6 X More Likely to Get BC - Call for Action
Breast density is considered a key factor in determining whether a woman will develop BC. Women with dense breasts, meaning the breast tissue is composed of primarily breast tissure, are up to 6 times more likely to develop BC. Having dense breasts is a greater risk (up to 6 times greater) than even having a first degree relative (i.e. a mother or sister) with BC (your risk is then 2 times greater).
If you have had a mammogram you have probably had your breast density measured. Radiologist use the information in helping them to determine the reliability of the mammogram -- the higher the density the less reliable the mammogram. Women with dense breasts are up to 6 times more likely to have their BC go undetected (by mammograms) and are consequently identified at later stages of cancer progression.
Why aren't women aware of this? I never knew this and I consider myself an educated woman. Women need to know this information!!!!
One explanation for why women are not given information about their breast density is because then it would scare them too much and they can't do anything about the density of their breasts since it is related to heredity and age.
What lame thinking is that??? If I knew I had dense breasts I could have asked for an MRI or ultrasound in addition to the mammogram. According to radiologists, in women with dense breasts finding tumors with mammograms "is like trying to find a polar bear in a snowstorm at the North Pole. You just can't see them (the tumors)." I asked an oncologist "Shouldn't women over a certain threshold ___ (say 75% but we'll let the medical community determine the threshold) be given MRIs or ultrasounds to determine the presence of cancer given that they are up to 6 times more likely to develop cancer and up to 6 times more likely to have cancer missed on mammogram screenings?" He agreed that they additional screenings should be done but explained that it would be too expensive...
But...But...But isn't it too expensive to not give MRIs or ultrasounds to women with dense breasts? By not doing MRIs or ultrasounds to detect cancer in women with dense breasts we are postponing diagnosis of BC until it has progressed to a later stage. Isn't it more costly, monetarily to wait? Isn't it more costly to treat late stage versus early stage breast cancer? And what about the 'cost' to families who lose their mom, sister, daughter, aunt, grandmother, and/or wife because MRIs for women with dense breasts are too costly???
I think it is an atrocity that women don't know this information. We know that if we have a mother or sister with breast cancer we are at greater risk. (up to 2 times greater risk.) But why don't we know that having dense breasts makes us up to 6 time more likely to develop breast cancer and up to 6 times more likely for it to go undetected???
I think we need to start a revolution in Breast Care and here are some of the things we need:
1)Doctors - Tell women the density of their breasts
2) Breast Care Community - determine a threshold for triggering MRI/ultrasound detection in women who meet the treshold.
3) Use MRIs and/or ultrasounds to screen for BC in women with dense breasts.
4) Educate - Every woman with breasts should know that breast density is a critical factor in determining the whether she develops BC -- It's even more important than having a mom with breast cancer!
I don't know how to go about making change in health care, insurance, laws, etc. but maybe together with all the knowledge we have (there are 70,000 members on this site!) we can get the ball rolling.
Did you know breast density was related to BC? Did you know this before you got BC?
Can you help?
What should we do next?
How do we change this?
Do you think things need to change?
Are you a woman with dense breasts that went undetected?
Are you a lawyer? Where do we start?
Please comment on any or all of the above. I would love to make a difference in just 1 woman's life or maybe even in the lives of many. Together I think we can do that!!!
Please see the new Connecticut law that requires that women be informed, in their mammogram report, when they have dense breasts and requiring insurance companies to pay for the additional screenings (MRIs and/or ultrasounds) posted below.
Please visit www.areyoudense.org to learn about breast density facts and Connecticut's new laws regarding informing women when they found to have dense breasts on mammograms and requiring insurance companies to pay for additional screenings (i.e. MRIs and/or ultrasounds).
NonniO - thanks for providing the website www.areyoudense.org to us!
Comments
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I'm one of them: dense breasts, mammogram didn't find squat, I found lump myself, and MRI confirmed it. I'm not a lawyer, but I am an activist!
I did know breast density was related to higher risk. I had NO idea how much. Could you clarify the density vs. first degree relative risk? Should we parse that out in percentages? 6x greater than a woman who has a first degree relative, or 6x greater than general public?
