Newly Diagnosed with MBC: Tests, Terms, & Tips with Dr. Rebecca Shatsky
The first days, weeks, and months after being diagnosed with MBC can feel like you’ve been dropped into a dangerous and alien landscape, one whose inhabitants speak a new and confusing language. Numb and bewildered, you face a mountain of medical decisions—each of them seemingly high stakes.
If that sounds all too familiar, take a deep breath. Our goal for this third episode in our 3-part series for newly diagnosed patients is to help our listeners
1. Understand the Basics of their diagnosis
2. Make Informed Decisions about the tests their doctors order—and understand what the results mean
3. Feel Confident and Empowered to ask their doctors and other medical providers questions and to advocate for their best treatment
OMBCL senior producer Martha Carlson began by asking newly diagnosed MBC patients about what was most difficult with their medical care. The responses shaped this episode because what she heard back touched on everything from hearing the news to treatments to tests. Martha turned to leading medical oncologist Rebecca Shatsky MD from UC San Diego Health for her take on these real-life, patient-focused topics. Dr. Shatsky not only demystified doctor-speak, she gets into the details of first steps and first tests for MBC subtypes, the differences between CTs and PET scans, what blood biopsies and tissue biopsies tell our oncologists and so much more. Because few things connect us better than sharing our stories, Martha also asked experienced MBC patients a single question: What do you wish you knew when you were first diagnosed? Throughout the episode, we hear from experienced patient advocates Dr. Kelly Shanahan, Sheila Johnson, Joan Mancuso, Marissa Holzer, and Ashley Fernandez.
Definitions
MRI: Magnetic Resonance Imaging is a non-invasive imaging technology that produces three dimensional detailed anatomical images. It is often used for disease detection, diagnosis, and treatment monitoring.
CT: Computerized Tomography scan combines a series of X-ray images taken from different angles around your body and uses computer processing to create cross-sectional images (slices) of the bones, blood vessels and soft tissues inside your body. CT scan images provide more-detailed information than plain X-rays.
PET: Positron Emission Tomography scan is an imaging test that can help reveal the metabolic or biochemical function of your tissues and organs. The PET scan uses a radioactive drug called a tracer to show both typical and atypical metabolic activity. A PET scan can often detect the atypical metabolism of the tracer in diseases before the disease shows up on other imaging tests, such as computerized tomography (CT) and magnetic resonance imaging (MRI).
PET-CT: The combination of CT and PET imaging reveals information about both the structure (from the CT scan) and the function (from the PET scan) of cells and tissues in the body during a single session.
Bone Scan: A procedure, also called bone scintigraphy, to check for abnormal areas or damage in the bones. A very small amount of radioactive material is injected into a vein and travels through the blood. The radioactive material collects in the bones and is detected by a scanner.
ctDNA: Tumors are made up of cells, and at the center of those cells is DNA. As cancer cells go through their life cycle, fragments of DNA can enter the bloodstream. This is known as circulating tumor DNA – or ctDNA, for short. ctDNA testing examines a patient's blood to detect DNA fragments from cancer cells.
Extravasation: The process by which any liquid (fluid or drug) accidentally leaks into the surrounding tissue. In terms of cancer therapy, extravasation refers to the inadvertent infiltration of chemotherapy into the subcutaneous or subdermal tissues surrounding the intravenous or intra-arterial administration site.
Liquid (also known as blood) Biopsy: A blood test that detects cancer cells or DNA that are circulating in the blood, called “circulating tumor DNA” or “ctDNA.” Like healthy cells, cancer cells die and are replaced. When these dead cells break down, they are released from the tumor into the bloodstream.
Links to Additional Information & Genetic Testing
You can listen to our previous episode on FES/PET Cerianna Screening for Estrogen Positive MBC patients for more information on this type of scan.
This article on blood clots/thrombosis by Diane Mapes provides additional information.
Meet the Guests of the Episode
Rebecca A. Shatsky, MD
Dr. Shatsky is a board-certified medical oncologist who specializes in treating breast cancer. She conducts clinical and translational breast cancer research at Moores Cancer Center at UC San Diego Health. She is the principal investigator of many clinical trials and is part of the national clinical operations leadership for the I-SPY-2 trial and ASCO metastatic breast cancer guideline panel. Her translational research focuses on the treatment of triple negative and lobular breast cancer and is funded by multiple sources, including grants from the California Initiative to Advance Precision Medicine and the Breast Cancer Research Foundation. Dr. Shatsky completed a hematology/oncology fellowship at UC San Diego School of Medicine. She completed her internal medicine residency at UCLA David Geffen School of Medicine and earned her medical degree from the Keck School of Medicine of the University of Southern California. She is board certified in internal medicine, hematology, and medical oncology.
Twitter: @Dr_Rshatsky.
