My Story Matters

6 1/2 years ago I was diagnosed with stage 4 breast cancer two months after an all clear mammogram and ultrasound. My cancer was not visible due to my breast density. It was the absolute shock of my life.

I had no idea that breast cancer was growing throughout my entire skeletal system. Given the grave statistics women diagnosed with Stage 4 breast cancer face, I am thrilled (and a bit surprised) to be here today to tell the tale. Unfortunately, most women with the same diagnosis are not as lucky as I am. Our 5 year survival rate is about 30%.

I am beyond frustrated that the ‘system’ allows so many breast cancers to be found at later stages due to breast density, causing hardship and even death to so many. This has always been the case; breast density is not a new problem, yet so little has actually been done about it.

I am dedicating the rest of my life to making it better for the women coming after me – our daughters, friends, family, and co-workers. We can do better, but we simply aren’t doing all we can.

I wish the system would change for the better on our behalf because it is simply the right thing to do, but I honestly don’t think it will. Therefore, it is up to us to ‘make it happen’. If we have to, then we will. Game on.

That’s why I formed My Density Matters, so more women can find their breast cancer earlier, while still curable – so my story doesn’t become their story.

~ Leslie Yerger

My Story Matters

Everyone remembers where he/she/they were when the news came. Much of my dismay centered on the fact that I had to wait five long, anguishing days after the punishing biopsy for the phone call.

It came. “Well, it’s cancer”, my doctor said, delivering the news with all the bravado of a lead balloon. Her level tone droned on as my mind spun into panic mode tinged with an out-of-body flight to somewhere in the stratosphere.

After that, I did not hear the rest of her words. I just sat there, stunned. Spiraling inside while fighting every second, to keep my composure.

(“The Beautiful Warrior’s Manifesto—Navigating the Path to Survival”, Warrior Wisdom Essays, Substack, 2024).

Shock and confusion overwhelmed me. After all, I had been meticulous with my health and submitted to my annual mammograms without fail since I was forty. I had never missed one. And then, as I was about to approach my 57th birthday, I was preparing for surgery and the most arduous ordeal of my life.

The surgery confirmed the diagnosis four months later, resulting in the loss of my left breast and twenty-two lymph nodes. The 3 cm tumor extracted told a chilling reality—my cancer had been growing for at least 4-5 years.

It was stage III (ER+, PR+, HER2-, Grade 2) invasive ductal breast cancer. Follow up treatment included a grueling year and a half of chemotherapy and radiation.
It did not take long for me to question how could this have happened? My mind reeled with replayed scenarios of at least two “call backs” five and three years earlier for a suspicious abnormality of my left breast, only to be assuaged with more mammogram imaging after which being given the all-clear to resume my life.

I had been aware of my dense breast tissue from my early thirties and believed that my former and current OBGYN had all matters covered when treating me.

But instead, my doctor prescribed HRT for my premenopausal symptoms that I had been taking for three years. I had believed whole-heartedly that she had my best interests in mind when she examined me each year (including a manual breast exam) and sent me on my way without so much as a word or discussion about my unique risk factors.

With the most severe consequences, she neglected to mention the importance of or voice concern about the disease of my dense breast tissue. Not only did she fail to mention the availability of alternate modalities, but she also neglected to highlight their necessity in ensuring the certainty of assessing my breast health in a way that was as thorough as possible.

She failed me. And she continues to fail every woman under her care and practice.

This gross misdiagnosis is all too common. It is one, however, that could be reduced with education, resources, and legislation that will advocate for women who, like me, put their trust in the wrong hands, instead of our own.

Women can reduce this tragedy by telling their stories and rallying others to see the need for more transparency and informed discussions that can enact change.

Self-advocacy is the surest way to remain diligent in the face of this fast-growing disease that takes one in eight of our own. Our mothers and sisters; our daughters and our friends. Over half of women today have dense breast tissue—half.

The apathy and greed of a rapacious medical system that is all too happy to fix you when you break, is only met and fueled by this reality.

And this perhaps is the worst tragedy of all.