A letter writing campaign to all of the major organizations seems a good first start!
I can say this: had I known then what I know now, I'd have paid out-of-pocket for MRIs, and I'm furious no one even mentioned they were a better diagnostic. I'd have paid anything to have found this earlier, and perhaps averted the life altering horrors of chemo.
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Okay, I'll take the bait.
1) Did you know breast density was related to BC? Yes.
2) Did you know this before you got BC? Yes, I knew it before I was diagnosed with BC 2-1/2 years ago. I learned about the relationship approximately 3 years ago. The knowledge would not have made any difference in my care, though, because I did not know at that time that my own breast tissue was "very dense." No one told me until after my breast lump had been biopsied.
3) Can you help? I doubt it. I've already talked to my breast surgeon and my med onco about this, and they both said there isn't enough evidence to support routine use of MRI's for screening in healthy (asymptomatic) women. They say the false-positive rate with MRI on a clinically normal breast is too high. My cancer center is an NCI-designated comprehensive cancer center, so my docs are not exactly working in the dark ages. The problem is that the national guidelines on breast cancer surveillance do not yet include breast density assessment or recommendations for follow-up procedures in women found to be at high risk because of dense breast tissue.
4) What should we do next? I will probably ask my breast surgeon about this again when I see her for my next routine mammogram and follow-up visit.
5) How do we change this? The only way I see the situation changing is if the following things are accomplished: 1) There has to be an objective, reliable, reproducible way to measure and report breast density. This has not happened yet. Only when there is such a method can controlled clinical studies be done to see what the risk really is, and to compare the results of different studies. 2) The major cancer organizations (ASCO, ACS, radiologists, etc.) have to agree that breast density is a significant risk factor that should be taken into account when assessing risk of breast cancer or its recurrence. Then, they have to include the measurement of breast density in their screening guidelines; and they have to recommend additional imaging (ultrasound, MRI, BSGI) for those women whose breast density puts them at high risk. 3) Finally, insurance companies here in the U.S. and medical advisory boards here and elsewhere need to support breast density assessment as a routine part of breast cancer screening; and they have to authorize payment for the screening and for follow-up imaging procedures if a risk threshold is met based on the breast density findings.
6) Do you think things need to change? Of course I do.
7) Are you a woman with dense breasts that went undetected? I wouldn't say my dense breast tissue "went undetected." The radiologists who had been reading my mammogram films for the previous 20 years surely knew about it. The problem is that they did not tell me about it, much less point out the risk it posed and the probability that mammography would not detect a tumor in my breast. Perhaps they reported my dense tissue on the radiology reports they sent to my gynecologist; but he never mentioned it to me.
8) Are you a lawyer? No. Sometimes I wish I was.
9) Where do we start? I really don't know.
otter
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According to an article I just read (www.latimes.com) from 6/21/2010 in Connecticut they passed a law last year that requires that patients must be provided with "breast density information" when they are given their mammogram reports.
My understanding is that women with dense breasts are up to 6 times more likely to develop breast cancer than women without dense breasts. Women with first degree relatives are 1 to 2 times more likely to develop breast cancer (than the general population - I guess). I don't know how to compute this into percentages but I'm going to ask my Onc when I see him. He's at a major research center that is part of the National Cancer Institute.
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I read that there a student/professor developed a method using mathematics to predict with amazing accuracy breast density. The cost of including the information with mammogram results was projected to be less than $5. I am going to try to find it.
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I was 39 when I was diagnosed. I went in because I felt a lump. I had a mammogram and an ultrasound. The radiologist said there was nothing there but sent me to the surgeon for him to check everything out and give the last word on in. One of the things the surgeon mentioned to me, several times, was that because of the density of my breasts it was hard to be certain that nothing was there. As he was looking at the breast using an ultrasound, the surgeon saw a small area that he said was probably a cyst but he did an FNA just to be sure. Well, it came back as grade 3 cancer. He sent me for an MRI and it showed a 5 x 7 centimeter mass that the mammogram and ultrasound didn't pick up. most of that was dcis, but that tiny spot the doctor aspirated had already started to spread to surrounding tissue and the lymph nodes. if I had come back in 6 months (which is what the radiologist had said to do) I would have been stage IV instead of stage II. I thank God I have an awesome surgeon who wanted to make sure he didn't miss any thing.
