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YOU Are Your Own Best Advocate #BreastCancer

Thousands of mammograms are performed annually in an attempt to detect breast cancer in women, and in the earliest stage possible. We believe we are being cautious by faithfully scheduling our annual mammograms and taking care of our health. What we don’t know is that 40% of women have dense breast tissue, which makes detecting a tumor with a traditional mammogram only 30% effective.

As a result, many women do not discover they have a cancerous tumor until it’s in stage 3 or 4, especially if she is a women with no risk factors (no family history of breast cancer, breast fed their children, etc) and unaware that mammograms have a high fail rate in women with dense breast tissue.

40% of women have dense breast tissue and aren’t aware of it, or the limitations of traditional mammograms in detecting cancerous tumors in dense breast tissue

nancy cabbello

Through the efforts of advocates such Dr. Carol Cappello, Karen Honrychs, and Dr. Lydia Liao, there is now legislation in many states requiring that women with dense breast tissue are informed. Unfortunately, many who receive this information are not made to understand that having dense breast tissue means that their traditional mammogram is not very effective in giving the radiologist all the information she needs to detect possible cancer. Over 90% of these women are also not being made aware of their other options.

Contrast Enhanced Spectral Mammography

GE developed Contrast Enhanced Spectral Mammography, which uses contrast dye to allows a radiologist to see the internal workings of each breast, unhindered by dense breast tissue. With CESM doctors can provide answers the same day as your screening, often while you’re still in the office. More amazingly, because a CESM provides us with information about the blood flow of each breast, it can show whether a specific area is getting an unusually increased blood flow- often an indicator that a tumor is in pre-development. A CESM can discover cancer at its most treatable and benign stage.

When I was 28, I was told I had dense breast tissue so my mammogram was not particularly readable. I was told if I ever felt anything, I should have the area checked with a sonogram. The problem? What if I didn’t feel anything? Often tumors are only palpable when they are larger or near the surface of the breast, and by that time it could be too late. I specifically asked to have a screening sonogram just in case I was missing something, and was told point blank they would not do that, and would only check an area where I specifically felt something.

CESM was not available yet, and neither was the option of an automated whole breast ultrasound, which is less dependent on the skill of the technician and human error, and can screen for structures I can’t find myself.

These are available now.

When you have a mammogram, ask for a copy of the radiologist’s report

If your doctor tells you that you don’t need it, insist. It’s yours, you have a right to have it. If you have dense breast tissue, it will let you know, as well as what level you are (some tissue is so dense that the mammogram practically looks like a white sheet- nothing can be seen).

If you have dense breast tissue, ask for a CESM. Even if the legislature in your state requires that you are told you have dense breast tissue, doctors and medical personnel are not required to counsel you on this or inform you that you have more options to detect breast cancer when a traditional mammogram is insufficient. CESM is often covered, and if it’s not, it’s the price of a mammogram + contrast dye, and may save your life. A CESM is also more capable of guiding a technician to accurately taking a biopsy of anything questionable in the breast- no guesswork or approximation.

The truth is, when it comes to your health, YOU are your own best advocate. You know when something is wrong, and you may have to fight to get all the facts and access to the best care. If you need to research on your own, or change doctors, do it. It may save your life. And please, please share this information about dense breast tissue with other women so we can save lives. This information is not out there, and many women learn to late!

For more information, visit AreYouDense.org

I attended the Working Mother 2013 Work Life Congress “Breast Cancer Risk Factors” Conference to learn about and share this important information.

ge working mother media event

  • I learned firsthand this year how important it is to get mammograms and breast ultrasounds! Thank goodness my lumps turned out to be cysts, but it was a very scary time!!

  • Donna

    Honestly, I need to be more proactive when it comes to my health. Thanks for the reminder!

  • I didn’t realize traditional mammograms could be ineffective. Thanks for sharing this info!

  • Mellisa

    Breast Cancer scares me! I have been hearing more and more of younger people, even some in their twenties and early thirties being diagnosed. It’s nothing to take lightly.

  • I’m so glad that awareness is being raised about this.

  • I guess this is one case where having “flabby boobs” is sort of a good thing.

  • Good info here! We had a guest speaker at our MOPS group bring in a kit to show us how to find lump and how to do a breast self-exam. I need to get in the habit!

  • This is really interesting to me because I am an ultrasound tech. At the breast clinic in my area, they do check the area where you feel the lump, but we also scan the rest of the breast too, just to make sure and take pictures. The nice thing about ultrasound is that you can see if something is cystic or solid. Cysts are never cancer and can feel like a lump. You can also see increased blood flow to a solid lump. I’m interested to see if CESM is going to be used more widely now.
    Oh and I’m totally a believer of screening mammograms. It’s really sad when you see someone that hasn’t gotten one for 10 years and the cancer is everywhere. The prognosis is so SO much better if you catch and treat it early. I agree that you are your own best advocate. Always fight for yourself!

