My Story Matters

At age 37, I felt a lump in my breast––about the size of a large walnut. At that time in my life, I was not active in performing breast self-exams, but when I felt the lump, I immediately contacted my doctor. He recommended a mammogram. Over the next 12 months, with my persistence, I would have more mammograms and office visits. By the time the lump had grown to the size of a large lemon, I finally got a new doctor to pay attention—a biopsy followed along with a unilateral mastectomy.

It was a struggle (1992) to get access to my medical records, and it would take even longer to learn that it is more difficult to detect breast cancer in women who have dense breasts.

I’m lucky to be alive. I also know that three decades later it remains that greater efforts must be made to educate breast care centers, OBGYNs, general practitioners, and all women around the world about dense tissue.

~ Beverly Vote

My Story Matters

From my 40th birthday on, I got an annual mammogram, as recommended by the medical community at the time. Every year I was told that the mammogram was clear, and I was fine. One year I noticed that the test result indicated that I had dense breasts. I asked my OBGYN what that meant, and he told me that it was nothing to worry about. I shouldn’t have believed him.

While jogging on May 6, 2010, I noticed a sharp twinge of pain in my right breast every time my right foot hit the ground. Although I’d had a clear mammogram at the end of March, just five weeks earlier, I examined my breasts in the shower, and didn’t notice any lumps. After my shower I noticed that a dent appeared in my right breast when I raised my right arm to apply deodorant. I squeezed both breasts at the same time and noticed that my right breast felt harder than my left. I called my OBGYN right away.

I saw my OBGYN May 7 and he referred me to a breast cancer surgeon. I saw her the next business day, May 10, and she recommended an MRI. It was scheduled one week later. When I got to the hospital for the MRI, I learned that it had been canceled because my insurance company refused to authorize it. I walked down the hall to the breast surgeon’s office and was told that my doctor was working with the insurance company to get them to change their decision.

I had the MRI toward the end of May and saw my breast surgeon the next business day. The radiology department had not read the MRI, so the breast surgeon pulled up the film and looked at it herself. She excused herself to talk to the radiologist, leaving the MRI film visible on her computer while I waited for her to return. I have no medical training, but I could easily see that one breast appeared almost entirely white, and the other appeared almost entirely black. I knew something was wrong, but since I’d just had a clear mammogram, I wasn’t concerned about breast cancer.

When my breast surgeon returned to her office, she told me that it appeared I had breast cancer, but she couldn’t be certain without a biopsy. I got the biopsy results the next day, confirming that I had breast cancer. I assumed that it was caught early, since it didn’t appear in my mammogram.

At my next appointment I had a CT scan and learned that my breast cancer was not caught early. Instead of facing a finite set of treatments and a high likelihood of a cure, I had metastatic breast cancer and it was fatal.

The hardest thing I’ve ever done was to tell my daughters that I had metastatic breast cancer. They were crying, I was crying, and we were all terrified of the significance of my diagnosis. My oldest daughter had just gotten engaged, and suddenly I was unsure whether I would be alive for the wedding. My youngest was applying for college, and I didn’t know if I would see her graduate from high school. Everything I dreamed of for my future was suddenly gone. All I knew was that I would die from breast cancer, and it would happen soon. It was as if I’d acquired my very own black rain cloud, and it was raining on everything in my life.

I’m lucky that Herceptin was discovered before my diagnosis. It was my first line of therapy, and 14 years after diagnosis it’s still keeping me cancer-free. While I still hesitate to hope for things or plan things too far into the future, I’m finally feeling that for a while, I have my life back.

~ Linda Hansen

My Story Matters

My grandmother had stage 0 breast cancer in her 70s. She chose not to treat it and died from other causes in her 80s. I asked for an old-school baseline mammogram at 35 and then began regular screening mammograms at 40. I had my two children in my 20s and breastfed both of them a year each. I had been a healthy eater, fit, and a non-smoker/drinker for my whole adult life.

My mammogram reports declared dense tissue and I was NEVER offered additional screenings like ultrasound or an MRI. And I did not know to ask for them. My mammogram reports never concerned my GYN doctors.

