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In December 2016, my sister, Lisa, was diagnosed with Inflammatory Breast Cancer. She was 44 and we had never had any breast cancer in the family so this was a big shock. I ended up flying back to Denmark a lot after Lisa’s diagnosis as she went through chemo and radiation, and I kept going home as things got worse. The cancer eventually spread to her other breast, liver, bones, and brain and mutated into triple negative. I stayed with her for the last months, and she died in August 2019 leaving two beautiful children and us all heartbroken and traumatized.
Then, I was diagnosed with Lobular Breast Cancer in March 2020 at the age of 42, and it seemed unreal. After my sister’s diagnosis, I had my first mammogram, and they sent me to the hospital for another mammogram along with an ultrasound due to my breast density. For the next two years, I kept going back for mammography and ultrasound every six months until one day, the radiologist came in to have a look, and he decided to send me for an MRI, which is probably why I’m still here today.
I remember asking him if I should be worried and he said “Only if you want to be” with a kind smile. Well…I was a classic double whammy case with category C and D dense breasts and a 10.5cm mass on the right with three small areas (LCIS) on the left as well. I was shocked that this had been allowed to happen and mortified by my initial ignorance towards the risks associated with breast density and breast cancers like lobular that doesn’t form a lump due and is consequently known as “sneaky,” or as I prefer to say, “insidious.”
~ Gitte Henssel Joergensen
I had my first ever mammogram at 40 years old and the results were sent to my portal 10 business days later- “normal, but in fine print- heterogeneously dense breasts.” Being a Nurse Practitioner, I was not comfortable with that report and went to my GYN. I had done a self exam, and to my surprise I felt a small lump in my left breast. My GYN felt it and dismissed it, saying it was most likely a fibroadenoma from all my pregnancies. I demanded an ultrasound- she said ok but “no rush- get it in the next 6 months.” I went a month later and was immediately getting squeezed in for a biopsy that day. In my Nurse heart, I already knew it was cancer.. and 5 days later my fears were true — Stage 2 I Invasive Ductal Carcinoma — and it looks like you are “borderline triple negative.”
My entire world shattered that day. All I can think of is my poor little babies, they need their Mommy. I am one year out from my double mastectomy, and I would never let a friend or loved one wait even a day for further imagining. Dense breasts need more imaging — end of story.
~ Dania Francis
I was told that I had dense breast tissue and an ABUS was recommended. Our insurance did not fully cover an ABUS and the out of pocket/co-pay was significant. I did not have an immediate family history of breast cancer and was not considered high risk.
I went from a clear mammogram in Feb 2017 to a 6 cm mass in Sept 2017. I was Stage 2B IDC and ILC Er/Pr+ and Her2-. 16 rounds of chemo for the IDC, a double mastectomy, where the remaining ILC 3cm tumor was removed, 28 rounds of radiation, Diep flap reconstruction and 2 revisions with the final revision in Dec 2020.
~ Deana Segreti
I was a interventional radiology nurse. I started getting yearly mammograms at age 40.
In 2009…..I was maybe 42…I got called back for a diagnostic ultrasound and mammogram…I still remember Dr Patel…..one of the radiologists that worked in my group….He had his US wand right on my cancer…..”it’s nothing,” he said.
2 yrs later i found the lump…it was stage 3 by now. I also read my radiology reports. If I had read them sooner, I would have gotten second opinion or demanded biopsy.
After treatment I quickly advanced to stage 4….i had to travel to Texas from Virginia to get scans…..2 oncologists in Virginia dismissed my hip pain.
In fact, every time there is something horribly wrong . . . I am dismissed by doctors.
Every time.
I’ve had besides MBC since 2013:
~ Fran Clark
I had gone for my annual screening mammogram. I was given the news that it was fine. At that time, the radiologist’s assistant told me that due to dense breasts (which I was told every year about), and family history (my mom), I qualified for a study involving a mammogram with contrast solution. I also had to come within two weeks. I decide to participate, thinking mom would want me to if she were here. Plus I like science and research. This mammogram with contrast had a bi-rads 4 result. Subsequently biopsy indeed showed a small (1cm) tumor. Invasive ductal carcinoma. Also invasive ductal carcinoma in situ. I was also diagnosed with lobular carcinoma in situ. I can’t help but think how so many of us with dense breasts are given the all clear following a traditional mammogram.
~ Kathy Serago
I was diagnosed with stage 1, PR/ER+ breast cancer, only five months after being diagnosed at 39 with stage 2A sigmoid colon cancer. I also have the CHEK2 gene mutation. My story begins with family history. Because my mother was diagnosed with breast cancer at age 39 and passed away at age 45, I was enrolled in a “high-risk” program that allowed me to undergo screening and surveillance earlier than the general population.
