and I was getting mammos at a Komen center, the nearest 100 miles away. The rigors and trouble I experienced in my hometown and at Komen I'll reserve for another thread.

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