In January 2021, at the age of 46, I had my mammogram and it was negative. The next month I saw a slight area protruding from my left breast when I looked in the mirror. I could feel a lump, but my smallish breasts had always felt glandular. I was in the sore breasts/bloat time of my cycle and I waited a couple of weeks. There was definitely a lump.

I went to a nurse practitioner at my GYN office and she thought everything felt normal. I asked for the diagnostic mammogram order anyways.

Later that week, I had the diagnostic mammogram and then was taken back for ultrasound. A radiologist was called in to look too. This was in the time of facemasks-for-all and I could see it in her eyes. And I knew.

A few days later I had a biopsy and it showed invasive ductal carcinoma.

I had a double mastectomy and lymph node biopsy in March 2021. Cancer was found in 2 out of 3 sentinel nodes. I was staged at 1b because of it being hormone receptor positive. I began a thorough cancer treatment journey. Five months of chemotherapy and then 25 radiation therapy treatments. And now 10 years of endocrine therapy, which might just be the hardest part!

3D mammography–and the radiologists who read them–missed my 2 x 3cm mass. Ultrasound and MRI couldn’t visualize the affected lymph nodes. Looking back at my mammogram reports, they were never read by a doctor with “breast specialist” in their bio.

I am thankful to be alive and well and have supportive family and friends. You have a new normal after cancer. The surgery and treatment took–and keeps taking–a big toll on my body. The journey is hard, but God has preserved and sustained and grown me!

~ Karen Karyshyn

My Story Matters

My name is Ashley Inda. I am a mother of two, wife, daughter, sister, friend, occupational therapist, advocate and breast cancer survivor.

I wish I could say that my story was an anomaly, that my breast cancer was missed due to my dense breasts as a fluke, an unlucky, rare occurrence but as you may have already discovered it is a shared story with many women across this country and it needs to end.

By sharing my story I hope that it will inspire you, empower you and ignite you to join our fight to make it essential that individuals with dense breasts have access and coverage of supplemental screening in order to have a COMPLETE BREAST CANCER SCREENING!

MY STORY MATTERS!

At the age 35 years old after finishing nursing my daughter for nearly three years I discovered several lumps that were new to me. I went to my primary care doctor who ordered a mammogram and ultrasound after a breast examination to get it checked out. The final diagnosis of those two screenings were just that I had DENSE BREAST TISSUE, no breast cancer detected. Phew.

Six months went by and I noticed the lump on my left breast hardening and becoming larger. My primary care doctor did a breast examination at a routine physical and ultimately ruled it to be a normal breast exam, just “DENSE BREAST TISSUE.” This information was incorrect (which I know now). You can’t feel dense breasts, it’s only a radiological finding. “Just DENSE BREAST TISSUE” was used in a way to alleviate my fears when in reality it should have elevated them.

Not wanting to make a mountain out of a molehill, I left it alone. I left the cancer growing inside my left breast alone. Two years went by and my symptoms only worsened. My left breast hurt, I couldn’t lay on my left side, hugs from my kids hurt and in the quiet moments in the shower during breast examinations, I went back and forth, back and forth trying to reassure the whispers my body was sending me that it was fine, it was all okay. I can’t tell you how many times I had “symptoms of breast cancer,” pulled up on my phone while doing a self examination. I didn’t have inverted nipples. I didn’t have drainage from my nipples. I didn’t have many of the symptoms listed, I only had a huge mass in my left breast (that took up my whole breast), tingling and feeling of fullness AND pain all the time.

When at a routine physical two years later my primary doctor after doing another breast examination ruled, “normal breast exam, just DENSE BREASTS” I sighed and said, “I’m young, I have two young kids. I would like another mammogram and ultrasound to put my mind at ease.” She obliged. Putting my mind at ease was the farthest thing that happened at my second mammogram and ultrasound. I was biopsied on site and unfortunately I was diagnosed with Stage III, Triple Positive Breast Cancer. The cancer had spread to my lymph nodes.

Over the course of the past two years I have endured the following: chemotherapy, bilateral mastectomy, immunotherapy, radiation, hormone therapy and reconstruction surgery.

