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UNHOOK THE CONFUSION

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HOW DID I NOT KNOW?
After 13 years of mammograms, no family history, and not one self-breast exam, I had no idea I had a walnut sized tumor. Why, after every mammogram, did I receive a letter saying “normal” with dense breasts? What did that mean? How did I not know that this was a HUGE risk factor for me? I had no idea what a tumor could feel like, I have never seen or felt one, have you? Why wasn’t I informed about my genetic risk factors until after I was diagnosed? It wasn’t until I heard the words “you have breast cancer” that I realized how little I knew about this complex disease. I want people to know everything I wished I had known before I was diagnosed in a way that resonates. I am extremely honored and grateful to have Dr. Nila Alsheik, Section Chief, Division Breast Imaging and Learn Look Locate Medical Advisor help us go behind the screens to UNHOOK CONFUSION!

After 13 years of mammograms, no family history and not one self- breast exam, how did I not know I had a walnut sized tumor? Why after every mammogram, did I receive small note saying “normal”, with dense breasts? What did that mean? How did I not know that this was a HUGE risk factor for me? How did I not know what a tumor could feel like? I have never seen or felt one, have you?! Why was I not informed about my genetic risk factors until after I was diagnosed? It wasn’t until I heard the words “you have breast cancer” that I realized there is a huge disconnect on how much we know about this complex disease. I want to make people aware of all of this in a way that resonates . I am so honored and grateful to have Dr. Nila Alsheik, Section Chief, Division Breast Imaging and Learn Look Locate Medical Advisor help us go behind the screens to UNHOOK CONFUSION!

BREAST CANCER
UNHOOK THE CONFUSION with Dr. Nila Alsheik
I got a note that says I have dense breasts? What does that mean?
I am only in my 20’s. Am I too young for breast cancer?
Do I really need a 3D mammogram?
What are the symptoms of breast cancer?
What does a tumor feel like?
BEING FEMALE
Spiritual Meaning of Mermaids
Like the vast sea in which these unique beauties dwell, life can also be a massive, infinite sea ridden by the waves of emotion. They sometimes are turbulent and at other times remain calm. Mermaids are seen as a reminder that we sometimes need to “let go and jump in” to this sea of life. Similarly, the mermaid is believed to sing captivating songs hearing which should give us motivation to take the plunge. Yes, just like the sea itself, life is also a mysterious ocean, but the mermaid points out that it is OK. We must still let go and jump into this unknown world and sway with the flow, taking life as it comes. Although, the mermaid also let us know that it will be right there, serving as our guide through the journey of life. LEARN MORE

Being female, the symbolism and meaning of the Mermaid ties to the Sacred Feminine, specifically Goddesses like Venus who rules love, and the Sea Goddesses like Calypso. This is not a woman who can be tamed. The fierce individuality among Mermaids is well known –so much so that they may resist settling down in any one spot.
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EDUCATE! EMPOWER!
Let Dr. Alsheik, the mermaids, and our perspective, help guide you through knowing more about your breast health.
Breast imaging guidelines average risk patients

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Breast imaging following diagnosis of breast cancer

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Patient advocacy

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Average risk patients with dense breasts

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Screening Mammography during Covid-19

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The future of Artificial Intelligence

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Patients with elevated lifetime risk of breast cancer

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A young survivor's perspective

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“I had no idea what dense breasts were. If I hadn’t learned about the risk factors from Cynthia, I would have had no idea what the letter meant that I received from my gynecologist. I may have completely overlooked it. Now I understand that I need to get further testing and speak to my gynecologist to get further screening."
-Allison, Georgia
"I trusted mammograms as my only screening, and never thought to do a self-exam until my mother at age 42 found a pea-size malignant lump in her breast that had not been found in her mammogram. This was eye-opening. I’ve since added self exam, breast MRI and ultrasound to my yearly mammogram screenings."
-Kim, Ohio
"I hope to educate women to do their self-checks and also insist on an ultrasound if they find a lump. When I was diagnosed, I had six tumors in one breast, including one that was over 4cm long, but the mammogram hadn’t seen any of them! Instead, it was the ultrasound that confirmed the presence of cancer in my breast and one lymph node. Mammograms are a wonderful tool, but they don’t always see the full picture for those of us who are young and have denser breasts."
-Beth, Ohio
"I am a seasoned C-Suite Executive, passionate about growing and amplifying the Learn Look Locate Global Breast Cancer Platform that was created to inspire, connect and educate everyone on their breast cancer journey. I, myself, was personally shocked, when in a conversation, I discovered from founder Cynthia Jordan, that even though as a self disciplined person with a thorough health regimen. I did not know that the simple line on my all clear yearly mammogram noting dense breasts meant more than I could have imagined. Regular mammogram screening on dense breast individuals cannot identify tumors! Armed with this knowledge I contacted my doctor and had the needed sonogram. Good news : no irregularities were found!"
-Judy, Pennsylvania
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Nila H. Alsheik MD