Ashley Fernandez
Ashley was diagnosed with Denovo Metastatic breast Cancer at the age of 31 in April 2018. She is a fierce thriver who has been living with MBC while being a full time mom to her daughter Davyn and wife to her husband Carlos. Carlos is Active Duty Air Force, they are currently stationed in North Carolina. Ashley is also a powerful prayer partner and is active with the local church. She has done MBC advocacy through 2018 Ohio Metsquerade, Komen Public Policy, Public Speaking, Metavivor where she was one of the faces of their newest campaigns and Komen. She's always looking for opportunities to educate and empower others to advocate for the best possible health care, You are worth all good things in this world! She believes in living life colorfully, full of adventure and with intention. All MBC patients should be able to create memories and meet important milestones in their lives which is only possible with research. Ashley continues to educate and remind others those living with MBC are not statistics or shells, but people. 116 People die a day with MBC , Stage 4 truly needs more funding.
Marissa Holzer
Marissa is a 40-something "flattie" in sunny SoCal living with metastatic breast cancer (since March 2014), her boyfriend (and high school sweetheart), and her rescue schnauzer. She enjoys reading, stress baking, and roller skating. She is a Cure contributor and an advocate for aesthetic flat closure.
Joan Mancuso
Joan has been living with metastatic breast cancer since 2007. She was originally diagnosed with early stage breast cancer in 2003. Her MBC presented as a lung metastasis and then again with a second lung metastasis and also a brain metastasis in 2008. She has been without any sign of MBC since 2008 and discontinued treatment in 2020 based on medical advice. For over a decade, Joan has been involved in many breast cancer projects. She is currently an advocate member of ASCO and a member of their TAPUR Publications Group, including a team to develop Plain Language Summaries for TAPUR reports. Joan is a co-author of ASCO’s recent update of its Policy Statement on Biosimilar and Interchangeable Products in Oncology. She has been a member of the planning committee and speaker at the Metastatic Breast Cancer Research Conference’s annual meeting as well as an advocate member of the Translational Breast Cancer Research Consortium with Abramson Cancer Center, University of Pennsylvania. The TBCRC develops and conducts phase II clinical trials. She is a consumer reviewer for the Department of Defense Breast Cancer Research Program and has been an advocate on many scientific grant proposals at major cancer centers. Through SHARE Cancer Support Joan has been interviewed on talk radio to raise MBC awareness during Breast Cancer Awareness Month. Joan stepped down from employment in 2009. She was a special reports editor on a news desk for financial news.
Twitter: @2020VisionGirl
Sheila Johnson
When it comes to health equity and breaking down systemic barriers to care in the metastatic breast cancer community, Sheila Johnson is an inspiration to us all. Not only has Sheila been living with metastatic breast cancer for 13 years, she is also a 25-year United States Air Force military veteran.
With African American women dying 42% faster than any other race, Sheila has used her own experiences to enhance care for others and tackle this worrying statistic. Sheila is wholly committed to ensuring that not only is health equity awareness raised, but that people from marginalized and minority groups are included in conversations about their care. Sheila’s efforts are staggering and relentless. She has held positions as an ambassador, advocate and mentor with Living Beyond Breast Cancer, Young Women’s Initiative, National Breast Cancer Coalition, Shades of Brown Foundation, and The Metastatic Breast Cancer Project amongst others. Sheila is a Patient Insights Board member for Medidata bringing her voice to recruitment and inclusion of clinical trials to the African American community. She is also a Consumer Reviewer for METAvivor and the DOB Breast Cancer Research Program.
Sheila exemplifies inclusion, and despite her own ongoing health issues, she has given her time selflessly to engage and include others. She has spearheaded projects that have served to enhance diversity and promote equality, including being part of the Susan G. Komen Advocates In Science Program and as a Komen Scholar. Sheila’s remarkable story has been featured online (https://www.storyhalftold.com/meet-sheila-mcglown) and in publications including The Breast Cancer Wellness Magazine Winter 2018 Edition “Ending Disparity”, and “O” The Oprah Magazine September 2020 Edition “An Air Force Vet’s Hardest Fight Yet.”
Sheila is now a published author of “A Survivor’s Lens”, A Metastatic Breast Cancer Survivor’s Focus on Gods Word and Faith.
Sheila’s resiliency and energy are contagious, and she delivers excellence in all aspects of her life, personal and professional.
Kelly Shanahan
In 2008, Kelly had everything going for her: a busy and successful ob-gyn practice; a precocious 9 year old daughter; and a well used passport from traveling all over the world with her family to attend conferences, with a liberal dose of vacation on the side. When she was diagnosed with stage IIB breast cancer, she considered it a mere bump in the road.
And for five years, breast cancer was an aside, something to put in the past medical history section of forms. Even when she developed sudden back pain, Kelly never thought it could be breast cancer rearing its ugly head – a pulled muscle, a herniated disc maybe, but not what it turned out to be: metastatic breast cancer in virtually every bone in her body, with a fractured vertebrae and an about to break left femur. Kelly was diagnosed in 2013, on her 53rd birthday.
Neuropathy from the chemo cost her her career, but she has found a new purpose in advocacy. Kelly is on the board of METAvivor, a member of the Metastatic Breast Cancer Alliance, a Komen Advocate in Science, on the symptom intervention committee of the Alliance for Clinical Trials in Oncology, a grant reviewer and research advocate. She is passionate about getting patients to the table in the design, implementation, and follow up of clinical trials. Follow her on Twitter @stage4kelly.
Kelly Shanahan is a mother, a wife, a daughter, a doctor, a woman LIVING with metastatic breast cancer.
