For Those with Dense Breast Tissue
Just a gentle reminder to all who have dense breast tissue. Mammograms do not work well for those with dense breast tissue. Many of us on this website had much larger tumors before diagnosed because we had dense breast tissue. Although many doctors now do MRIs for those with dense breast tissue, others do not. Please ask for a MRI if you have dense breast tissue. I wish that someone had told me about this increased risk. I had been followed by one of the leading breast surgeons in the US due to having had a previous lump (benign). He did not order a MRI. You must "paddle your own canoe". Send me a private message if you would like to discuss.
Comments
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I had the same experience and I sat next to a number of women in chemo who had the same thing happen, too. So I tell women too, not to count on mammograms, especially if they have dense breasts. (Misses tumors 50% of the time in dense tissue) Did you read on the Internet where a dr from Hopkins said trying to find a lump in a dense breast on a mammogram is like trying to find a blizzard in a snow storm? I'd thought that was cute. BTW, I have a website www.1UpOnCancer.com. All feel good, upbeat stories and resources. Hope you visit! Best and be healthy. Rachel
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I totally agree. I was an A/small B cup. My tumor was 5.5cm before they found it… and that was because I had bloody discharge. I know a MRI would have found it 4 years ago when they thought they saw something, did a US and Mammogram but claimed it was nothing. Yes I had really dense breasts.
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I'm relatively new posting and saw this post on dense breasts. I am the only one feeling DENSE now for not realizing how serious a risk it is to have dense breast. I had a benign lump removed in 1995, same breast. I have faithfully had mammos ever since and would argue to get an ultrasound on top of it if I thought I felt any new change. (Usually they were just cysts) My IDC was finally found was after a clear mammo this July ONLY because I went back to my ob/gyn and said I felt a new lump there. In reality, I didn't, I was just worried about not having had an ultrasound to confirm no new cysts. Fast forward to Oct and it was a 1.5 cm tumor that had managed to get to a node and create a 2mm tumor there. I saw my own films with the breast surgeon and it was there growing for 2 years if not more. In fact there was a greasepencil mark on one film in that area to point it out back in 2002. I also consistently went to the same well known mammo place year after year.
So here's my new dilema...I have had an MRI now and supposedly I don't have any other suspicious lumps but I just don't know if I can trust any of the tests. I am about to start CMF chemo but am debating whether to opt for a bilateral MX once I'm through the chemo.
BTW- My onc said chemo doesn't reach well into dense breast tissue and I can believe that because I still have bruising in my good breast that hasn't dissappeared 2 weeks after the port placement on that side.
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This is absolutely true and my story is almost exactly Lee7's. I went for years for mammograms that never showed my lump. I had two biopsies, so I absolutely should have had MRIs. They don't like to give them. They are expensive, and mammography is the name of the game. The whole thing feels like a Monopoly game!
Mammography, they do say, can be important to pick up calcifications that could show up even before MRI. In my case, my lump had nothing at all to do with the microcalcifications in other parts of my breasts.
Regarding chemo and breasts, that is disappointing. However, the main function of chemo, as I understand, is to get cells that are fatally outside of the general breast region. Radiation, on the other hand, deals with local.
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MHP70
I think you've replied to me on another thread about radiation. I've sort of resigned myself to chemo but I really wanted to avoid the radiation...lump was on the inside left side...because I'm afraid of having any heart damage. I am thinking a BMX after chemo might mean I can opt out of the 33 rad txs that go with a lumpectomy.
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Hi, Lee--wish I had more info to report on radiation, but I have seen even more information on new technologies and radiation, and they report heart damage as "rare" in the SE category. I will let you know if I find out anything else from my radiation oncologist, I want to ask him point blank what he can tell me about what they did to my heart (and lungs). If anything meaningful.
As my radiation assistant said when I asked about radiation causing cancer, "you did a lot more damage to yourself with chemo". While the guy has the bedside manner of a snake, it's good to think about where we are actually hung up on things, or are really evaluating them from a researched standpoint.