Section Chief, Division Breast Imaging. Co-Medical Director,
Advocate Caldwell Breast Center

“It is a privilege of a lifetime to be a medical advisor for the Learn Look Locate community, which seeks to empower and educate women worldwide with the knowledge and emotional support to make the best decisions for their health and future. Even in this day and age, there can be significant variations in cancer diagnostics and therapeutics, which can negatively impact one’s treatment course. Learn Look Locate seeks to bridge knowledge gaps to allow for patients and their families to advocate for the care most ideally suited for their unique conditions. I feel honored to walk alongside the tremendously courageous survivors and their loved ones in this community.”

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Breast Imaging Guidelines Average risk patients

a.) Annual screening mammography initiated at age 40, with 3D
Unfortunately, there is much confusion regarding screening mammography guidelines in the United States. The majority of Breast Radiologists follow American College of Radiology (ACR)/ Society of Breast Imaging (SBI) guidelines: annual screening mammography, initiated at age 40, preferably utilizing 3D mammography (Digital Breast Tomosynthesis or “DBT”). Federal dense breast laws mandate patient notification of “dense” breast tissue (tissue which is heterogeneously dense or extremely dense). Notably, although DBT is particularly helpful in dense breast patients, there is a demonstrated benefit to ALL patients, regardless of breast density. DBT has the dual and powerful benefit of reducing recall rate and increasing invasive cancer detection rate. Insist on your 3D mammogram!
b.) Average risk patients with dense breasts
In patients with average risk of breast cancer (lifetime risk under 20%) with dense breasts, annual screening mammography initiated at age 40, preferably with 3D Digital Breast Tomosynthesis is recommended. For dense breast patients, annual adjunct whole breast screening ultrasound is additionally recommended. Oftentimes, it is recommended that the 3D mammogram and the screening whole breast ultrasound is scheduled the same day. The whole breast ultrasound may detect masses that are not visualized on screening mammogram. Alternatively, the 3D mammogram may detect focal areas of concern not visualized on screening ultrasound. Therefore, 3D mammography and whole breast ultrasound are complementary to one another. The whole breast ultrasound cannot replace the 3D mammogram, as calcifications would not be visualized on a screening ultrasound.
c.) Patients with elevated lifetime risk of breast cancer
Approximately 10% of the patients in our health care system are characterized with an elevated lifetime risk of breast cancer, whether secondary to inherited genetic predisposition (ie. BRCA1/2, PALB2, CHEK2), prior history of biopsy revealing atypia, Tyrer-Cuzick score > 20% for lifetime risk, family history of first degree premenopausal relative with breast cancer, to name a few examples. For these patients, yearly 3D DBT screening mammography is recommended, in addition to one of the following: Breast MRI, Molecular Breast Imaging (MBI), or Contrast Enhanced Digital Mammography (CEDM). For all of these examinations, intravenous dye is administered. The principle of performing an examination with intravenous dye is based upon the fact that lesions of concern tend to demonstrate hypervascularity and therefore take up dye. These are functional examinations which are complementary to anatomic 3D mammograms. The sensitivity of cancer detection for Breast MRI is reported near 100%. However, as with any examination, there are also false positives reported with these examinations which may result in downstream biopsies and additional work-up

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Breast Imaging Following Diagnosis of Breast Cancer

a.) Preoperative role of Breast MRI versus Contrast Enhanced Digital Mammography
A diagnosis of Breast Cancer is overwhelming for many reasons. One of the major stressors to patients is the number of tests that may be required prior to definitive management of the breast cancer. However, if the appropriate tests are not performed prior to definitive management of the Breast Cancer, this may lead to untoward treatment outcomes, including operative re excision for positive margins or potentially, unexpected downstream breast cancer “recurrence.”
Pretreatment Breast MRI following the diagnosis of Breast Cancer is performed for the diagnosis of Invasive Lobular Carcinoma, can be performed when a breast cancer is diagnosed in the setting of dense breast tissue or if a patient has an inherited genetic predisposition, if the patient is node-positive at the time of diagnosis, if there is a concern that conventional mammography/ ultrasound is potentially under-staging the extent of the tumor, or if there is a positive axillary lymph node with an unknown primary breast cancer. Contrast Enhanced Mammography (CEDM) is emerging as a powerful tool to discern disease extent in these settings as well. Breast MRI is preferred if patients have a neoplasm that is far posterior in location and if there is clinical concern for chest wall invasion. Breast MRI is also preferred if patients arenode positive at the time of diagnosis, as MRI affords more comprehensive evaluation of the axillary region and the internal mammary chain. In the event that the patient requires neoadjuvant chemotherapy prior to definitive operative management of the neoplasm, Breast MRI and CEDM are often obtained prior to and following neoadjuvant chemotherapy to assess treatment response. The goal of the Breast MRI and CEDM are to set the patient and the surgeon up for success at the time of definitive operative management, to ensure negative margins and the avoidance of unexpected pathologies at the time of surgery.

