Bridging the Gap - Health Equity for all

Susan's Breast Cancer Journey Part 1: +StoryMD Health's Technology Empowers Her Personalized Health Journey

I am on a <a data-library="pqD7p1gC3d" data-tabindex-counter="1" data-tabindex-value="none" href="https://storymd.com/journey/pqD7p1gC3d-breast-cancer-journey" tabindex="-1">breast cancer</a> journey that I am compelled to share with anyone who is currently experiencing a serious health crisis and finding themselves wearily navigating today’s healthcare system, coping with its reliance on the impersonal patient portal being the messenger of your health data. Throughout my health journey, I have traveled many winding paths, but they have all led me to one stark reality. Along with the outsourcing of your critical medical information messengering to your patient portal, our current healthcare systems have dodged instituting a key ingredient that is proven to enhance patient care and healing: a system-wide agenda that prioritizes a uniform method of delivering personal health literacy that follows you along your personal journey. Upon my diagnosis, I was shocked and filled with visions of a life eternally altered, but as the reality of my diagnosis sunk in, I strove to take my focus off survival rates and recurrence statistics and remain positive amidst an unknown future. With that as my goal, I realized how fortunate I am to have such a supportive family whose love bolstered me in my quest to research and understand every possible nuance of my condition. Personal health literacy became critical early in my journey as I worked to demystify the breast cancer demon, lower my stress levels to boost my immune system, and, most importantly, give me control over the trajectory of my journey. My cancer journey began with the discovery of a lump in my left breast during a <a data-tabindex-counter="1" data-tabindex-value="none" href="https://storymd.com/topic/RA8n9meuZd-breast-exam" tabindex="-1">routine self-exam</a>. Despite hoping it was benign, a diagnostic <a data-tabindex-counter="1" data-tabindex-value="none" href="https://storymd.com/topic/lAW4b9GcEo-mammogram" tabindex="-1">mammogram</a> and <a data-tabindex-counter="1" data-tabindex-value="none" href="https://storymd.com/topic/rA3KlXZCNA-breast-ultrasound" tabindex="-1">ultrasound</a> administered at NYU Langone revealed a breast cancer diagnosis. <figure><img alt="" height="482" src="https://cdn.storymd.com/optimized/PqELLKlc1d/original.jpg" width="253" /> <figcaption>Susan's mammogram. Source: Alexander Tsiaras</figcaption> </figure> Post imaging, I met with the radiologist who delivered the bad news. Her lack of bedside manner echoed a common complaint experienced by many; that is, a healthcare professional exhibiting a demeanor that leaves the patient with indelible anxiety. My exchange with the radiologist served to worsen the impact of my diagnosis. She entered the exam room, delivered the news with dispassionate pity, and shared some dire warnings not to do any research online as it might lead me down a misinformation spiral. I imagined she might provide some educational take-home materials, but I left that appointment empty-handed and craving some empathetic personalized guidance. Ironically, my husband is the founder and CEO of a digital health platform, <a data-tabindex-counter="1" data-tabindex-value="none" href="https://storymd.com/" tabindex="-1">StoryMD</a>, and, coincidentally, he has been working on an alpha version of a transformative digital health program on cancer journeys. Despite my radiologist’s warnings, it became my go-to for all I needed to know about my cancer diagnosis and informing me of the treatment steps that would follow through each new phase of my journey. My initial biopsy diagnosis revealed a frustrating disparity between healthcare protocols and everyday patient needs. Following typical protocol, my NYU Langone biopsy pathology was sent to my primary care doctor, who, unfortunately, misinterpreted my pathology report. I now had two patient portals: one for my primary care doctor, and one for NYU Langone, neither of which spoke to one another. Soon, I would have a third portal as I chose to have surgery and treatment at Memorial Sloan Kettering (MSK). This all resulted in my