~ Jamie Collins

My Story Matters

I found a lump, actually several, while shoveling snow on a winter morning in February 2019. I immediately called my primary doctor and scheduled an appointment. She, too, felt the lumps and ordered a mammogram. I had a mammogram and ultrasound just days later. The conclusion after taking additional images of suspicious areas was DENSE BREAST TISSUE.

The lumps grew over the next 2.5 years, and my breasts became more uncomfortable and painful. I stood in front of my mirror, examining my breasts countless times with the breast cancer symptoms checklist pulled up on my phone. I didn’t have discharge coming from my nipples or indentations. “It must just be DENSE BREAST TISSUE.” I thought

This past November, I asked my primary to do another breast exam during a routine physical. She did and concluded that it was just DENSE BREAST TISSUE. I sighed heavily at her response, knowing that she was wrong. She agreed to order another mammogram to put my mind at ease.

Six weeks later, I had the mammogram and ultrasound that was supposed to put my mind at ease, only I was right. I had been right all along. I had breast cancer. I was biopsied on site that very day.

I have Stage III, triple-positive breast cancer (HER2, Estrogen, and Progesterone). I finished six rounds of harsh chemotherapy on April 26th. I had a bilateral mastectomy with complete left axillary dissection yesterday, May 19th. I will have to wait on the results of the pathology to come back, but at minimum, I will need one year of HER2 targeted chemo, radiation, and hormone therapy.

I have no family history of breast cancer or any cancer, have led a healthy lifestyle, and breastfed my children for 3.5 years. As you know, cancer can happen to anyone.

Advocacy
This issue of DENSE BREAST TISSUE is complex for several reasons. 1. If you have DENSE BREAST TISSUE, mammograms and ultrasounds are NOT as effective in detecting cancer in the early stages. DENSE BREAST TISSUE and cancer look the same on mammograms and ultrasounds. 2. If you have DENSE BREAST TISSUE, you are 2-4X more likely to develop breast cancer.

I have a medical journalist who has been helping me with research around dense breast tissue and cancer. To summarize the findings and best practices would be:

If you have DENSE BREAST TISSUE and YOU detect a change in your breast(s), you need to have a BREAST MRI and/or tomosynthesis. If the results are clear, follow-up needs to occur every six months.

If I had follow-up six months after my initial mammogram in February 2019 with a BREAST MRI, the cancer would have been detected earlier, and I likely would have had less invasive treatments and shorter in duration.

If I had listened to my primary doctor and continued to let the diagnosis of DENSE BREAST TISSUE stand, this likely would have been a death sentence as several lymph nodes had cancer in them, and it was only a matter of time before it set up shop somewhere else in my body.

~ Ashley Inda

Letter Text (supporting The Find It Early Act)

—– sample text for the body of your message —–

I am writing today as your constituent to urge you to co-sponsor the re-introduced Find It Early Act (H.R.3086), a bipartisan piece of legislation that would ensure all health insurance plans cover screening and diagnostic mammograms and additional screening for women with dense breasts and other high risk factors, with no cost-sharing.

Early detection is key to the effective treatment of breast cancer – 99 percent of women who receive an early diagnosis survive it. Unfortunately, women often have to pay high out-of-pocket costs for additional screenings due to risk factors such as breast density or family history. Many women have a heightened risk of breast cancer but cannot afford the cost of screening and will choose to delay or forgo these crucial tests. This decision often leads to later stage diagnoses when breast cancer is less treatable or possibly incurable, and therefore terminal. The bipartisan Find It Early Act would eliminate this ‘hidden cost’ of breast cancer diagnosis by requiring private and government insurers to cover the out-of-pocket costs often faced by women who require additional screenings to diagnose their cancer. This policy change would increase the early detection of breast cancer, thereby saving countless lives, and saving exorbitant costs of later stage cancer care.

I urge you to co-sponsor this important piece of legislation that will help more women access essential, and potentially life-saving, screenings services for breast cancer. Thank you sincerely for taking action to represent the interests of your constituents and for playing an integral part in saving countless lives.

The Find It Early Act

The denser your breasts, the higher your risk of developing breast cancer¹, AND the less likely mammography alone will detect it². Additional screening is needed for those women at higher risk due to breast density, yet additional screening is often not covered by insurance, leaving millions of women at risk for later stage diagnosis and poorer outcomes.