Patient Advocacy
Why Learn Look Locate

After 13 years of mammograms, no family history, and no self-breast exam, I had no idea I had a walnut sized tumor. After each mammogram, I received a letter telling me everything was “normal” and I have “dense breasts.” What does that mean? I had no idea that “dense breasts” were a HUGE risk factor. How could that be? The way it was put in the letter made it seem like an afterthought, nobody mentioned that I needed additional screening. Do other people know this? I didn’t do self-breast exams because I had no idea what a tumor felt like. I had never previously seen or felt one. Have you ever felt a tumor? Why wasn’t I informed of my genetic risk factors until after I was diagnosed? It wasn’t until I heard the words “you have breast cancer” that I realized how little I knew about this complex disease. After my diagnosis in 2018, I created Learn Look Locate, a welcoming web/social media presence that resonates with women in all phases of cancer awareness, prevention, diagnosis, and treatment because it is built with and for them. Questions get answered, experiences are shared, and offerings are tracked down and promoted—all based on the community’s submissions, needs, and wants. I am extremely honored and grateful to have Dr. Nila Alsheik, Section Chief, Division Breast Imaging and Learn Look Locate Medical Advisor help us go behind the screens to UNHOOK CONFUSION!

Cynthia, Founder

Average risk patients with dense breasts

In a patient with dense breasts of average risk, annual screening mammography is recommended to be initiated at age 40 with 3D/ Digital Breast Tomosynthesis with consideration of annual adjunct whole breast screening US. Fast Breast MRI is now available at select sites for those of average risk and Fast Breast MR has comparable sensitivity to the full Breast MRI protocol. The Fast Breast MRI takes place in a truncated time frame and involves the administration of intravenous dye.
It is important to note that dense breast tissue (heteregeneously dense or extremely dense breast tissue) is an independent prognostic indicator for breast cancer, which increases lifetime risk of breast cancer. Dense breast tissue may obscure subtle neoplasm on a mammogram. The sensitivity of mammography drops significantly with dense breast tissue and even further with an inherited genetic predisposition to breast cancer. Therefore, it is increasingly important to offer adjunct annual screening in addition to the mammogram when a patient has dense breast tissue.
Federal legislation on February 15, 2019 directs the FDA, through the regulatory process, to develop breast density reporting language to ensure that mammography reports and summaries received by patients and their providers include appropriate information about breast density. In the US, the majority of the states also have state level legislation mandating dense breast reporting to patients. At Advocate Aurora Health Care, we initiated dense breast reporting to patients far in advance of state and federal legislation in 2015. We then mandated provider level notification of breast density in 2017 and initiated our system wide whole breast screening US program in 2017. We have over a decade of experience with 3D mammography/ Digital Breast Tomosynthesis, one of the largest longitudinal cohorts of Digital Breast Tomosynthesis/3D programs in the country. As a patient, it is critically important regardless of breast density, to receive an annual 3D/DBT mammogram beginning at age 40

Learn more at breastcancer.org

Learn more at densebreast-info.org

Learn more at areyoudense.org

Screening Mammography during Covid-19

•During the early months of the COVID-19 pandemic (March/April 2020), there was a near total cessation of Screening Mammography in the United States. Screening mammography volumes plummeted to 1% of baseline secondary to many factors: executive orders in many states prohibiting elective procedures, the need to conserve personal protective equipment (PPE), the lack of social distancing protocols in many institutions.

• By July of 2020, the majority of US breast centers were open and screening mammography volumes rebounded to 66% of baseline. However, there were significant and troubling lags in rebounding to screening mammography in Hispanic and Asian women. This exacerbates known socioeconomic and racial disparities in health care access in the US.

• As 2020 concluded, there were still significant cumulative deficits in the US in missed mammograms accumulated.