In February of 2021, I had a routine mammogram just as I had done yearly since my early 20s, and my results were clear. One month later, I received my colon cancer diagnosis and began CT scans of my chest and abdomen to make sure no other tumors were found. The doctors saw only the colon tumor and nothing else. During this time, I had a scheduled appointment with the breast specialist who runs the high-risk breast cancer program. We spoke about scheduling my first breast MRI since I was approaching the age of 40.
Even though I was about to start my journey fighting colon cancer, I scheduled my MRI in August and that is when it was discovered that I had a small lesion in my right breast. I was then scheduled for a guided biopsy and from there I was given my breast cancer diagnosis.
This is when I also found out that I had a genetic mutation that was not previously on the DNA panel option when I first got tested for BRCA between the years of 2004-2005 and was negative. Due to the loss I experienced with my mom’s diagnosis, and now having my own second diagnosis only 5 months after the first, I knew I wanted to be aggressive with my next choice.
I selected to do a double mastectomy without reconstruction and an oophorectomy to remove both of my ovaries. I do not recall ever being told that my breasts were dense after a mammogram result for many years. It was only after the advances in technology that allowed a patient to read their medical chart electronically that I noticed an issue with a mammogram report. It stated, “heterogeneously dense.” At that time, I assumed it was a medical term for large breasts. It was never explained to me that it meant it could obstruct the clear view of a cancer tumor.
After my diagnosis, I went back into my electronic chart out of curiosity and noticed that around the year 2016, that term was updated to read, “heterogeneously dense, which may obscure small masses.” But again, that was not discussed with me during those times. Because of research, experience, and self-education, I have been passing this information along to other women who either are not familiar with the term or, like myself, assumed it meant they just had “large breasts.”
I am now on Anastrozole for 15 years as an extra precaution to lower my chances of a reoccurrence. This comes with many physical side effects that I am still adjusting to; however, I am beyond blessed to share that I am approaching my 3-year cancer-versary in October 2024, of being in remission and cancer-free!
I am continuing on the journey of healing and slowly venturing out of my comfort zone to share my story in the hope that it helps others.
~ Melissa Rider
[Edited by JC, 8/02/24]
I was called back in 2018 for a second look, because of dense breasts. A stereotactic biopsy was done, and I was told it was benign. They conducted yearly mammograms on me and kept informing me I had “dense breasts.” I had surgery (lumpectomy) on 1/27/2022 and tried adjuvant therapy (Anastrozole) with 33 radiation treatments.
The A.I. pills destroyed my left knee, and I ended up in a wheelchair for 6 months and quit taking them. I had been a participant in the MOST osteoarthritis joint pain study from its inception until 2020, which was about 20 years of MRIs and X-rays at the University of Iowa Hospitals and Clinics. The inflammation from removing all the estrogen from my system was excruciatingly painful. This led to osteoporosis and gave me teariness, mood swings, brain fog, blurry vision, insomnia, and the worst pain I’d ever had in 76 years of life. Yet, I was told that “the only side effect from Anastrozole is a bit of stiffness in your hands and fingers, and it goes away when you quit taking it.”
My Illinois oncologist also refused to order an Oncotype test, so I did not receive an Oncotype score for planning treatment and did not find out what it was until 2023 when my Texas doctor got it for me—it was 29.
I was also turned down on my request, instead, for a Ki67 after surgery, suggested by my surgeon. My Illinois oncologist, when I relayed the surgeon’s suggestion that the ki67 might give me the peace of mind about recurrence that I craved, along with some percent of recurrence data, said, “I don’t order that for you. You’ll have to get someone else” and walked out.
His response to my listing of the horrible side effects I was having was to say, “Don’t take it then,” and to walk out again. There were no other suggestions as to changing the A.I. pills to Tamoxifen or any discussion at all of what I was going through. I had to have 32 ml of an anti-inflammatory injected into my left knee and 6 ml of Durolane, plus Tramadol for pain, at an Oak Brook Joint Pain Clinic in Illinois, because he denied concern the Anastrozole had made my osteopenia (-1,4T at outset) much worse (-2.2T).
On my last trip to my new oncologist in Iowa City in May 2014, I asked if he could order either an MRI or a superior mammogram for this year’s mammogram, which I would have to wait until late August to have because of insurance. He said, “Oh, you can order that yourself. Anyone can,” and left it up to me. I pressed that I’d like to have the “gold standard” of detection, because I have dense breasts, and, after a diagnostic mammogram in February 2023, I had flunked a HerScan test I paid for out of pocket.