So hard!!!! I wish you so much luck with your decisions. It's easy for me to say "do it all", as that's what I did. But I don't think there are trully right or wrongs here. The other issue that concerns me, though, in your diagnosis is the fact you had positive nodes. Just ask a ton of questions.
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Seriously. Same thing here. Every year clear mammos. Only by chance my gyn thought he felt a thickening & ordered follow-up ultrasound. Then after biopsy, surgeon ordered MRI and it found a smaller satellite mass that BOTH the mammo & ultrasound missed! I wonder if some class action lawsuit wouldn't get the medical community's attention to start using MRIs as screening in addition to mammos. Is that not malpractice? I was told my cancer had probably been growing for several years - totally occult to screening. The Susan Komen and other groups better get on this bandwagon to get the word out. I tell every woman I know now to insist on an MRI.
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I was one who did not get mammograms.I found my lump and my journey started.One thing I want you all to be aware of,my first mammogram was of course diagnostic,since I had the lump.The doctor of radiology who read my mammo,never mentioned my dense breasts,nor did he at my follow up the next year.This year I went to a different facility for my mammo and report came back stating that I have very dense breasts and should have MRI in the future.It worries me that other women are most likely not being told they have dense breasts.
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Thanks MPH70,
Please do keep me up on what you find out from your radiologist. It does scare me to hear him say, chemo did more harm because I am terribly afraid of it. About asking tons of questions....I do but what has already happened is I am being told not to ask so many questions and to not be worried so much about side effects. However, I questioned ACT chemo in my case and next appt he suggested CMF. I also ended up doing what they advised and getting the whole AXL dissection and a port put in...but here I've read many don't need the AXL after SNB or the port for doing CMF. I'm not sure where the docs are coming from sometimes on the tx plans.
Janet and Pandazankar I was told I had dense breasts but....no one really ever said it meant they might not see a cancer as long as I kept up with my mammos and ultrasounds.
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Thanks Melissa. I hope many women read your post and demand a MRI.
I had dense breasts. They are both gone now. I went from a clear mammo in jan 09 to stage IIIC by summer. Despite a family history of bc and dense breasts, an MRI was never suggested or offered. I remember having one a few years ago for a back injury and a tiny voice in my head was saying "ask them to scan your breasts".
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I have a question even tho I have already dealt with the solution (preventative bilateral mastectomy this past Oct)
If a woman has dense breast tissue (as I did; and no one warned me prior to my 2003 breast cancer) do the breasts lose the denseness after menopause? Somehow I had the factoid in my head for the 7 yrs that I kept my breasts post-lumpectomy. I had gone thru chemo-pause at age 47. I honestly don't know if that is fact. Maybe one of you erudite ladies know?
I don't pretend to give advice about PBMX. It was right for me. I had triple neg cancer; so that was a factor. I had to fight so hard for MRIs b/c the docs did not want to fight the insurance company. I finally found a breast surgeon in a breast center; she had a physician's assistant who spent most of her day arguing with insurance companies. I knew that at 65 (ten yrs from now) I would be ineligible for the contrast dye since it is metabolized thru the kidneys.
I only wish I had made the PBMX decision seven yrs ago; rather than go thru the radiation. that was extrememly difficult for me; and left me with a painful distorted breast. But that is not the norm. Hindsight is always 20/20. I really wanted at lease a unilateral MX in 2003; my BS refused. I was the type who picks a doctor I trust to make decisions. But then that bs refused to order more than one MRI so I went elsewhere. so much for picking a doctor you trust. You have to be your own advocate.
As for CMF, it was not nearly as bad as other chemos. I lost some of my hearing (wear aides now) and my bone density is so low I have osteoporosis (not just osteopenia) Were these the result of CMF? Probably. Since I am only 55 and no one in my family has these issues, I tend to think CMF caused them. But CMF also kept any loose, highly aggressive breast cancer cells from multiplying elsewhere in my body. So, no regrets whatsoever.