  • Thank you so much for this information. My exam is on wed next week and it is my first so I’m a bit lost as how this is all suppose to go.

  • Mickey

    Wow, I had no idea I should do any of this. That’s kind of scary that it’s not common knowledge. Thank you for sharing.

  • Penelope

    After your mammogram, when you get the results, just remember to ask for the radiologist’s report (especially if they tell you that you have dense breast tissue- I’m not sure if they require disclosing this in your state so you can also ask if you have it if they don’t mention it).

  • Penelope

    Is it the automated whole breast ultrasound that you use for screening? I was sooo upset when I was told they don’t screen for this, but now that I know the AWB ultrasound is available, I plan to make an appointment specifically for that. I was told that a mammogram can’t tell me anything because of the density (frankly I’m impressed they were so honest about that because no one else I know ever hears anything, they just get a letter that nothing abnormal could be detected, but if you can’t see it that well, of course you can’t detect anything). And when I asked for a screening with the ultrasound since that CAN detect it, they said they don’t do this because the amount of time to screen everything is a waste so they only screen specifically the area you felt a lump (if you ever feel it).

    I actually started to cry and gather my things to leave the office, and told the doctor she was not providing me proper care, because there could easily be something I’m missing that is small or deep within the breast tissue, and she got nervous at how emotional I became, and did a quick screen of each breast, but she said that she did it only to reassure me and this would not be the norm in follow up visits.

    Just an FYI for everyone, a general mammogram is still important to start with because there are some cancers that it does still accurately detect (there are various forms of breast cancer unfortunately), but if you are told you have dense breast tissue it is NOT sufficient by itself as a screening tool.

  • It is so important. I’ve had two now (I’m only 33) due to two scares. I have to start them yearly at 35 because of my family history. I had no idea dense breast tissue couldn’t be detected on a regular, thanks for letting me know!

  • Yeah, special focus is put on the area where the lump is felt, but generally our breast clinic takes a look a the entire breast. I think if you request a certain service, your provider should oblige and it’s ridiculous that you are not. Where we live in a time that breast cancer is so prevalent, it’s nice to have some peace of mind.

  • I’ve been getting them for several years now. Very important.

  • Breast cancer definitely scares me– I really try to be on top of any changes.

  • Thank you so very much for the information, it’s greatly appreciated! I have an appointment in a dew months and will definitely keep this in mind!

  • I’m 31 and have never gotten a mammogram. Should I be getting them? I know a friend of mine started getting yearly mammograms in her late 20s, but that was because breast cancer ran in her family. My doc has never advised me to get one. Should I?

  • I go for regular mammograms but I’ve never asked for the report. I wonder if we can get them in Canada. I’m going to find out!

  • Penelope

    Right now they still suggest the 35-40 range for the baseline mammogram if you have no risk factors and do not feel anything, but considering how many women find out they have breast cancer at 28, or younger, I am hoping they consider changing that. I went for my first at 28 and it was unsuccessful (as I posted above 🙂 ) but now that, in the last year, they have two more options that are more accurate, I plan to go again. The automated whole breast ultrasound is right up my alley (no radiation that I’m aware of).

  • I think this is great. I agree sometimes it doesn’t get caught till way late. I make sure to exam myself and checkups regularly. Once I get old enough I will start doing the mamogram.

  • I love the website name! I really do need to get checked, I have yet to have my first mammogram.

  • Breast cancer is so scary! I lost an aunt due to breast cancer. 🙁

  • Because it is so wide spread this is such a scary thing to think about. This is a good reminder that I need to book my appointment.

  • Thanks so much for sharing this info. I had no idea! I need to be more health conscious.

  • Well I see my dr for my annual checkup in Dec. I’ll definitely ask him about getting a mammogram. Thanks for the info. I’m glad you shared this information.

  • I have no idea if I have dense breast tissue- I am definitely asking next time I go in.

  • I had no idea! Thanks for sharing this. I do know that I’ll also check out Breast Thermography as well as ask for the CESM test.

  • Jennifer

    I had a mammogram earlier this year followed by a breast ultrasound. I MUCH preferred the ultra sound and being able to see everyting right there!

  • Oh gosh this is so scary – never heard of this! I’m dreading a mammogram in general. It’s so true we are our own advocate. I’ve learned that too many times.

  • They told me that the less body fat you have, the denser the breast tissue. Fat is easier to see through! Weird, huh?

  • Penelope

    Agree, I totally prefer an ultrasound

  • I had absolutely no idea that mammograms are not always effective in detection! I am going to share this information with my mom and make get take even further precautions.

  • It’s so true that we have to fight for ourselves! Sometimes doctors don’t know it all.

  • Cancer is such a monster and it’s scary to think about how quickly a tumor can change your life. I try and do self-exams regularly, but I really need to go in for a mammogram and ask about the CESM test because I know I have dense tissue.

  • This is so important for women to know about.

  • I haven’t had a mammogram in a VERY long time. I’m going to see about having one after I stop breast feeding.