critical health data being splintered and siloed, leaving me to cobble together and interpret my pathology information to understand the specifics of my diagnosis and the next steps. Fortunately, I did not need to cobble as I turned to my <a data-tabindex-counter="1" data-tabindex-value="none" href="https://about.storymd.com/storymd-health" tabindex="-1">+StoryMD Health Personal Health Journey (PHJ) </a>portal for support. I entered my diagnostic reports into my PHJ, and it automatically translated the indecipherable jargon into a personalized, visual story that I could understand and act on. My next step was to meet with my MSK surgeon, Dr. Virgilio Sacchini. The meeting with Dr. Sacchini, a renowned researcher and breast cancer surgeon, confirmed the NYU Langone <a data-tabindex-counter="1" data-tabindex-value="none" href="https://storymd.com/topic/ZoByQpgCjA-breast-biopsy" tabindex="-1">biopsy</a> pathology report, which revealed a less aggressive form of breast cancer but indicated the necessity of a mastectomy due to the tumor size. Having a mastectomy was something you always imagined only happened to other women — not you. My breasts withhold a lifetime of memories: their development at the onset of puberty, soon realizing how they attracted attention from boys (and, later in life, from men), and breastfeeding my infant son. As is the case with most women, my breasts are bound to my identity, yet one was soon to be both clinically and emotionally removed. I was devastated by this news. Now receiving my treatment at MSK — the Four Seasons of all cancer care institutions — I am surprised to note that even MSK lacks a cohesive patient health literacy program, relying instead on disparate information sources: a glimpse of the doctor’s screen here, a PDF there, a hardbound binder to instruct at-home care, and a patient portal that provides you with medical hieroglyphics, forcing you to do more cobbling. The MSK website offers general overviews but lacks personalized information and guidance. I am fortunate to have my +StoryMD Health PHJ portal to turn to as I am never left wondering what my health data means. My PHJ is there to map critical educational information about my clinical data, allowing me to add behavioral notations and weave this information into a personal health story. As an aside, I do not intend to single out MSK or NYU Langone in their lack of a patient health literacy initiative; it is apparent that prioritizing a uniform, streamlined, and personalized patient health literacy program is not something healthcare institutions currently stress. My <a data-tabindex-counter="1" data-tabindex-value="none" href="https://storymd.com/journal/j44bxe8inj-breast-cancer-surgery-and-recovery/page/dl2xvv1e2zpk-questions-to-ask-about-breast-surgery-choices" tabindex="-1">pre-surgery appointment </a>with Dr. Sacchini instilled confidence and positivity. Noting that my <a data-tabindex-counter="1" data-tabindex-value="none" href="https://storymd.com/journal/qjonqn90nm-sentinel-lymph-node-biopsy" tabindex="-1">sentinel node biopsy</a> was accurate and that my nodes were clear, Dr. Sacchini prescribed an MRI with contrast to map my nodes. Happily, the MRI confirmed that my lymph nodes were clear, granting me a reassuring nod as I prepared for surgery! While my husband and I were impressed with Dr. Sacchini’s surgical excellence, we were once more struck by the absence of educational guidance to aid our understanding of my impending surgery. These appointments are pivotal opportunities to enhance patient <a data-tabindex-counter="1" data-tabindex-value="none" href="https://storymd.com/journal/qj358rb0am-health-literacy" tabindex="-1">health literacy</a> with personalized, informative dialogue. We left this appointment without a complete understanding of what lay ahead, so we turned to StoryMD to interpret Dr. Sacchini’s feedback, and by the time we met with his nurse the following week, we were well versed in the next steps. This meeting further underscored the fragmented delivery of information, with sparse pre- and post-surgery care details provided in a hardcopy binder. As I was being prepped for my <a data-tabindex-counter="1" data-tabindex-value="none" href="https://storymd.com/journal/j44bxe8inj-breast-cancer-surgery-and-recovery/page/57lpyt96kzo-mastectomylumpectomy" tabindex="-1">mastectomy</a>, I