• This will likely have important downstream health consequences, as increased volumes ABOVE pre-pandemic levels are required to make up the cumulative number of missed examinations. Also, we may start seeing cancers diagnosed at later stages, which are harder to treat, secondary to decreased preventative services during this time period

• The CDC also reported a sharp decline in breast cancer screenings (87%) and an 84% decline in cervical cancer screenings during the early months of the pandemic.

• If you have not received your annual mammogram, do not delay seeking preventative services. The vast majority of health care institutions have rigorous safety protocols in place including social distancing, masking, enhanced sanitization, COVID19.
Sprague BL., O’Meara ES, Lee CI, Lee, JM, Henderson LM, Buist, D, Alsheik NH et al. Prioritizing breast imaging services during the COVID pandemic: A survey of breast imaging facilities within the Breast Cancer Surveillance Consortium. Preventive Medicine. Volume 151, October 2021.
Sprague BL., Lowry KP, Miglioretti DL, Alsheik NH et al. Changes in Mammography Use by Women’s Characteristics During the First 5 Months of the COVID-19 Panedmic. JNCI: Journal of National Cancer Institute. March 29, 2021.

The future of Artificial Intelligence in screening mammography

Artificial intelligence will be a powerful adjunct to screening mammography interpretation going forward. Artificial intelligence algorithms in screening mammography are based upon machine learning, in which the algorithm is trained on large data sets with either pathology confirmation of cancer or long term follow up to confirm benign etiology. The algorithms tend to mark regions of suspicion on the mammogram with percent probability of malignancy. These algorithms, at least initially, will complement the radiologist interpretation without replacing the radiologist. The goal of artificial intelligence is to reduce recall rate while increasing cancer detection rate and improving efficiency in mammographic interpretation.

EF Conant, AY Toledano, S Periaswamy et al. Improving Accuracy and Efficiency with Concurrent Use of Artificial Intelligence for Digital Breast Tomosynthesis. Radiology. Published online July 31, 2019. Learn more

Patients with elevated lifetime risk of breast cancer

High risk women are those with a BRCA gene mutation and their untested first degree relatives, women with a history of chest wall irradiation between 10-30 years of age, women with 20% or greater lifetime risk of breast cancer.
Annual 3D mammography is recommended starting 8 years following radiation therapy but not before age 25 in women who received mantle radiation between 10-30 years of age. Women with an inherited genetic predisposition to breast cancer (ie. BRCA gene) are recommend to initiate breast cancer screening 10 years earlier than age of diagnosis of first degree premenopausal relative but not before age 30.
Breast MRI in high risk women has a higher sensitivity than mammography and the combination of mammography and MRI in this population exhibits the highest sensitivity. In high risk population, MRI and mammography combined have higher sensitivity than ultrasound and mammography combined. In high risk women for whom adjunct screening is recommended, annual breast MRI recommended. This may be performed annually at the same date of mammography or high risk women may alternate 3D mammography and Breast MRI every 6 months. Screening high risk women with Breast MRI has been demonstrated to be cost effective. The American Cancer Society recommends annual Breast MRI in high risk women and the American College of Radiology and Society of Breast Imaging have endorsed these recommendations.
Notably, screening ultrasound as well as Contrast Enhanced Digital Mammography (CEM) may be performed in patients who cannot tolerate Breast MRI or in those who have a contraindication to Breast MRI.
Molecular Breast Imaging (MBI) in women with dense breasts increases significantly the cancer detection rate as compared to mammography alone. Large scale population studies of MBI for screening have yet to be performed, and whole body radiation dose with this technique remains of concern.
ACR Appropriateness Criteria Breast Cancer Screening Document (Revised 2017), Expert Panel on Breast Imaging, Mainiero, Martha, Moy, Linda, Baron, Paul et al.

From my perspective

Being 32 with dense breasts and a family history of breast cancer, I was never given the option to undergo genetic testing. Also because of my age I was not able to get mammograms, so simply because of my age I was unable to have any line of defense as it comes to pre-screening. Even when I found the lump in my breast, doctors turned me away that I was too young to have breast cancer, but I saw a breast surgeon because I knew in my gut something was wrong. The breast surgeon then told me, I was too young for breast cancer and most likely it was benign. So, I was requested a mammogram and ultrasound which showed a mass in my upper left breast. The biopsy confirmed that I did have stage 2 estrogen positive breast cancer. In my opinion, I believe doctors need to take the complaints of their patients more seriously without judgement based on race, age or gender. If I didn’t speak up, I would not be here today. If you see or feel something please say something and don’t stop until you are heard. You know your body better than anyone else.

Sammie, Philadelphia.

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