The Find It Early Act was introduced in December of 2022 by Congresswoman Rosa DeLauro (CT) and Congressman Brian Kirkpatrick (PA) . This bill calls for insurance coverage for mammograms and diagnostic mammograms as well as additional screening for women with dense breasts and other risk factors, with no cost sharing.

The passage of this bill would be a gamechanger for women with dense breasts and otherwise higher risk women by allowing for earlier diagnosis, less life-altering treatments, and lives saved.

Originally introduced in December of 2022, this Act must now be reintroduced into the current 118th Congress; this reintroduction is expected in mid-March of 2023.

Follow our social media channels (LinkedIn, Facebook, Instagram, Twitter) or sign up for our mailing list for updates on reintroduction and for more information on how YOU can help get this bill passed.

References:

Boyd NF, Guo H, Martin LJ, et al. Mammographic density and the risk and detection of breast cancer. NEngl J Med. 356(3):227-36, 2007
Wendie A. Berg, MD, PhD, Elizabeth A. Rafferty, MD, Sarah M. Friedewald, MD, Carrie B. Hruska, PhD, Habib Rahbar, MD. Screening Algorithms in Dense Breasts: AJR Expert Panel Narrative Review. American Journal of Roentgenology. 2021;216: 275-294. 10.2214/AJR.20.24436

Share Your "WHY"

Do you want to be present for your child’s graduation? Do you want to stay healthy enough to run a half marathon next year? Do you want to keep enjoying gardening in the sunshine?

Whatever it is, share your own personal WHY – your reason it’s important to find out your breast density and take charge of your own health via our social media challenge. Let’s have some fun and get creative!

It’s as simple as 1 – 2 – 3. Post, Tag, and Use #densitytime

#1 – POST a photo of yourself doing something you love with a few descriptive words. No love or joy is too big or too small – it all matters. Examples:
• I’m finding out my breast density because I want to watch my baby grow up.
• It’s time to find out my breast density because I want to keep watching amazing sunrises each morning.
• My breast density matters because I love ____.

#2 – TAG your friends/family and @mydensitymatters and encourage them to share their own WHY to keep the message of purpose going.

#3 – USE HASHTAG #densitytime in your post to be entered to win a $100 EVEREVE or Amazon gift card! Prizes will be awarded on March 1, 2023. Check your favorite My Density Matters social media channel on March 1, 2023 to find out who won!

We look forward to seeing you on social media sharing your WHY.

Coming Soon!

West Advantage Human Resources

Carmen West is a Senior Global Human Capital & Change Transformation Professional.

Leading and consulting with over 25 years of progressive human resources experience expanding diverse functions within human capital management, change management & cultural transformation, project management, and building high-performing teams. A servant leader who thrives on helping people of all backgrounds, business, and professional levels be the best they can be — to choose to be GREAT!

The owner and executive director of West Advantage HR Solutions, LLC; newly created to embody a servant leadership focus around People, Processes, & Technology, and providing leadership & coaching to support and partner within organizations and individuals so they accomplish greatness as the “Future of Work” is changing and transformation is underway.

In her career she has worked for various fortune 200-500 companies leading and executing large scale HR transformational initiatives and projects as well as infrastructure & process design, execution, and system integrations. Regarded as a knowledgeable business leader partnering with senior leaders and a respected leader who has the courage to raise the tough questions.

Her Why? That same courage & resilience was put to the test battling Breast Cancer alongside her Mom as the main caregiver and a year later with her own diagnosis of Breast Cancer after her Mom’s. Her Mom passed away a year after Carmen was giving the all clean-A Survivor. However, not satisfied with doing nothing, Carmen marched in “Making Strides” with American Cancer Association for herself and others, but mostly in honor of her Mother. Still that was not enough! After being connected with “My Density Matters” she has found her purpose in giving hope and valuable information to women like herself who have dense breast—there’s power in knowing your density & the various methods of testing. As the #1 advocate for your life you can fight proactively and WIN the War on Cancer. To be a SURVIOR, you must be a WARRIOR.

CyberSizzle Media

Kim Penny is the Founder & Director of CyberSizzle Media.

CyberSizzle Media provides website development, technical support, and marketing services to small and medium-sized businesses.