faced an unexpected question from my nurse: whether I wanted a <a data-tabindex-counter="1" data-tabindex-value="none" href="https://storymd.com/journal/mqlnbq3fej-ultimate-guide-to-your-breast-cancer-journey/page/a6kogf3yx9p-nerve-blocker-for-surgery" tabindex="-1">nerve blocker</a> administered before my surgery. With only minutes to decide, I felt undue pressure to make an on-the-spot critical decision. In the time we had, we quizzed the nurse on the pros and cons of this medication, and she shared potential benefits like reducing pain post-surgery, but also the highly significant risks. My husband quickly looked up the nerve blocker information on StoryMD, and we decided to opt for the blocker; thankfully, I did not experience any of the possible downsides. A few weeks after my surgery, I received the tumor pathology via my patient portal, and amidst the clinical jargon, I sensed the news was not good. I noticed discrepancies between the report and the original biopsy findings, unleashing anxiety that could not be tamed until I could discuss the situation with my surgeon a week later. This was the moment that I began to experience Pavlovian anxiety attacks upon receiving alerts from MSK to check my portal for lab and test results. Receiving concerning data without explanation or medical guidance proved to be extremely stressful. During the weeks waiting for my tumor pathology results, I inputted all the pre-and post-surgical data I had received via my MSK <a data-tabindex-counter="1" data-tabindex-value="none" href="https://storymd.com/journal/bmp88k3i6j-personal-health-records" tabindex="-1">patient portal</a> into my +StoryMD Health portal. My data was auto-imported via StoryMD’s AI program, which explained my many lab results and allowed me to make notes in my digital diary. While waiting for my follow-up visit with Dr. Sacchini, I benefited from the digital hand-holding I was receiving from StoryMD; it has been my steadfast cancer journey companion, providing step-by-step guidance and translating complex medical jargon from various patient portals into understandable insights. As my health diary and medical record aggregator, StoryMD has empowered me with a sense of control and eased my stress. Unlike my multiple patient portals that do not speak to one another and primarily focus on clinical and administrative data to the benefit of the healthcare system, the +StoryMD Health Patient Health Journey has allowed me to sequence my story into a manageable narrative, automatically incorporating clinical and wearable data, emotional notes, and photos. This empowerment was particularly crucial during my post-surgery phase of treatment. Following my successful surgery, my post-surgery appointment with Dr. Sacchini brought relief as my lymph nodes and tumor margins were clear. However, pathology findings were deferred to my oncologist, whom I had yet to meet. Meanwhile, I diligently performed arm and shoulder stretching <a data-tabindex-counter="1" data-tabindex-value="none" href="https://storymd.com/journal/mqlnbq3fej-ultimate-guide-to-your-breast-cancer-journey/page/ery332fxvyer-exercises-post-surgery" tabindex="-1">exercises</a> to regain motion impaired by surgery, charting progress with colorful stickies. <figure><img alt="" height="583" src="https://cdn.storymd.com/optimized/voJXX22hvq/original.jpg" width="437" /> <figcaption>Susan's stickies for her post-mastectomy exercises Source: Alexander Tsiaras</figcaption> </figure> Three weeks later, I bid farewell to the stickies as my range of motion returned. However, the gravity of my situation became apparent at my initial oncology appointment, where the pathology report revealed a more aggressive cancer type than anticipated, necessitating chemotherapy despite my earlier belief that hormone pills might suffice. During my consultation with my MSK oncologist, Dr. Nour Abuhadra, she revealed that I had triple-negative breast cancer and a 3.9 cm tumor, leaving my husband and me in shock as she was the first to share this news with us. Dr. Abuhadra, empathetic and warm, presented three chemotherapy protocols, strongly recommending the most intensive one (warmly