Ask, Learn, Insist, & Persist Stories

diciembre 9 2021

My Density Matters: An MPH Student’s Perspective

Michelle Schroeder Ask, Learn, Insist, & Persist Stories, Breast Cancer

My Density Matters: An MPH Student’s Perspective December 9, 2021

By Michelle Schroeder
Masters of Public Health Student, University of California, Berkeley School of Public Health

Leslie, Susan, and Gina have taught me so much about, first and foremost, breast density as a risk factor for breast cancer, but they have also taught me how to remain driven and unwavering in support for their cause and their people. And the message of Mi densidad importa deserves the spotlight.

I came to this organization with a background in preventive cancer screening, yet I, too, was operating under the misconception that mammograms are effective in detecting breast cancer in all women. It is time to shed light on the shortcomings of breast cancer screening standards of care and to empower women to understand their breast density status and how that affects their screening options.

The My Density Matters and Healthy Washington Heights team is a perfect example of what organized efforts to achieve a mission should look like. Tireless, open, knowledgeable, and, most importantly, so certain of their purpose in this space.

With that, I can’t wait to see what the My Density Matters efforts will achieve and where this experience will lead me!

octubre 1 2021

Do You Know How to Find Out Your Breast Density?

Leslie Ferris Yerger Ask, Learn, Insist, & Persist Stories, Breast Cancer

Do You Know How to Find Out Your Breast Density? Oct 1, 2021

Why your density matters: For women with dense breasts, mammography alone is not enough. Mammography alone will find less than half of all breast cancers in women with dense breasts, AND it also increases the risk of developing breast cancer. The denser the breast, the higher the risk.

To learn how to find out your breast density, please join us for a twitter chat where Dra. Kirti Kulkarni, M.D. (@kirti_chicago), Breast Radiologist, Associate Professor of Radiology and Vice Chair for Communications, University of Chicago will discuss how to find out your breast density.

Who: Hosted by Mi densidad importa and sponsored by Volpara Health.

What: This twitter event will empower you to take charge of your breast health.

When: Wednesday, October 27, 2021

6:00pm EDT, 5:00pm CDT, 4:00pm MDT, and 3:00pm PDT.

Where: Twitter – Follow @mydensitymatter and always use the hashtag #BreastDensityChat

How:

Type #BreastDensityChat into the search bar
Choose “Latest” from the menu across the top
You will see the tweets and conversation happening in the chat
Like, comment and retweet
ALWAYS use the hashtag #BreastDensityChat when writing a post or response – otherwise it will not show up in the chat. It helps to keep the hashtag in your clipboard.
After the event, you can search the hashtag and continue to engage on the content.

Follow My Density Matters: Facebook, Instagram, Twitter, and LinkedIn.

Follow Volpara Health: Facebook, Instagram, Twitter, and LinkedIn.

Follow Dr. Kirti Kulkarni: Instagram, Twitter, and LinkedIn.

Want to keep up with what is happening at My Density Matters? Sign up for our mailing list.

Help us achieve our vision: A world where breast density no longer hinders the early detection of breast cancer. Donate today.

julio 14 2021

Non-Profit Organization Launched to Share Widely Unknown Cancer Risk

Leslie Ferris Yerger Ask, Learn, Insist, & Persist Stories, Breast Cancer

Non-Profit Organization Launched to Share Widely Unknown Cancer Risk July 14, 2021

Most women do not know their breast density and are unaware that breast density increases their breast cancer risk. Mammography will miss over 50% of cancers in dense breasts, leaving their cancers to grow and possibly spread. For women with dense breast tissue, screening mammography (including 3D) is not enough leaving millions of women at risk of cancer.

After a yearlong initiative empowering women to find out their breast density and get essential additional supplemental screenings, Founder Leslie Ferris Yerger will launch My Density Matters as a non-profit organization. “For decades, the medical industry has known that breast density masks cancers in women with dense breasts, leaving millions of women at risk. Yet very little real progress has been made; I’ve launched this organization to change that!” says Yerger.

Through social media, webinars, lectures, educational tools and resources, corporate health and wellness programs, and partnerships, the new organization aims to inspire action and compel women with dense breasts to get essential additional screening. “It’s about saving lives through education and finding cancer earlier when the chances of survival are greatest .” shares Yerger.

The launch begins with a ribbon-cutting ceremony on July 20, 2021, at 4:00 pm at ANUYU Boutique in Lake Zurich, IL. Leslie Ferris Yerger shares that “We will take a few moments to recognize the people that we’ve collaborated with so far. We’ve received tremendous support, and we are grateful for it.”

Leslie has formed a leadership team along with volunteer social media ambassadors and hopes to raise $150,000 to support the awareness campaign Find Out My Breast Density Day 2022 and educate millions of women on this widely unknown cancer risk factor.