Here are the lessons i want you to learn from my story:

1. You know your body the best, if you feel something is off keep advocating for yourself. Find someone who will listen.
2. You don’t have to have all the “symptoms of breast cancer” listed on the various websites to have breast cancer.
3. If you have dense breasts you are 4-6X more likely to develop breast cancer AND breast cancer and dense breasts both show up as white on mammography (1). Breast density is one of the strongest predictors of the failure of mammography screening to detect cancer (2).

iF YOU HAVE DENSE BREASTS, YOU ABSOLUTELY MUST HAVE SUPPLEMENTAL SCREENING IN ORDER TO HAVE A COMPLETE BREAST CANCER SCREENING!

Speaking of supplemental screening, not all modalities and supplemental screening options are created equal, for example ultrasound which I did receive the first time only finds an additional 3-4 breast cancers BUT MRI finds 16-25 per 1000 (3).

If you have dense breasts it’s important that you know your lifetime risk of developing breast cancer (fill out the Tyrer Cuzick calculator) and have a conversation with your primary care doctor to determine which supplemental screening modality(ies) would work best for you.

BUT if I could go back in time, I wish I could have received an MRI after I returned to my primary care doctor with worsening symptoms.

For all of you currently in the thick of it, know this, it gets better. Tough times don’t last.

And when you are feeling up to it, join me and my friends at “My Density Matters” and help us pressure our legislators to pass laws that require insurance companies to cover the cost of supplemental screening and imaging in women with dense breasts AND request that the US Preventive Task Force update their guidelines to reflect what the American College of Radiology and countless numbers of high-level evidence-based studies that supports the requirement for women with dense breasts to receive supplemental screening in addition to mammography for breast cancer screening.

MY STORY MATTERS and like Leslie Yerger always says, it’s important to share MY story so that OUR story doesn’t become YOUR story. Thank you for allowing me to share my story and hold space for our collective experience as it relates to breast density and a delayed diagnosis of breast cancer. Knowledge is power, let’s go out there and change the future. Let’s rewrite the narrative for women with dense breasts.

Boyd NF, Rommens JM, Vogt K, Lee V, Hopper JL, Yaffe MJ, Paterson AD. Mammographic breast density as an intermediate phenotype for breast cancer. Lancet Oncol. 2005;6(10):798–808.Areyoudense.org (2022). Are You Dense? Fact #1. Are You Dense, Inc. https://www.areyoudense.org
Areyoudense.org (2022). Are You Dense? Fact #1. Are You Dense, Inc. https://www.areyoudense.org
Covington M. Supplemental Breast Cancer Screening: Unmasking the Truth. The Radiology Review 2023 Jul 29. https://www.theradiologyreview.com/the-radiology-review-journal/unraveling-the-complexities-of-supplemental-breast-cancer-screening

My Story Matters

Straight out of the womb, I was a rule-follower. I heed marching orders to the letter … especially when it comes to doctors. So when they told me, “Get a mammogram every year.” … I complied. Years later when they became breast-density-aware, they told me, “Get a 3D-mammogram every year.” … I complied.

Each year I would get my all-clear 3D-mammo and gleefully skip through the next 365 days, knowing that even if a little cancer ever started growing … it could never be more than 1 year old and so, so tiny. Because I was so diligent, the most I would ever need is a lumpectomy. 100% — I believed these to be FACTS, not theories.

In 2014, they thought they saw a small shadow and couldn’t quite get a handle on it. So they sent me to the biopsy specialist who studied my scans, examined me, and declared “There is nothing there for me to biopsy – you are totally fine. Sometimes a shadow is just a shadow.” SO eager to hear those words, I didn’t question his conclusion at all — I took my all-clear paperwork and once again was skipping in the sunshine.

He was the authority figure. And he was dead wrong.

Four years and four all-clear 3D mammo’s later … they catch a more prominent shadow and diagnostic scans ensue. This time they find more than a shadow … invasive lobular cancer. But we are way, WAY beyond lumpectomy-territory.

“Your tumor is approximately 4 inches long.” …….. WHAT?!? What sort of wildly aggressive cancer grows 4 inches in just ONE YEAR?! The doctor gently informs me, “Based on the cells, we estimate it’s been growing there for about 10 years.”

How can this be? I followed the rules! I have annual scans! I did what the doctors told me!

For a DECADE cancer grew inside me while doctors smiled and waved and sent me “all clear” letters, when the entire time … the 3D scan of my breast was like trying to shine a flashlight through a cement block. But no one talked about that.