Connect IV Legal Services

Abigail Johnston is the Founder of Connect IV Legal Services.

Connect IV Legal Services, Inc. exists to connect patients with Metastatic Breast Cancer (MBC) with lawyers who will provide free (pro bono) legal services. The mission is to address the financial toxicity caused by terminal or for life cancer treatment by providing legal resources. As a lawyer living with MBC, I stay involved in each “case” to ensure that all needs are met and to translate between the patients and the doctors.

Learn more at: https://nohalfmeasures.blog/2019/03/04/connect-iv-legal-services-inc/

Hot Flashes & Cool Topics Podcast

Colleen Rosenblum & Bridgett Garratt are co-hosts of Hot Flashes & Cool Topics podcast.

Hot Flashes & Cool Topics is a free weekly podcast for women in midlife and beyond. The all inclusive podcast talks about everything including relationships to careers, health and wellness to celebrity guests and ageism. Please subscribe on any podcast platform and find us on all forms of social media.

Apple Podcast: https://podcasts.apple.com/us/podcast/hot-flashes-cool-topics/id1481021446

Website: http://hotflashescooltopics.com/

Hot Flashes & Cool Topics

Hélène T. Stelian Coaching

Hélène Tragos Stelian is a Certified Life Coach, Speaker, and Community Builder.

As a Midlife Empowerment Coach, she helps women who are struggling in their 40s and beyond—who wonder if their best years are behind them and what’s next for them. She shows them how to put themselves first, reclaim their identity, figure out what’s next, and feel excited about their future. She coaches women primarily through her signature 6-week Discover Your Purpose group program. She also speaks on many topics, including purpose, the empty nest, perfectionism, procrastination, legacy, and goal setting.

Hélène is passionate about connecting women to each other as well as to educational and inspirational content. She has built an active community through her Facebook group, Empowering Women in Midlife, where women support and encourage each other—and share a laugh or two! She also shares educational and inspirational content through her interviews, both on her blogs and in her Facebook lives (on her page and in her group).

Hélène splits her time between Chicago, Illinois and Sarasota, Florida, has been married to Peter for 25 years, and has twin girls in their twenties. She loves dancing, crime shows, orchids—and eats chocolate every day!

KMG Coaching

Karla Mans Giroux – KMG Holistic Cancer Coaching
Health Coach, Lifestyle Consultant, Keynote Speaker and
Radical Remission Coach & Workshop Facilitator

Karla Mans Giroux is a long-time user of natural, holistic healing. When faced with a cancer challenge, she sought natural holistic solutions as well as conventional care. Karla knows just how hard change can be. She also knows how important it can be, and never more important than when faced with a serious illness. She is certified as a Wisdom of the Whole Health Coach and Radical Remission Coach & Workshop Facilitator and is thrilled to be able to offer coaching and workshops to those on a cancer journey, as well as those seeking prevention. Karla is also a natural and dynamic keynote speaker and is available to share her message of hope and inspiration. Karla calls herself a cancer thriver and is passionate about empowering others to successfully do the same.

Contact Karla @ 847-902-0659
Karla@KMGCoach.com | www.KMGCoach.com
https://www.facebook.com/KarlaMansGirouxKMGCoach/

Pieces of I, LLC

Susan LePlae Miller

Susan is a cross-functional partnerships manager with a proven track record of building teams and engaging people, processes, and technology to develop strategic initiatives.

She created Pieces of I, LLC to empower “Passion Projects”. Currently working on two core initiatives: a breast cancer screening awareness (My Density Matters – helping women to advocate for their breast health), and #Teach1 (a pay it forward methodology to help small businesses and the at-risk population).

Her core value pillars of respect, compassion, authenticity, empowerment, kindness, and connection weave throughout her stories, and her mantra is: “Know your value, live your values”.

SurvivingBreastCancer.org

SurvivingBreastCancer.org is a virtual breast cancer patient & community platform empowering those diagnosed with breast cancer and their loved ones from day one and beyond through educational content (blogs, podcasts, newsletters, and webinars etc.), community and support resources.