The organization aims to empower women to find out their breast density and speak with their doctors about additional screening. There is only one way to determine your breast density: get a mammogram and ask for the report. This crucial step is what most women are missing, and many doctors don’t share this information as a common practice. Once you understand if your density is an A, B, C, or D, you can take action and talk to your doctor about additional screening options that could include ultrasound, molecular breast imaging (MBI), contrast-enhanced mammography (CEM), and MRI. More women need to understand their additional screening options and get screened for this widely unknown breast cancer risk.

marzo 17 2021

It Was Never Really About the Tweets…

Leslie Ferris Yerger Ask, Learn, Insist, & Persist Stories, Breast Cancer

It Was Never Really About the Tweets… March 17, 2021

We recently hosted #FindOutMyBreastDensityDay on February 24, 2021, collaborating with 25 organizations to create a social media blitz. The goal was to empower women to find out their breast density, and IF they are dense to talk with their doctor about additional breast cancer screening.

By any measure, the event was a big success. There were 700,000+ tweet impressions and views across four social media platforms. The likes, shares, comments, and retweets mounted up quickly over the course of the day.

It was fun, exhilarating, and so worth the effort!

While it is tempting to get excited about all of those social media views, it is important to remember it was never really about the number of tweets, how pretty the posts were, or how many new followers we got. It was about saving lives. Cuanto earlier breast cancer is detected and treated, the higher the likelihood a woman will survive the disease.

Until we find the cure for breast cancer, early detection is the key to survival – and we can do better at early detection than our current standard of care offers women with dense breasts.

Empowering women with dense breasts to take charge of their own breast cancer screening is a must until what they need in addition to mammography becomes standard of care. We will keep doing what we do until every woman gets the breast cancer screening that is most likely to find her breast cancer – no matter how many tweets it takes!

Events like this are never done in isolation. Lisa Baer, Susan LePlae Miller of Pieces of I, LLC, Kim Penny of Cyber Sizzle Media, and all of our great partners made it what it was!

So grateful!
~ Leslie Ferris Yerger, Founder: MyDensityMatters.org

A few of the empowering comments from #FindOutMyBreastDensityDay:

‘Thanks for posting the chart on breast density. It applies to my wife, and ever since your first post I’ve been nudging her to make her (delayed) appointment for an annual check up. I lost my Aunt to BC. My mom was a 29-year survivor. Thanks for the nudge.’ – John H.

‘Just went to the OB/GYN this morning and have a prescription for a mammogram. I looked up my old mammogram reports, and they do say ‘dense breasts’. It is so scary. I always felt invincible, but not anymore. I will be talking to my doctor about what else is available to me’. – Sue L.

‘This is great! After just going through my first mammogram experience, I now understand how this can be informative and helpful to women!’. – Elizabeth P.

‘I knew I was dense, but never really understood what it meant!’. – Mary P.

‘Yikes! I am a category D – extremely dense breasts. I knew that before but had no idea that made me a higher risk.’ – Mary F.

febrero 10 2021

What If Emma Hadn’t Advocated For Herself?

Leslie Ferris Yerger Ask, Learn, Insist, & Persist Stories, Breast Cancer

What If Emma Hadn’t Advocated For Herself? Feb 10, 2021

Emma shares her story about insisting and persisting to get the tests she needed to find her two breast cancers earlier than they would have otherwise been found. What if she hadn’t advocated for herself?

Thank you Emma for showing us the way, showing us how to advocate for ourselves, and how to follow our gut when we know something isn’t quite right!

I am eagerly awaiting the availability of the molecular breast imaging (MBI) technology in a facility near me. Mammography failed to detect my breast cancers. So far, I have survived breast cancer twice.

Because I have dense breasts, I started annual mammography in my late 30’s. I was hoping that if there were any tumors growing, they would surely be detected. The report was always negative, but showed dense, scattered glandular and fibrous tissue, with scattered calcifications, but benign.

Just as I was coming up to my 50^th birthday, I went in for my annual mammogram. This time there was a suspicious looking small mass in my right breast. An ultrasound was ordered and my doctor advised a biopsy as the ultrasound was not conclusive. The biopsy showed invasive cancer and within two weeks I had a lumpectomy, confirming a 2+ cm invasive, stage II, HR positive, HER2 negative tumor. My surgeon estimated that it had probably been growing for at least 2 years and had clearly gone undetected! I had to undergo seven, 5-day weeks of radiation and 6 months of chemotherapy. The radiation left a disfigured breast and scar tissue within the breast, making future mammograms difficult to read, as scar tissue and malignancy can have a similar appearance.