referred to as the “Red Devil”). On a piece of paper, Dr. Abuhadra noted our options, which read more like a series of hieroglyphic acronyms. <figure><img alt="" height="533" src="https://cdn.storymd.com/optimized/kqrWjpWtZA/original.jpg" width="700" /> <figcaption>Susan's treatment options for chemotherapy laid out on paper by her doctor. Source: Alexander Tsiaras</figcaption> </figure> We deferred our decision until we met as a family to compare and contrast the pros and cons of each option. We mapped the three options using StoryMD as our reference, translating and analyzing them, and we discovered a severe lack of data on post-chemotherapy quality of life results, particularly for women in my age bracket (late 60s). This was disappointing as I was highly focused, not just on surviving, but on thriving after my treatments were completed. <figure><img alt="" height="500" src="https://cdn.storymd.com/optimized/VAzXKwKcMd/original.jpg" width="800" /> <figcaption>Whiteboarding Susan's chemo options via StoryMD Source: Alexander Tsiaras</figcaption> </figure> A great source of apprehension and dread was the thought that my <a data-tabindex-counter="1" data-tabindex-value="none" href="https://storymd.com/journal/jn7kg6qhrm-chemo-regimens-to-treat-breast-cancer" tabindex="-1">chemo treatments</a> would cause me to lose my hair. Some people think that this is a concern borne out of vanity and the last thing a woman should worry about when diagnosed with breast cancer, but this judgment does not consider how a woman’s hair is inextricably linked to her identity. For me, the possibility of losing my hair triggered a childhood trauma: I did not have a real head of hair until I was three years old and had to endure strangers commenting on what a cute little boy I was despite my insistence on wearing frilly dresses to compensate for the lack of hair! <figure><img alt="" height="465" src="https://cdn.storymd.com/optimized/ZoBy0O4hvA/original.jpg" width="358" /> <figcaption>Four-year-old Susan with a bow in her hair. Source: Alexander Tsiaras</figcaption> </figure> This was incredibly traumatic for me and my identity; the day I finally had enough hair to wear a bow or barrette was a significant rite of passage for me. So, the thought of once more not having hair brought back the sadness, fear, and anger I experienced as a three-year-old girl fighting to have people acknowledge my feminine identity. When I found out that my insurance would cover the cost of scalp cooling (a process in which you wear a <a data-tabindex-counter="1" data-tabindex-value="none" href="https://storymd.com/journal/vj6koo3uzm-chemotherapy-to-treat-cancer/page/435k82f7kke-scalp-cooling" tabindex="-1">cold cap</a> that freezes your scalp during chemo treatments to prevent the chemo from affecting your hair follicles, thereby helping to preserve your hair), I was filled with joy. Happily, it’s working. I have retained most of my hair after eight chemo treatments! <figure><img alt="" height="510" src="https://cdn.storymd.com/optimized/RoegZebiaq/original.jpg" width="382" /> <figcaption>Susan undergoing scalp freezing for her hair. Source: Alexander Tsiaras</figcaption> </figure> Knowing that I had clear tumor margins and lymph nodes, and that I prioritized the quality of life I would potentially experience post-treatment, I opted for the least aggressive chemo regimen. This decision marked a pivotal moment of empowerment and self-care in my journey. During chemotherapy, societal norms, such as not discussing bodily functions, all dissolve. You routinely find yourself tracking and discussing your bowel movements and vomiting episodes with anyone who will listen. <figure><img alt="" height="500" src="https://cdn.storymd.com/optimized/Kq2Zmy8TLq/original.jpg" width="1217" /> <figcaption>Susan's entries for nausea and fatigue in +StoryMD Health. Source: Alexander Tsiaras</figcaption> </figure> However, I found some simple coping mechanisms that helped to keep my daily quality of life manageable as I went through my chemo treatments. We set up a new household rule that we only watch comedy shows at night to ensure that I get my daily deep-belly laugh (the best medicine ever!), and I can’t begin to describe how comforting and heartfelt it was when my 23-year-old