And because of that, we now had to talk about mastectomy, reconstruction, treatment, and how I am lucky to be alive. Being a rule-follower almost cost me my life.

Please – advocate for yourself! Don’t settle … don’t view your 3D-mammo as your get-out-of-cancer-free ticket. If you have dense breasts, you need MORE … the fallibility of 3D is no longer a secret. Push for additional scanning and LIVE.

~ Kim Penny

My Story Matters

BE THE CHANGE

My Density Matters – this statement couldn’t be truer for me. I was diagnosed in January 2022 with stage IV metastatic breast cancer. What a big surprise when all my previous mammograms were normal, the last one being January 2021.

Since this diagnosis, which turned my world upside down, I had plans for retirement a few years down the road, and many other plans that may not happen now. I couldn’t understand how I could be Stage IV – I did everything right! How could this be? How long did I have cancer in my body for it to get to that stage?

I was angry, depressed, scared, and numb. Rather than sit and wallow in ‘WHY ME’ I decided to get educated. I learned very quickly that I had been misinformed and received inadequate screening. I have dense breasts. I was told a 3D mammogram was sufficient. WRONG! I should have received other screenings to accompany it.

The cancer I have is called Lobular carcinoma known as the “SNEAKY CANCER”. It hides, it appears in lines on a mammogram, and is hard to detect in dense breasts. This prompted me to post on my Facebook page about everything I was learning to help save other women from the fate I now face. Because of this diagnosis, I will potentially lose years off my life, I can’t do the things I did previously, not to mention the emotional and physical impact it has put on me, my husband, and my family.

Through this process, I met Leslie Ferris Yerger through a mutual friend and contact. Leslie has the same cancer as I do, and is educating people about the inadequacies of our current breast cancer screening norms for women with dense breasts. Leslie is using her diagnosis to save lives. I am very happy I learned of My Density Matters, and I participated in ‘Find Out My Breast Density Day’ on 2/22/22.

I wish I had known about this a year or two years ago. It may have changed my diagnosis. I urge everyone to share the My Density Matters information with your family, friends, co-workers, neighbors, everyone and anyone, and remember breast cancer happens to men too! I shared information with my family and co-workers who did not know about dense breasts and the risks, and as a result I had about 15 people request different screenings and maybe even saved their life.

I urge you to share this website – you may save your life or the life of someone you know or love.

We need more education on dense breasts and essential additional breast cancer screening options.

Join us in sharing MY DENSITY MATTERS and ‘Be the Change’ because breast density matters!

~ Debbie DeGraw

My Story Matters

It Didn’t Run in My Family Either

I was 32 when my hand brushed up against my right breast, a lump. I couldn’t stop touching it. I couldn’t stop obsessing about it. I called my sister who is a doctor and she assured me it was probably a cyst. Nonetheless she told me to call my doctor.

I remember walking into my primary care physician’s office, crying, convinced this was not a cyst. My mind was going to places that I couldn’t control. My blood pressure is normally low; when my doctor took it his expression showed me that today wasn’t normal. He sent me in for a mammogram and an ultrasound. Thankfully, my assumptions were incorrect, it was indeed a cyst. I could breathe again.

I had a follow up with my doctor a couple weeks later. He suggested that I see a breast surgeon. I looked at him, questioning his sanity & my own for that matter. I was just told that everything was fine, why would I have to go to see a breast surgeon?? He proceeded to tell me that sometimes it’s nice to have a specialist look at the results to be safe. I walked out of the office with the breast surgeon’s phone number in my purse not sure if I would call. I just wanted to move on with my life, I was done with this. However, I had a nagging feeling to just make the appointment. I didn’t know at the time, but while making that decision, I was inviting someone into my life that was going to save it one day.

I sat in her office crinkling the paper on the exam table trying to breathe through my nervousness. She walked in, a beautiful blue-eyed woman with such a calming presence that I was immediately at ease. She introduced herself & put my mammogram results up on the screen; she explained to me that I have extremely dense breast tissue (DBT). I had no idea what that meant. She showed me exactly what it looked like, vs someone who doesn’t have dense breasts. She continued to explain, “You should be monitored every year with a mammogram and an ultrasound. Mammograms aren’t enough for women with DBT, cancer can hide very easily which is why additional screening is needed.”