I was told that I could only have the “better” form of test or an MRI if the last radiologist had made notations on my chart to that effect, so I guess that was a “no” to giving me the tests that would pick up on the reformation of a tumor. My late-in-the-game Oncotype score of 36% was likely because I had quit the adjuvant therapy drugs.
I tried taking Tamoxifen for 5 months after the disastrous and ill-advised Anastrozole experience, which lasted from February 2022 (less than a week out of surgery, when I was also taking 500 ml of Cephalexin for a seroma) until my knee blew out in September 2022.
I was off for 9 months, got my Oncotype from my Texas oncologist, and was on Tamoxifen for 5 months, which gave me non-stop UTIs and the most extreme fatigue of my life (could only be up for 3 hours at a time.) By then, my liver enzymes had gone through the roof and I was being tested for what could have caused that, although I have been “off” all anti-cancer adjuvant therapy drugs since August 2023.
As a result, I feel they have ruined me. My father died of liver cancer after it traveled from his colon, and I am petrified about this new series of side effects, which just surfaced on May 1st, 2024. I wrote to the original Illinois hospital about the negligent and dismissive attitude of my first Illinois oncologist after 3 of my former employees told me horror stories; one of which started, “He killed our mother.”
I received no response at all.
~ Connie Wilson
[Edited by JC 7/31/24]
By Ashley Inda
Fierce, loyal, kind, courageous, tenacious, dedicated, warm, funny, passionate, selfless, smart and loving are just a few words that described what Gail Zeamer was to all who came to know her. Arguably there is not enough time and words that captures the impact Gail has left on this world. Gail would want this post to share her story in hopes that it would save more lives so that her story doesn’t become yours.
GAIL’S STORY MATTERS
Gail, who was diligent about getting her yearly mammograms, received a delayed diagnosis of breast cancer, Stage IIIC in 2016 at the age of 47. Gail had dense breasts. Despite sharing her growing concerns about her new lumps at her yearly check ups, she did not know she had dense breasts, what the inherent risk factors of having dense breasts were nor did she know that mammograms miss up to 50% of breast cancers in women with dense breasts. After she was diagnosed, she asked her doctor why she wasn’t offered an ultrasound, they stated “that if everyone with ‘lumpy bumpies’ were sent for ultrasounds, the system would be overwhelmed.”
That didn’t sit well with Gail, she wondered, “Why hadn’t I known about my breast density and all the risk factors? “Why hadn’t my doctor talked to me about the risk factors and ordered supplemental screenings?” “What about all the other individuals who have dense breasts? Who is going to tell them? How will they know?”
So while Gail was undergoing chemotherapy, radiation, surgery, etc. to treat her breast cancer, she reached out to her state legislators and shared her story and her concerns about delayed diagnosis of breast cancer in women with dense breasts. After months of advocating, writing op-eds, doing radio and television interviews, providing testimony and meeting face to face with legislators, on April 3rd, 2018, the Wisconsin Breast Density Notification Bill 653 was passed and signed into law.
Gail resumed her busy life as a daughter, sister, wife, mother, friend and speech pathologist. She impacted the lives of children and families in her Birth-to-Three Program. She helped out at church planning fall festivals, and taught religious education. She was there for her daughters Sophia and Claudia in every way, watching them attend college and pursue their dreams. She enjoyed her time with her husband, Steve, and worked on home remodel projects. She took her dog Norman on walks around her neighborhood. She took the trips. She attended the celebrations. She gave her time. She embodied joy and made many more memories.
But she wasn’t done helping out those with dense breasts. She wasn’t done telling her story, educating the masses, and advocating for those with dense breasts who didn’t even know the danger that could be hiding within their dense tissue. With the little free time she had, she continued her involvement in the Wisconsin Breast Cancer Coalition. She again went to her local legislators and said, “Hey, this breast density notification law is just the beginning. Now we are telling women with dense breasts that they might need supplemental screening but they are having to decide ‘do I pay the $1,000 for a breast MRI that may or may not find cancer or put braces on my teenager?’ We need insurance companies to cover most if not all of the costs of supplemental screenings.” AND they listened!
The first version of the bill, in the 2021-22 session (Assembly Bill 416 and Senate Bill 413), included a $50 co-pay for additional screening as a concession to insurance lobbyists. Gail was at it again, working tirelessly writing op-eds, answering interview questions for newspapers, radio and television, and getting those meetings in with core legislators to gain support on the bills.
In the midst of all this she started getting excruciating headaches that eventually landed her in the emergency room and confirmed her worst fears…the cancer was back and it had spread to her brain.