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I have to tell you I feel like I put too much faith in my annual mammography. Everytime I got the "all clear" report I was happy. Then one Friday night I find a lump, my OB couldn't find it and when she did she thought it wasn't suspicious at all. When I went in for the diagnostic mammo they had to use a marker to find it.
When I met with the breast surgeon he told me that on a scale of 1 to 10 the density of my breasts is a 9. HUH? No one ever mentioned this! I asked why the mammo's never said anything and he told me that unless you state they you have a problem (pain, lump etc) they don't mention anything else!
I wonder if more then an annual screening is better for dense breasts, maybe and ultrasound? I have no idea. But, seems like something needs to be done.
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I have been having mammograms since I was 35. In July 2009 I was told by the tech "wow, you have dense breasts." I had to have a biopsy because of calcification. The biopsy results indicated that I had LCIS and that the tissue sample was 98% breast tissue and 2% fat. I researched dense breasts learned that if you have dense breasts you are 6 times more likely to get BC and 6 times more likely for it to go undetected. I was sent to an Onc for the LCIS she suggested Tamoxifen for 5 years and not to worry. I told her I was already worried because I now knew I had dense breasts and that it was 6 times more likely to be undetected. I asked for an MRI and she reluctantly agreed "if it would make me feel better."
My instincts were right. The MRI revealed a mass greater than 2 cm that was consistent with malignancy. In September I had a bilateral mastectomy. The tumor was 2.3 cm and was IDC. I had chemo (CT X 4), had my ovaries removed, and am on on an AI for 5 years.
In the end I had stage II cancer. If I had known about breast density I would have paid for an MRI years ago and maybe then it would have been DCIS or stage I...
If only I had known I could have been proactive...
Maybe we can help others get information that is critical to their breast health
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brendaskids,
You've said several times now that women with dense breasts have a 6-fold higher risk of developing breast cancer:
"Women with dense breasts, meaning the breast tissue is composed of primarily breast cells, are 6 times more likely to develop BC. Having dense breasts is a greater risk (6 times great) than even having a first degree relative (i.e. a mother or sister) with BC (your risk is then 2 times greater)."
"I researched dense breasts learned that if you have dense breasts you are 6 times more likely to get BC and 6 times more likely for it to go undetected."
I hope you won't be offended if I ask where you got that number. I've read quite a few articles in medical journals about breast density and its relationship to the risk of breast cancer. The "6 times more likely" number is at the very highest end of the range of everything I've read. Also, that number only applied when the risk of BC in women with the greatest amount of extremely dense breast tissue was compared to the risk in women with breasts that had no dense tissue at all. In other words, it was a worst-case scenario.
So, although I agree with you about the increased risk associated with dense tissue and the need to start using that information in risk assessment, I wonder if maybe the numbers being used here could be creating more alarm than is warranted. Please don't misunderstand -- I think our docs and the medical system are underestimating the risk. But, to keep things clear, I sure would like to know where you got your information.
otter
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Otter,
You are right. It should say up to 6 times more likely to develop BC. I have tried to find the original source of this information but haven't yet however this number it is noted in many articles including the the Los Angles Times article from Monday (6/21/10). Does anyone know the source for this claim -- other than me of course!!!
Otter I understand and am not offended. I don't want to be an alarmist but the I do want to make sure women know this alarming information and can then choose themselves in how to proceed. In this case, knowing your breast density, information is power, and potentially life saving!
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I found the 2 new laws in Connecticut that went into effect on 10/1//09 (I was in a hospital recovering from a bi-lateral mastectomy).
Essentially the law states that in Connecticut if you have dense breasts your doctors must tell you and you are entitled (insurance companies must cover) additional detection tests including MRIs, ultrasounds, etc.
How do we get this 'act' in all of our states???