I sat there dumbfounded. I proceeded to tell her that I was 32 (as if she didn’t read my file) & breast cancer didn’t run in my family so this made no sense to me. She informed me that none of that mattered, I was at risk because of the DBT and it was enough of a risk for me to take this seriously.

So, that’s what I did — every year I would go in for a mammogram and every year the people performing the exam would question why I was there since I was so “young”. After that appointment, I would schedule my ultrasound with my surgeon. She would personally perform the ultrasound each year; a lot of people are amazed that a breast surgeon would do this yearly instead of being sent somewhere else for the screening. But this is what she did, and not only for me, I must add. She is a selfless doctor that I’m grateful to have in my life.

It had been 4 years since I began this routine, and this year was no different. I received my mammogram in October 2012 and was told my results were “all clear” and that I didn’t have to come back for another 4 years since I still wasn’t 40. Every year they told me the same thing, come back when you are 40, and every year my doctor told me to ignore what they said. “I make those decisions, not them.”, she declared.

I had my ultrasound in December 2012; it started out as always, I spoke incessantly, and my doctor listened. As she moved around my left breast, something was different, she was concentrating more, she was moving the wand with more purpose than usual. I kept talking as my anxiety started to rise, thinking that if I kept talking, she couldn’t tell me something I didn’t want to hear.

“Are you late for your period?”, she asked. I was late which was normal for me when under stress which I was with the holidays approaching.

“Ok, that’s probably why things look it a bit off. I’m sure it’s hormonal but to be sure I want you to get an MRI.”, she declared.

Nausea. That’s what I felt, that’s all I felt. I’m going to be sick; this cannot be happening. It’s a week before Christmas, what kind of cruel joke is this?? She assures me that she is taking this extra step to be sure & that at this point there is nothing to worry about.

This was a Monday; I had the MRI scheduled for that Wednesday. By Wednesday night I was driving home from a friend’s house, and I received a phone call that they would like me to come in the next day for a biopsy.
I laid on the table with my sister by my side. The radiologist put my hand where the suspicious spot was and asked me if I ever felt that before. I told her no. She proceeded to tell me & my sister that she didn’t think this biopsy was necessary because she wasn’t “impressed” with the MRI results to justify it. Thankfully, having a sister who is a doctor really helped because I will be blatantly honest, I was looking for any excuse to not get this test done. And this doctor was basically telling me this was a waste of all our time.

“Put the needle in.”, my sister proclaimed. I signed papers to let my sister receive the results because I felt like getting good or bad news would be best coming from her.

It was 9:00am on Christmas Eve, yes, Christmas Eve, … the phone rang. I knew it was going to be a call that changed my life. Seeing my sisters number pop up on the caller ID just confirmed this. I’m a late sleeper when I’m off work, and everyone knows not to call me before 11:00am, but this was obviously a call that had to be made.

“I got a call this morning regarding the biopsy results, and it is cancer. I’m so sorry.”, she sadly told me.

I couldn’t tell you exactly what happened next. The only thing I know for sure is there were a lot of tears. I was 36 with no family history and all clear mammogram & I was just diagnosed with breast cancer. I thought I was safe. How the hell did this happen??

This was when I realized none of that mattered.

Cancer doesn’t discriminate. Cancer doesn’t care about your economic status. Cancer doesn’t care about your race. Cancer doesn’t care about your gender. And cancer DEFINITELY doesn’t care about your age.

We are failing women all over the world based on fake criteria.

1 in 8 women will be diagnosed with breast cancer in their lifetime.
40% of women in the US have dense breast tissue. They are 4 times more likely to develop breast cancer.5% of women are diagnosed with breast cancer under the age of 40. That number might seem low to you, but to that 5% of women, that number is 100% because it happened to US. Those statistics are just that, statistics, numerical data that that takes that human portion out of the equation.

The criteria we should be concentrating on is proper screening for all women no matter their age or family history.

Breast cancer didn’t run in my family . . . now it does.

~ Jeannine Canino Bieda

My Story Matters

If it weren’t for my MRI, they never would have found it.

The cancer never appeared on ultrasound or mammogram. Only because I had extremely dense breasts was I offered supplemental screening.

~ Marie Gilbert

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

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/

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!

October 2024