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I disagree with the radiation tech's cavalier remark that "chemo did more harm than radiation". I think that statement should be mentioned to the radiation oncologist as the tech probably says it to many patients. He may have meant to allay your anxieties about radiation; but it is a loaded comment in that it raises major concerns about the long-term effects of chemo.
the tech's job is to deliver the treatment exactly as prescribed. Not to make a judgement on the merits and dangers of different treatments.
Your concerns about radiation (I forget who posted this story) were legitimate. Esp if the left breast (above the heart) is being radiated. With today's specificity of the radiation beam; I made an informed decision to go ahead and do it. But the tech's response was dismissive. and not accurate. I went for my radiation treatments every day with a woman who's son was a pulmonary (lung) specialist. the son was strongly against the mom's decision to undergo radiation b/c he had seen some very rare cases where radiation pierced the lung. He mentioned the risk/benefit ratio and did not feel the benefit was high enough for the risk. Of course, that depended on her unique breast cancer situation. there are other times when the benefit far outweighs the risk My point being, that your tech was not in a position to make that judgement.
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That's me Eileen, about the radiation to my left inner side and I'm also the one facing CMF. So I'd really like to stay in touch!
I've also talked about just doing bilatMX after I'm done with chemo to avoid having the radiaton tx and further issues with my dense breasts.
I'm just trying to make it through this one breast dx and I can't even imagine having to do it again for the other breast.
About your hearing...Could it possibly be a SE from the steroids(Decadron) or from Zofran(anti nausea meds)? I have to ask becuase I have a dull ringing in my ears ever since surgery, and those are the only 2 things I got during surgery that I never had before. It's weird and scary to think CMF might make it worse now.
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The **trend** is for women to lose breast denseness post-menopausally, or, as they age. This study found that as a group, postmenopausal women had much less breast density than premenopausal women. http://www.ncbi.nlm.nih.gov/pubmed/18385204
I didn't realize this, but lobule atrophy and mammographic breast density apparently are two different things. I guess sometimes they vary together, and sometimes not. I don't think they understand the biology.
Lobules tend to atrophy as women age. This study opines that both breast density and lobular involution (age related lobular atrophy) are *independent* risk factors. (In other words, high breast density and low lobule atrophy both produced higher breast cancer risk.) http://www.ncbi.nlm.nih.gov/pubmed/21037116 ,http://www.ncbi.nlm.nih.gov/pubmed/20351335
In this study, " Annual rates of decline were 1.4%" http://www.ncbi.nlm.nih.gov/pubmed/19924817
I know there is at least one poster here who said she is postmenopausal, and she had had very dense breasts all of her life. They haven't decreased in density. So you may have a different experience than the mean.
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I used to think dense was good because my breasts kept their shape but now I know even small sizes can hide cancerous lumps.
I'm post menopause 3 years and dense as ever...My breasts, not my head hopefully.
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i have one dense breast, and that's where i got cancer. but i had neo-adjuvant chemo (AC+T) and a complete pathological response, so i don't think it is true that chemo doesn't work on dense breasts. At least not in my case...
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Eileen, you are so right. I need to make a follow up with my radiation oncologist, and I should definitely say this to him. Because the truth is, it was a statement that stuck with me. If I had a dime for every dumb comment made along the road...
Tamoxifen also decreases breast density, so I've heard. When I consider why I think I got this in light of no real risk factors besides breast density (which some believe may be a risk factor, as the density may act like fertilizer), Tamoxifen absolutely made some sense to me.
As for the other decisions, I'm not like some folks here who believe "blasting it" is the best way to go. There's a lot of work to be done on how chemo actually works, and whether any of these treatments lend themselves to long-term survival in Stage 1 and 2 environments. I chose to go whole hog because I was diagnosed under 40, and noted duly that not a soul on here under age 40 it appeared to me stepped off the treatment grid. It is what it is, at least for now.