Here is the Connecticut Act - sSB 458
An Act Requiring Communication of Mammographic Breast Density Information to Patients
Summary:
This bill requires all mammography reports (i.e. written results of a mammogram) given to a patient on or after October 1, 2009 to include information about breast density based on the American College of Radiology's Breast Imaging Reporting and Data System (BIRADS). When applicable, the report must include the following notice:
"If your mammogram demonstrates that you have dense breast tissue, which could hide small abnormalities, your might benefit from supplementary screening tests, which can include a breast ultrasound screening or a breast MRI or both, depending on your individual risk factors. A report of your mammography results, which contains information about your breast density, has been sent to your physician's office and you should contact your physician if you have any questions or concerns about this report."
Effective date: 10/1/2009
Background
Federal Requirements for Mammography Report
The federal Mammography Quality Standards Act requires a mammography facility to provide a mammogram report containing the imaging results to the patient and the patient's health care provider within 30 days of the exam. The physician's report is a clinical in nature, but the patient's report must be in plain, easy-to-understand language. If the result is "suspicious" or "highly suggestive of a malignancy" the facilty must make reasonable attempts to communicate with the patient and health care provider as soon as possible (42 USC S 263b(f)(1)(G)(ii) and 21 CFR S 900.12 (c)(2),(3)).
BIRADS
The American College of Radiology collaborated with the National Center Institute, the Centers for Disease Control and Prevention, and the American Medical Association, and others to develop BIRADS, which is used to standardized mammography reporting. There are two BIRADS scares: one characterizes breast density and the other characterizes a radiologist's reading of what he or she sees on a mammogram. The breast density scale ranges from 1 (no areas with tissue that could obscure cancer) to 4 (tissue that can obscure cancer in more than 75% of the breast).
Related Law Mandating Insurance Coverage
By law, individual and group health insurance policies must provide coverage for at least (1) one baseline mammogram for a woman age 35 through age 39 and (2) one annual mammogram for a woman age 40 or older.
The policies also must cover a comprehensive ultrasound screening of an entire breast or breasts if (i) a mammogram shows heterogeneous or dense breast tissue based on BIRADS or (2) a woman is considered at an increased breast cancer risk because of family history, her prior breast cancer history, positive genetic testing, or other indications her physician or advanced practice registered nurse determines.
The law specifies that the required mammogram and ultrasound benefits are subject to policy provisions applicable to other covered services.
Applicability of State Insurance Benefit Laws
Due to federal law (ERISA), state insurance benefit mandates do not apply to self-insured benefit plans.
COMMITTEE ACTION
Insurance and Real Estate Committee
Joint Favorable Substitute
Yea 19 Nay 0 (2/10/2009)
So there it is sisters...What a great thing they did in Connecticut. So...I'll take NH. Who'll take the other 48 states??? Too bad it couldn't just get past at the federal level. Any one have connections with Obama???
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Wow, I had no idea that having dense breasts put me at a greater risk for bc. I had been told I had dense breasts but never knew anything about the risk. I faithfully saw my OBGYN every year and had my yearly mammo and I thought I was doing everything right. Wished I'd known as I would have been more proactive. I'll be passing this info on to my friends.
Kim
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I am embarrassed to admit that I did not know this. Geez....
So, I started doing some reading on the subject. I thought that I'd pass along a link for others like me to get started...
www.ncbi.nlm.nih.gov/pubmed/19107441
Some additional related citations should also show on that page.
Thanks for the knowledge.
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Don't be embarrassed! I think the majority of women, and men for that matter, don't know this! Thanks for the link!
Brenda
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Hi Brenda,
Regarding the risk assessments: I'm not a genius, but I'm not stupid, either--and it's taken me a long time to figure out how relative and absolute risk applies to every piece of information tossed our way. Add that to known specialists throwing numbers around without enough info, and it's hard to say exactly where the chips fall. My new favorite: Northrup declaring women who take Tamoxifen have a 40% chance of getting another cancer in the other breast--talk about alarming! It's 40% higher than a rare form of the disease. Which is probably a single-digit risk for BC patients.
I'm eager to know! If this is true, then the medical community it seems to me has all the evidence they need to use MRI as a third diagnostic. I know it ain't that easy, but in my case, it was so very cut and dried.