We understand that a breast cancer diagnosis doesn’t just impact the individual, but everyone around them. We provide an inclusive and collaborative space to holistically support our community members. Through stories, our voices and our lived experiences, we empower one another because we know we are stronger together.

What is it like to get an MBI?

Your Molecular Breast Imaging appointment has 2 parts — the injection and the scan.
You likely will first be asked to change into a gown, like you do for a usual mammogram.
You then receive a small injection that enables the scan to “light up” the tissue in your breast.
The nurse will have you wait for a short while, allowing the injected material to move through your body.
When time for your scan, the room and machine are similar to a mammogram, except MUCH better!!
For two breasts, the scanning can take about 40 minutes, but you are given a SEAT! That’s right — you get to sit for this scan!
The radiologist will position you to be most comfortable; you have to do your best to be “still.” Many rooms have a TV to help pass the time.

What is a CESM like?

Description coming soon…

What is a Handheld Ultrasound like?

You will be asked to change into a gown / smock top in a private dressing area.
You lie on your back on an examination table.
The technician may ask you to shift slightly to the right or left; you can ask for pillows (or rolled towels) to help stabilize the position or make you more comfortable.
Your breast will be exposed and a gel will be applied from a squirt bottle. NOTE: Some technicians warm the gel; others do not.
The technician will sit or stand next to the table and watch a monitor as they move a handheld scanner over your breast, through the gel.
If you have ever had a baby, it’s very similar to that type of external ultrasound! Your breast, though, might be a lot more sensitive than your pregnant tummy. Depending on your sensitivity, the manual scanning can be quite uncomfortable. Try to breathe and know it does not last that long. If you need them to pause so you can take a break, just ask.
Afterwards, they will give you towels to wipe off the gel and you’re good to go!

What is Tamoxifen?

Tamoxifen is used to treat breast cancer. It is also used to reduce the chances of breast cancer in high-risk patients.

What is it like to get an MRI?

You will be asked to change into a gown / smock top in a private dressing area.
You lie forward on a special examination table that is molded to accommodate a woman’s body.
NOTE: Your forehead and breastbone will rest against pads. Depending on the shape of your body, the breastbone pad can be quite uncomfortable. Try to breathe and ignore.
The technician may ask you to shift slightly; you can ask for pillows (or rolled towels) to help stabilize the position or make you more comfortable.
Once positioned, the table you are on will slide backwards into the MRI chamber.
A series of loud clicking noises will start, taking the MRI images.
NOTE: Many MRI labs have headphones, offering fun music to keep your mind off the loud clicking.
If you are very anxious or tend to be claustrophobic, you can ask your physician for an anti-anxiety pill to take prior to your appointment.
When complete, the table slides back out and the technician will help you off the table.

What is a 3D Mammogram like?

In a private dressing area, you are asked to change into a smock top, removing all your clothes from the waist up.
You walk to a scanning room and the technician will instruct you to slip the smock top off one arm.
The technician will position you up tight, next to the machine, with your breast laying on the platform “table.” They are able to adjust the height of the table for your exact height.
Using a foot control and then fine-adjustment knob, the technician will lower the upper platform down on the top of your breast, pressing it hard. For some women, this is no big deal; for others, this can be very uncomfortable/painful. Try to focus on breathing — and know it will only be a few seconds.
The technician will return to their computer station, behind a protective glass, and ask you to relax and hold perfectly still.
The image is taken in a second and technician returns to position you for the next angle.
Process is repeated for the other side.
That’s all there is to it!

What is it like to get a Mammogram?

In a private dressing area, you are asked to change into a smock top, removing all your clothes from the waist up.
You walk to a scanning room and the technician will instruct you to slip the smock top off one arm.
The technician will position you up tight, next to the machine, with your breast laying on the platform “table.” They are able to adjust the height of the table for your exact height.
Using a foot control and then fine-adjustment knob, the technician will lower the upper platform down on the top of your breast, pressing it hard. For some women, this is no big deal; for others, this can be very uncomfortable/painful. Try to focus on breathing — and know it will only be a few seconds.
The technician will return to their computer station, behind a protective glass, and ask you to relax and hold perfectly still.
The image is taken in a second and technician returns to position you for the next angle.
Process is repeated for the other side.
That’s all there is to it!