Eighteen years later, my annual mammogram showed a suspicious looking area in the breast that had been radiated. I again underwent an ultrasound. The radiologist said the exam was inconclusive and advised me to have another mammogram in 6 months. I asked her for an MRI instead. Her reply was: “They are very expensive.” I immediately contacted my oncologist and asked for a scrip for an MRI. Without delay, I had an MRI of both breasts. As it turned out, the suspicious area in the right, radiated breast was old scar tissue. However, there was a very small mass in the other breast that could not be classified definitively by MRI to rule out malignancy. My surgeon performed an MRI, needle guided biopsy and deposited a marking radioactive seed clip placed for a possible subsequent lumpectomy. The biopsy showed a very small (fortunately) invasive primary tumor in that breast, which was unrelated to the type of tumor found many years earlier, in the other, right breast, and also a DCIS. I had to have another lumpectomy. A lot of procedures!

I believe that my insistence on an MRI detected that new tumor at the earliest of stages and enabled me to have it eliminated. I have an upcoming mammogram next month and I plan on insisting on an MRI as well, until I can have MBI. I have had other physical problems that have required medical inquiry and attention ever since the “warranty” on my body ran out at 50. I have learned through my experience how important it is to be a strong advocate for one’s medical condition, or have someone to advocate for you, and to obtain as much information as you can. Enlist your doctors as partners in your care.

Emma K

enero 11 2021

I Didn’t Know I was So DENSE!

Leslie Ferris Yerger Ask, Learn, Insist, & Persist Stories, Breast Cancer

I Didn’t Know I was So DENSE! January 11, 2021

Welcome to the very first guest blog in our ‘Ask, Learn, Insist, and Persist’ series, where we get first hand the good, the bad, and the ugly of women with dense breasts trying to get the breast cancer screening they deserve.

Hélène T. Stelian, mid-life empowerment coach, shares with us her journey from finding out her breast density to getting screened with Molecular Breast Imaging (MBI) in Tampa Florida.

This blog is taken, with Hélène’s permission, from her newsletter of January 11, 2021. Enjoy, and please comment below.

I Didn’t Know I was So DENSE!

A few months ago, I attended a virtual talk by Leslie Ferris Yerger, who was diagnosed with stage 4 breast cancer at 55, two months after an all-clear mammogram and ultrasound. She later learned that those screening tools are very unlikely to detect cancer in women with dense breasts, like her. She’s since written a memoir and is on a mission to advocate for the next generation of breast cancer screening.

Leslie urges women to know their own breast density and, if they have dense breasts, to supplement their yearly mammogram and ultrasound with additional screening like Molecular Breast Imaging (MBI). (Learn about Leslie’s personal story here and watch my interview with Leslie here.)

Curious, I looked at my last mammogram report and lo and behold, found that I was in the 10% of women who fall into Type D “extremely dense” breasts. I’d just had an all-clear mammogram and ultrasound myself, and have no family history of breast cancer, but I had also learned that the denser the breast, the higher the likelihood of getting breast cancer (regardless of cancer detection issues). So I decided to be on the safe side and get an MBI.

Unfortunately, this type of screening is not readily available; that’s why part of Leslie’s mission is helping the Mayo Clinic, which developed the MBI, to educate physicians and encourage hospitals to get the technology. Lucky for me, Florida, where I spend winters, is a state with several MBI locations, one of which is only 75 minutes from our home in Sarasota.

In order to get the testing, I needed a doctor’s order and I was surprised that my OBGYN, one of the founders of a large and well-established medical practice associated with Northwestern Hospital in Chicago, had never heard of MBI and balked at prescribing the test. She finally relented after I sent her links to the research. Luckily, my insurance covered the $500 cost of the test and I was only out $50.

The MBI took about an hour from start to finish. I’d been required to fast for 4 hours and upon arrival my arm was painlessly injected with a low-dose radioactive tracer (which “lights up” the cancer cells). Then a special gamma camera captured images while each breast was positioned between plates in the MBI machine, much like a mammogram but not squeezing as hard. The biggest difference was that each image took 10 minutes, but I was seated and chatting with the technician or watching a home improvement show on a conveniently placed TV. I snuck some photos when I was alone to change!

Luckily, this story has a happy ending and my MBI results came back with no evidence of cancer. Still, I plan to talk to my OBGYN when I see her this spring in Chicago. I’ll tell her about my experience and I’ll urge her to learn about MBIs and consider them for other women in her practice with dense breasts.

YOUR TURN: Look at your last mammogram results and learn your breast density. If you have Type C (“heterogeneously dense”) or D (“extremely dense”) breasts, please learn about your options (check out resources here) and talk to your doctor. Don’t be afraid to be a squeaky wheel! As Leslie says, insist and persist!

Warmly,
Hélène

Learn more about Hélène’s programs for women in midlife.
Email: Helene@HeleneTStelian.com
Website: www.HeleneTStelian.com
Facebook: https://www.facebook.com/HeleneTStelianCoaching/
LinkedIn: https://www.linkedin.com/in/helene-tragos-stelian/
Twitter: https://twitter.com/HTStelian
Pinterest: https://www.pinterest.com/htstelian/
Youtube: https://www.youtube.com/channel/UCcroVazuGE2_Ij-dyaU_aIQ