As I mentioned, the only thing that gets my litigious bone going is that I was never told MRI was even and option. It absolutely should have been, and here I am, facing huge expense (my own, and the insurance company's) and pain and suffering. With the cost of two MRIs, I could have potentially saved my insurance company tens of thousands. Also in my case, the MRI was spot-on. No false positives, showed my tumor clear as a bell. I shudder to think what would have happened if I hadn't accidentally found my lump, because I put ALL my faith in my 6-month check ups.
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Just thought I'd mention that I too have dense breasts but never realized it until after my diagnosis and I was shown the full mammogram report. For more information about breast density go to the following website that was created by the woman who was responsible for the Connecticut legislation. www.areyoudense.org
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NonniO,
I just visited the site www.areyoudense.org. It's excellent. I never knew I had dense breasts until after my biopsy. Then an MRI found cancer in my other breast that was missed by the mammogram just 2 weeks before. I wonder how many women on this site have dense breasts and developed breast cancer and still don't know that they have, or had (before the mastectomies) dense breasts. I would guess that the number might be substantial.
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MHP70,
I feel your pain and understand your frustration. You should have been given this information about your body and mammograms. Be sure to tell all your friends. Maybe you'll save a life. Literally!
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LEAPFROG39,
OMG your story gave me goosebumps and a lump in my throat. Thank God you didn't wait and that you had such a great surgeon.
Brenda
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Oh, count me in. I had a clean mammogram and breast ultrasound in July 2006. Had a breast reduction in Oct. 2006 - my PS found my 1.7 cm. tumour. No family history, good health, 48 years old, premenopausal - very dense breasts. All the docs say that reduction saved my life- I was stage 1, within a year or two probably would have been stage 4.
A big study done at Princess Margaret Hospital in Toronto, Canada (one of the 5 top cancer hospitals in the world) in January 2007 found that dense breasted women are 4-6x more likely to have breast cancer. As far as I am concerned, why don't they just go straight to the breast MRI for us dense breasted gals - skip the useless mammos/ultrasound - TOTALLY USELESS.
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Caya,
I wondered about that exact same thing. If the mammogram isn't reliable for women with dense breasts why do they keep giving them??? Why not tell women that they have dense breast tissue and other screening methods are more reliable? Part of it might be that breast density does decrease as we age. You are so lucky to have had that reduction. I hate to think about what might have happened otherwise. I hope you are doing well now. I think you should be in charge of getting this passed into law in Canada!
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I think the temptation here is to think of the MRI as a cure all for dense breasts. It's another method, but not foolproof by any stretch. It does a lot of false positives, and negatives. If you read Dr. Love, for instance,the call is for better screening in general ,because none of them are great. While there's a lot of hope for thermography, it doesn't pick up all cancers, either--not all cancers are heat emitting.
That said, in my case, MRI was the ONLY way to go. The ultrasound can identify the nature of what I point out, but clearly didn't find my lump.
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Very interesting thread. Thanks for starting it. I have incredibly dense breasts- always have. After years and years of mammos and ultrasounds- had my first at 20 years old and my first aspiration at 15- it was suggested to me to have a breast reduction. Not that they would find anything but simply removing some of the tissue would allow them to have "less to look through". That surgery was 10 years ago- at age 39. I have followed up faithfully every year since then. Still tons of cysts and procedures every year. FINALLY, last November it was suggested I have an MRI and my cancer was found. I have been told it has probably been there for years and never seen. If only the MRI for my dense breast tissue had been ordered years ago. Who knows if my situation would be different today. ~Nancy
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Calling Otter!
We still haven't figured out the real risk assessment here: if women are 1 in 8 chance over a lifetime to get breast cancer, then if they 4 - 6 times more likely if they have dense breasts, doesn't that mean they have a nearly 100% chance in their lifetime? I think Dr. Love is suggesting otherwise, but there may be more recent studies.
From Dr. Love's site and the article from the study in Canada http://www.dslrf.org/breastcancer/content.asp?CATID=0&L2=1&L3=4&L4=0&PID=&sid=130&cid=1159:
"However, you should not make the mistake in thinking that if you have dense breasts your risk is nearly five times greater than that of the average woman. That is not what this study tells us. As Boyd explained in an interview with a Canadian reporter, the average 50-year-old woman has a 2.5 percent risk of developing breast cancer over 10 years. If she has extensive breast density, he says, the risk doubles to five percent."