son, upon noting I was eating a dish of blueberries every day, read that blueberries are filled with antioxidants and gifted me a giant stuffed blueberry mascot who was quickly named Mr. Blueberry. <figure><img alt="" height="500" src="https://cdn.storymd.com/optimized/8ojW2ebtLd/original.jpg" width="375" /> <figcaption>Mr. Blueberry sitting on Susan's husband's webby. Source: Alexander Tsiaras</figcaption> </figure> I kiss Mr. Blueberry every morning and night for good luck; that is when I can steal him back from Kookla, our sweet goldendoodle, who insists he is her new chew toy! <figure><img alt="" height="500" src="https://cdn.storymd.com/optimized/aAR907ptvq/original.jpg" width="375" /> <figcaption>Kookla and Mr. Blueberry. Source: Alexander Tsiaras</figcaption> </figure> Nothing compares to the healing power of human touch, however, especially having loved ones surround you with hugs and affection during your journey. Beyond my family’s affections, I've been fortunate to receive warmth and goodwill from many of my MSK healthcare providers, particularly the nurses, whose kind gestures mean so much to me. <figure><img alt="" height="478" src="https://cdn.storymd.com/optimized/PApQ0gbhvo/original.png" width="700" /> <figcaption>A positive review of one of Susan's nurses in +StoryMD Health. Source: Alexander Tsiaras</figcaption> </figure> It is difficult for me to describe how special I feel when in the care of my oncologist, Dr. Abuhadra; she takes the time to get to know you as a unique human being with individual needs and priorities, not just an anonymous patient. What is most remarkable about Dr Abuhadra is that she is a big hugger! She greets my husband and me with a huge and sincere hug every time we meet and then again as we leave her office. <figure><img alt="" height="545" src="https://cdn.storymd.com/optimized/KAM9WYDsLA/original.jpg" width="700" /> <figcaption>A positive doctor's review in +StoryMD Health. Source: Alexander Tsiaras</figcaption> </figure> This human touch from your doctor is both unusual and incredibly healing. Patient engagement and empowerment thrive when accompanied by empathetic expert care. This is exemplified by Dr. Abuhadra's approach, which has significantly contributed to managing my stress, fostering my resilience, and empowering me to move forward positively in my health journey. It is so important to have healthcare providers who take the time to weave a personalized patient narrative into their care. Having just completed my eight rounds of chemo, the responsibility of driving my health journey remains paramount. With the patient empowerment gained from my MSK team's care and the +StoryMD Health Personal Health Journey platform, I now have the story of me, not just the statistics of me, which serve as the bedrock of all my future health journeys. I'm equipped with the knowledge and confidence to continue to be the driver of my journeys — not just a passenger. As I embark on my post-treatment healing process, I reflect on four key elements that have been so crucial to the successful navigation of my breast cancer journey: 1) confidence in my healthcare team; 2) emotional and loving support from family and friends; 3) personal fortitude and positivity; and 4) access to technology that bolsters my personalized health literacy. I look forward to sharing Part 2 of this article, which visually compares my institutional patient portals to my +StoryMD Health Personal Health Journey. <h2>More on Breast Cancer</h2><ul><li><a href="https://soulivity.storymd.com/journal/mqlnbq3fej-ultimate-guide-to-your-breast-cancer-journey" target="_blank">The Ultimate Guide to Your Breast Cancer Journey</a></li><li><a href="https://soulivity.storymd.com/journal/jk7g9equbm-breast-cancer-screening" target="_blank">Breast Cancer Screening: Mammography and Other Screening Tests</a></li><li><a href="https://soulivity.storymd.com/journal/bmpelee06j-basic-information-about-breast-cancer" target="_blank">Basic Information About Breast Cancer: Types, Risk Factors, Treatment</a></li></ul>

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Susan's Breast Cancer Journey Part 1: +StoryMD Health's Technology Empowers Her Personalized Health Journey

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