As scared, angry and frustrated as she was to learn this and start the whole treatment process over again…chemotherapy, radiation, surgery, etc. she did not waver. She persevered to get this piece of legislation passed. She believed in it that much, she wanted this for her daughters for all of us. It was worth it if it meant Claudia and Sophia would be protected, would be covered.
Guess what? The bills never made it out of committee, both bills died.
Gail persisted, again she reached out to her local legislators and said, “We are not doing enough. We need to cover the cost of supplemental screening in women with dense breasts so they can have a complete breast cancer screening!” So for the 2023-24 legislative session, Assembly Bill 119 and Senate Bill 121 was created with the original version covering even more additional supplemental screening modalities and NO COST SHARING responsibilities from individuals with dense breasts! Dream bills with the most driven and determined leader Gail at the forefront.
As the cancer spread to her brain, stringing together thoughts and recalling information became increasingly difficult, but she NEVER GAVE UP! She continued her treatments and she continued to FIGHT FOR INDIVIDUALS WITH DENSE BREASTS. She gave up so much of what precious time she had left to the cause. She believed it was the right thing to do.
Sadly, despite having bipartisan support and it being an obvious choice for individuals with dense breasts, Assembly Bill 119 and Senate Bill 121 never made it out of committee, never made it to the assembly or senate floor for an official vote. BOTH BILLS DIED…AGAIN.
Even after the recent round of failed bills, Gail was still strategizing what the next moves should be. Invigorating our policy committee members who were feeling defeated at the failure of our government to do the right thing. Her drive inspired all of us to regroup and try again.
Unfortunately, in the midst of all of this her cancer continued to spread causing more discomfort and seizures. On June 2nd, 2024 Gail passed away at the age of 56 and with it a bright, guiding, driving light was dimmed.
Only dimmed because Gail provided us with maps and tools to navigate this forward and to band together and share our light to see this through.
That’s the magic of Gail, she still presides in all of the past, present and future of this movement.
Gail has left a legacy whose gift will keep on giving for many generations with many of us in the Wisconsin Cancer Coalition joining the movement after reading one of her articles or seeing her news interview on television and we stayed true to her unwavering support. She has saved countless lives with her message and mission, selflessly knowing that it was too late to have the legislation impact her outcome.
Let’s continue to light the way for individuals with dense breasts and honor the love and dedication that Gail showed to this movement, and do the following:
In summary, thank you Gail for your love and light. Your legacy lives on in all of us.
GAIL’S STORY MATTERS
In July 2019 I found a lump in my right breast. I had 9 years of annual mammograms up to that point, so surely this was not a big deal, right? On July 24, 2019 I was told it was a cancerous tumor and had already spread to my bones and liver (innumerable masses). The next day I learned it has also spread to my adrenal gland. In November 2020 we discovered it had also spread to my brain. As of this writing I have had 85 chemo treatments, radiation to my adrenal gland and shoulder, 3 rounds of gamma knife to my brain plus, and recently, 5 rounds of SRS to the newest brain tumor (my 12th).
I did not know that I had extremely dense breast tissue. I did not learn that until I already had Metastatic Breast Cancer. I did not know that I should have been receiving additional testing each year since mammograms are not effective in detecting cancer in dense breast tissue. In order to work through the anger I have towards the health care system, I work with My Density Matters to spread awareness of breast density. I hope that in telling my story, I can help other women find breast cancer at an earlier stage, when it is highly treatable.
I had not heard of Metastatic Breast Cancer until I was diagnosed. I share my story to spread awareness of this disease and to help raise money for #LightUpMBC to fund research specifically for MBC. Funding metastatic breast cancer research is my only hope for staying alive. I am currently on a treatment that did not exist when I was diagnosed 5 years ago.
I am married to my highschool sweetheart, Dave. We live on a farm in East Central Illinois that has been in my family for 4 generations. We have children – Ross, Darrin, and Haley. When I was diagnosed with MBC, my middle had just graduated high school and my youngest was still in high school. I have survived long enough (5 years) to see them all into their early 20s and for that I am grateful. But it is not nearly enough.
~ Heidi Punke Brown
Read my blog about life with metastatic breast cancer at: https://bluehavanaheidi.com/
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
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 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 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:
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.
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 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
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
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
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
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
—– 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 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:
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.
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.
Kim Penny is the Founder & Director of CyberSizzle Media.
Abigail Johnston is the Founder of Connect IV Legal Services.
Colleen Rosenblum & Bridgett Garratt are co-hosts of Hot Flashes & Cool Topics podcast.
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!
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/
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 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.
Tamoxifen is used to treat breast cancer. It is also used to reduce the chances of breast cancer in high-risk patients.
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