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MHP70 and all,
When it's stated that a particular condition makes it "X times" more likely to get BC, or that it increases breast cancer risk by "X times", this is not a measurement against average risk, but instead is a measurement against base risk.
It's true that 1 in 8 women will get BC. This means that the average woman has a 12.5% chance of getting breast cancer. This is average risk; it's an average because this figure includes all women, whether they are low risk or high risk. So it's a blend of everyone, with all their different risks factors.
Base risk is very different. Base risk is the risk level that every women faces before any individual risk factors are added in. It's hard to find a specific number for base risk, but from what I've read, it appears that base risk falls in the range of 4% to 5%. So if extreme breast density increases BC risk by 6 times, this means that women with very dense breast tissue may have a BC risk that's in the range of 24% - 30%. At the lower end, this happens to be just about double the average woman's BC risk of 12.5%. So what Dr. Love said when she talked about an "average 50-year old woman" having double the risk if she has extremely dense breasts is completely consistent with the 6X risk factor.
But.... something to keep in mind. First is that breast density is divided into 6 levels, and as otter said, the "6 times risk factor" for dense breasts is a measurement of the risk level for those with the highest level of breast density (75% or greater density, level 6) as compared to those with the lowest level of density (0% density, level 1). While many women are told that they have "dense breasts", only about 20% fall into the highest density category. So for the rest, while some degree of breast density will increase BC risk, the increase will not be nearly so great. This isn't to say that breast density isn't an extremely important factor to consider when assessing BC risk - it is! - but merely to point out that for most women, the risk increase is less than 6x and their absolute risk might not be that much higher than the "average" (consider that a 3X increase in risk merely puts you at an "average" risk level of approx. 12%).
One thing about breast density that's really interesting to me is that is appears that breast density may in many cases be an inherited. I know that my mother, in her 80s, still has very dense breasts. And my breasts have been identified as being "extremely dense", even though I am post-menopausal. So while I didn't inherit a genetic mutation that increased my risk of BC, it appears that I may have inherited my dense breasts, and that may have contributed to the development of my BC.
Some articles about breast density and BC risk:
- Women who have a breast density of 75 percent or higher on a mammogram have a risk of breast cancer that is four to five times greater than that of women with little or no density, making mammographic breast density one of the strongest biomarkers of breast cancer risk. http://www.aacr.org/home/public--media/aacr-press-releases.aspx?d=1830
- Women with dense tissue in 75% or more of the breast have arisk of breast cancer four to six times as great as the riskamong women with little or no dense tissue. http://content.nejm.org/cgi/content/full/356/3/227
- Findings of all 12 studies in which quantitative methods were used in assessing breast density showed a significant increase in breast cancer risk for women with the highest levels of breast density. Although the category definitions vary, the odds ratio for the most dense compared with the least dense categories ranges from 1.8 to 6.0, with most studies yielding an odds ratio of 4.0 or greater. http://radiology.rsna.org/content/230/1/29.full
And this explains the 6 categories of density: http://www.halls.md/breast/density.htm
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Thank you, Beesie!!!
otter
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Yes, thank you,Beesie! Thanks to that last link, I got some more information that led me to some further research on my report. I just took another gander at my mammogram report. The terms to determine your risk level may appear there. Mine said "heterogenously dense", which is in the 51 - 74% dense category. "Extremely dense" indicates 75% +.
No one ever mentioned this to me before, but heterogeneously dense breasts appear in more than 50% of women under 50. And that's me, so for the younger ladies out there, before you get too upset, just look at all the facts.
On another front: while it's a complete pain in the behind, get copies of all of your reports to have with you. They have been invaluable to me, I have learned so much from them, and feel much more able to communicate with my doctors.