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Doctors need to take dense breast tissue more seriously and do a separate study to determine whether we should have mammograms at all-- each time I have a mammogram, they bring me back for a couple of extras because they are uncertain about something they see -- and then they ask me to come back in 6 months, when, again, I get extra mammograms. My guess is that we are the group of people where mammograms may cause as many breast cancers as they catch. Is anyone aware of a controlled scientific study of mammograms specifically with women with dense breasts that demonstrates they do significantly more good than harm? In any case, I don't want to have another mammogram-- a doctor offered me a sonogram when I asked for an MRI, not sure what to do.
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Lynnn--I always have an ultrasound with my mammogram, are you saying you don't? It seems like some women don't. The ultrasound can trace what looks suspicious on the mammogram. In my case, they didn't hone in on my tumor, as it was in the snowstorm of dense tissue. The ultrasound just glided over it for years.
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Is anyone aware of a controlled scientific study of mammograms specifically with women with dense breasts that demonstrates they do significantly more good than harm?
Hi Lynnn: I think that your question is very important, but I think it would be very hard to do a direct study. We can't tell if breast cancer in a patient that has been followed by mammography is from mammography or because of some other cause. We can only do population studies. In order to look at the patients with dense breasts, they have to have had a mammogram. You could take a subset of the women who had never had mammograms and give them one, select out the women with dense breasts, and follow them. But that's going to take a very long time. We can only follow models, which are imperfect. There is no 'safe' dose of radiation (where there is no chance of mutations occuring), but we are all exposed to radiation no matter where we live.
I have no idea if this study is biased or not, and it does NOT specify anything about breast density, but it claims:
Two-view digital mammography and screen-film mammography involve average mean glandular radiation doses of 3.7 and 4.7 mGy, respectively. According to BEIR VII data, these studies are associated, respectively, with LARs <lifetime attributable risk> of fatal breast cancer of 1.3 and 1.7 cases per 100,000 women aged 40 years at exposure and less than one case per one million women aged 80 years at exposure. Annual screening digital or screen-film mammography performed in women aged 40-80 years is associated with an LAR of fatal breast cancer of 20-25 cases in 100,000. http://www.ncbi.nlm.nih.gov/pubmed/20736332
For a cohort of 100 000 women each receiving a dose of 3.7 mGy to both breasts and who were screened annually from age 40 to 55 years and biennially thereafter to age 74 years, it is predicted that there will be 86 cancers induced and 11 deaths due to radiation-induced breast cancer. Conclusion: For the mammographic screening regimens considered that begin at age 40 years, this risk is small compared with the expected mortality reduction achievable through screening. The risk of radiation-induced breast cancer should not be a deterrent from mammographic screening of women over the age of 40 years.http://www.ncbi.nlm.nih.gov/pubmed/21081671
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Lynn-----ideally, all women with dense breast tissue (which is most women under age 40) should be given MRIs, but realistically that isn't happening because of the cost. Mammos are the standard of care at the present time. If you can't get an MRI, I would at least try to get an US in adition to the mammo.
anne
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I am completely new to this whole process. I am 38 years old and am now on day 14 days post bilateral mastectomy. Both BRCA1 & 2 familial history, mother just recently diagnosed Stage 1 and I had dense breasts...for the last 2 and 1/2 years I have run the gauntlet with biopsies, lumpectomies , doctors, mammograms, ultrasounds, needles and a whole lot of attitude (by radiologists and non listening docs). I am waiting for for first fill of the tissue expanders and I don't know what questions to ask, where to ask, and how to begin. I feel that I shouldn't be overwhelmed...but I am. I was told by mother in laws friend; to come here for questions and help....My Aunt is in Stage IV and I am worried about her...and she worries about me; I am struggling with all the unknowns. Sorry to ramble, and thanks.