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I was an old woman who was done with menopause. I had my mammo in March '04 plus a breast exam by my gyno. I have to admit I did not do SBEs. Anyway, I was scratching my breast and found this large lump. I decided to have it checked out here in my hometown. I go to Duke University Medical Center, and I wasn't going to drive over two hours for them to tell me I had a cyst. I've had those and have about three US's. I had mammos every year and felt wonderful leaving Duke knowing ALL WAS WELL. I knew I had dense breast, but no one told me it was a risk factor. The only risk factor I knew about having dense breasts was that it was hard to detect. But I still blindly put my faith in the mammos...I loved good news! I was 58 when it was found and it had gone to my lymph nodes and was 4.5 cm IDC. I had loads of chemo, rads, mastecomy and doing AI. In Oct. of last year I was dxd with mets to the spine.
Anyway, I had my primary examine my breast (embarrassing cuz he's never seen my fat body without something on) and he sent me for an MRI and US...wasn't hard to tell it was very, very concerning. Then my trip to Duke to see the surgeon and get a biopsy. Just in time for Christmas...LOL
This news should be CLEARLY told to women. I cannot imagine insurance companies, nor the government paying for MRIs.
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I have to say, I too have been getting mammos and US since I was 35. The problem for me was I have so much dense tissue that neither of them showed any problems. It wasn't till I felt a lump and INSISTED something was there then the tech searched around more with the US and found it. How I can feel it and they can't see it is scary. My BS showed me the films of both test and showed me how you couldn't see it at all on the mammo and could barely see it on the US. MY BS said if I wasn't so "persistent" it would have gone another year undetected. I actually never heard of the breast MRI until my BS finally ordered it. I guess the insurance companies just don't want to pay for it but I would have been happy to skip the mammo and US and head right to the MRI. I would have even paid for it myself!! I think the reality is we need to be more aware of our options and be our own advocate. If you have dense breast you should probably just see a BS once a year and get the MRI or at least every other year. Insurance should not dictate our health care.
My two cents.
Diane
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I'm now stage IV because of this INSANITY. NO ONE ever told me 5 years ago dense tissue was an issue. I trusted that the drs were reading my mammo's right. In fact, when I got dx, it even says on the readings "not positive of results due to extremely dense tissue". BUT, they still sent letters of all clear. Surgeon said they missed it for 3-5 years. I was dx at age 44, Stage 3c, Now, I'm stage IV.
It's a horrible reality to face becuz someone was CLUELESS about reading dense tissue mammo's. BTW, the radiolist reading my mammo was a HARVARD grad - so, sorry ladies, but degrees mean NOTHING, NOTHING to me. I have zero respect for her. zero. I now only care about my clinician's experience level and results. If you come from a mail in college, fine w/me if you have helped and can help me.
- Kim
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I've been tired today. I saw my PS today for follow up on a breast reconstruction - reconstruction surgery I had last week. All is well except I am bruised all over.
Why is it that creating change is so hard. It's so frustrating when something as simple as educating people about increased risk associated with breast density and informing women of their breast density should be easy but sometimes seems so hard.
Beesi -- the info you provided is great. Thanks for 'shoring-up' the numbers. Does that mean having a first degree relative (which increases BC risk by 2 X) therefore translates to an 'absolute risk' of 8% - 10% using the 'base rate' numbers, which is still below the average risk level of 12.5%?!? Wow! Who knew! Thankfully women (and their health care teams) are educated about this risk factor and they know if they have a first degree relative with BC.
I think the point remains...we need to educate and inform. People need to know that after age the most influential risk factor in developing BC is breast density and women need to be informed about their breast density -- they need to know their score. Sadly, because this is not common knowledge ... many of these women are not diagnosed until the disease has progressed to later stages. Through educating and informing women, and health care teams, I think this can be changed.
Anyway...I thought of some slogans while driving to see my PS!
Are you a 4? Know Your Score! Density, BC, and Screening Options
Or as a take off on Dr. Nancy Cappello's campaign - Are You Dense? I thought the NH contingent could be -- Who's Extremely Dense? (I know I was Extremely Dense (until my mastectomy) but at least it was just my breasts...
) Sometimes you just have to get snarky and laugh,..or go to bed. Goodnight all...you all inspire me. If you have time check out http://www.AreYouDense.org Does any one know the percent of women in the 4th quartile - Very Dense group? Just wondering how many people are we talking about???
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