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lee; I never had steroids when I was on CMF. And I only took the anti-nausea drup once each cycle. I never heard it could affect my hearing; did you read that somewhere? eileen
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leaf; thanks for the in-depth answers you give. I appreciate the time you put into your posts. I haven't caught up on reading all the data was I have flagged the citations.
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Evelyn; take a deep breath; now exhale thru pursed lips. Repeat 5 times.
congratulations on making the decision to do the BMX!!! Kudos to you for making such a life-altering decision at such a young age. It sounds like you had sound reasons to do it. Not sure if the surgery was preventative? I know of a young woman who is avoiding genetic testing even tho her mom has had bc with lymph node involvement. the mom is an ashkenazi Jew and has an aunt who died of ovarian cancer. So the mom and the young adult female are in total DENIAL due to fear. Not easy to step up to the plate and take responsibility for dealing with life's curveballs. But you, Evelyn, faced that battle head on.
14 days post-mastectomy I felt like crap for some reason I thought I should be doing better so I blamed myself. Now I wish I had read books, watched videos, whatever.
Your aunt gave you the right advice to come here. Keep us in the loop so we can help you along. BTW use a terry cloth robe to dry yourself after a shower. I wasted my limited arm energy rubbing myself dry. I did not have recon so I cannot advise you on that issue. Have you tried the December Mastectomy thread?
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I write separate posts b/c I hate when I lose one and there is no back-up copy. Maybe someone can help me with that.
As for u/s with mammo, the u/s is only as good as the person who is doing the scan. I always went to a radiologist in Manhattan.
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Ladies, I am another one with dense breasts. I was a small B cup and went for mamos yearly, also sonograms. I had a 6cm tumor sticking right out of me and Still it was not pick up on sono or mano. I had a MRI but not until my insurance ok ed it. So it must have been growing for years. It makes me sick the false sense of security after each years mano.
I also had a complete Pathology response and my tumor was large so chemo did its job. I think if you have dense breast you automatically have a MRI. Betty
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Neither of my two, 2.5 cm lumps could be found on a mammogram (my first at age 37). An ultrasound found them, and a MRI found other areas in the one breast. The other was clean as a whistle. So after my left mastectomy, I asked myself how and why would I ever trust just a mammo again? No one else brought this up, mind you.
I have to wrestle with my drs each year--seems like even they have a short memory on my particular case--but so far have always managed to get an MRI. My insurance makes me get a mammo first, so I do that but then insist on the MRI. I had to fight for insurance to pay it the first time, but I had the dr send them my original mammo that showed nothing and then the ultrasound and MRI that followed on top of it, and they paid. I'm thinking/guessing/hoping having it approved that once is acting like a precedent--they've automatically paid every year since.
I don't think many dr's actually tell patients if they have dense breasts, and I don't think it appears in such plain language on most mammo reports. I've learned that "areas of fibroglandular tissue" or something like that means dense breasts. I've taken tamoxifen for 3.5 years, but I'm still dense.
Yeah, we need new breast screening methods that work for dense breasts, and we need to make them available to all women starting much earlier than age 40. Until then, MRIs should be offered routinely to younger women.
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Just a word of caution about ultrasounds, to follow up on Eileen's post -- make sure the person doing the ultrasound is an actual radiologist, not a tech. Ultrasound is extremely difficult as a screening technology and is usually only used to follow up on a suspicious lump.
Melissa
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I asked the radiologist when I had my last biopsy how dense my breasts are. He said, 'Dense, but not extremely dense.' Hopefully, if you're able to personally speak to the radiologist after a routine mammo, they would be willing to tell you. Here's a website that has pictures of breast density, and claims patients can estimate for themselves (but I wouldn't want to do so.) http://www.halls.md/breast/density.htm
I don't advise using his breast risk calculator though- it hasn't been compared to populations, and is not peer reviewed. I got a breast cancer risk some 3 times higher than my other sources.
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