In the United States, ductal carcinoma in situ (DCIS) is often referred to as a “good” type of breast cancer because it’s stage zero, non-invasive, and has a nearly 100% survival rate after 10 years.
However, as I learned on my DCIS patient advocacy journey, navigating a best-case scenario breast cancer diagnosis, even when you have a background in vocal empowerment, is still complicated.
Despite its treatability, a DCIS breast cancer diagnosis can significantly and negatively impact a woman’s well-being. With recommended treatment options that often include surgery, radiation, endocrine therapy, and in the U.S., preventative bilateral mastectomy, a DCIS diagnosis can involve complex decisions.
Below, I share key moments from my DCIS journey. I hope that my experiences can empower people to navigate a DCIS diagnosis and be an empowered DCIS patient advocate.
I had my first mammogram in Las Vegas, where I live, in the fall of 2022. With zero family history of breast or any other female cancers, I didn’t think much of it.
I received my results by mail two weeks after the procedure. In my report, I learned I had dense breasts and there was an area of concern in the left breast that warranted an ultrasound for additional imaging.
During my mammogram, my tech said I would almost undoubtedly need an ultrasound. She told me that at their diagnostic center, almost every woman receives this recommendation after her first mammogram since there are no baseline images for comparison. So, I was not alarmed.
When I called to schedule my ultrasound, I was told it would take over 90 days to get into the same facility. One of my family members had a long-time friendship with a radiologist at an imaging center in Los Angeles. I went there, instead, to repeat my mammogram and receive the ultrasound.
Nothing suspicious was observed. I learned that my breasts were not only very dense but also fibrocystic. But there was nothing worrisome spotted, so I moved on.
Fast forward two years later. I returned to the same L.A. imaging center for a mammogram and ultrasound. I appreciated that at this facility I was able to review my results immediately after my imaging and avoid the longer wait times back home.
This time, the radiologist I met with found a tiny area of architectural distortion in the left breast. He ordered a second round of same-day mammography to try to see more clearly since nothing was palpable or detectable on the ultrasound. He suspected what he observed was a radial scar, which is usually benign, and recommended an MRI.
The next day I drove from one side of L.A. to the other to meet with an ENT and top vocal cord surgeon, Dr. Benjamin Rafii. I’d been experiencing increased hoarseness and vocal breaking over the last two years. I was losing confidence that I would be able to heal myself when nothing I had tried up until this point made much of a difference.
After an extensive exam and direct laryngoscopy, I was diagnosed with a vocal cord polyp on my left vocal cord. Given my profession as a speaker and that I’d already been in and out of voice therapy for a year, Dr. Rafii recommended I have surgery within the next 90 days to avoid the possibility of long-term vocal cord damage from overuse.
Afterward, I would need at least a week of full vocal rest. Plus, I would have to take 4-6 weeks off from seeing clients on Zoom and avoid projection (meaning speaking engagements) for at least 90 days.
I’d just signed a sizable government contract to lead a leadership development program. I was going into enrollment for my two business mastermind groups, and I had several upcoming speaking gigs. I thought I was going to combust.
I broke down in tears, sharing that the last two days had been rough. I mentioned that, in addition to this procedure, I also needed to follow up on a suspicious mammogram. I explained that my father had died at the start of the year and I was still deep in grief. Oh yes, and so was my husband. He was leaving home, as soon as I returned to Las Vegas, for his own father’s funeral.
Poor Dr. Rafii. I was an overflowing fountain of emotions!
He listened. He empathized. He assured me that all of this was navigable, and I believed him. Recovery would be relatively simple, as long as I followed his voice usage guidelines. And while he didn’t want me to wait too long, he recommended I complete my follow-up imaging before making any plans for vocal cord surgery. If I were to need any breast surgeries, I would not want a breathing tube in my throat for at least 90 days after a vocal cord procedure.
When I came back home to Las Vegas, and with my husband away, I started a dangerous affair with ChatGPT. Some days I fixated on my vocal cords. Most days, though, I looked up all the possibilities at the intersection of architectural distortion and radial scar.
Lots of benign conditions like sclerosing adenosis and hyperplasia came up. So did much more aggressive, invasive cancers. I also stumbled upon the words, “ductal carcinoma in situ” (or DCIS).
While, at this stage, I was naturally hoping for a benign radial scar, DCIS felt like the best backup prayer.
Scheduling my MRI out of state was nothing short of a nightmare. Because I had paid out of pocket for the L.A. mammogram and ultrasound, my insurance company didn’t understand who was ordering the follow-up testing or why it was warranted. If my primary care provider were not so exceptional and a mom friend at my daughter’s school, what took three weeks would likely have taken three months.
During this time, I felt like I was harboring dirty secrets from my clients. I didn’t know if anything was wrong with my left breast, so I didn’t want to speak about it. I didn’t know when I was going to schedule my vocal cord surgery, so I didn’t want to bring that up either. I also knew I would work through whatever the diagnoses were, sans the required vocal rest, so I decided to up my personal coaching, self-care, yoga, and somatic wellness, and I bulldozed ahead.
In one of my own coaching sessions, I shared how the mental Jenga I was playing with my summer schedule was one of the hardest parts of this whole ordeal. My coach was incredible about helping me make my best-case plan and line up contingencies. In the course of our conversation, I mentioned where I was going for my MRI. It was the same place where she had her routine imaging. She offered to take me to my MRI appointment, which was fantastic.
It felt good to have a companion who cared about me but was less emotionally invested than a family member. I have a tendency to over-function with loved ones during my difficult times rather than allow them to take care of me. I received my MRI report the next day after the procedure, once I was back home. It was painful to read.
I had a 17 x 13 mm area of irregular/spiculated focal enhancement that was assigned a BI-RADS score of 4, suspicious for malignancy. Plus, a 5.9 mm enhancing nodule was found in the right breast, and that also needed follow-up.
By the time a radiologist from the first imaging center who had completed my mammogram and ultrasound called me, I had stress-read my MRI report at least three dozen times. I also transitioned to researching “best cold caps” for the chemo I assumed I’d need and “how to protect vocal cords during radiation.”
The radiologist shared his prediction, which, thankfully, was inaccurate. He felt confident my breast was likely harboring an intermediate-grade invasive cancer. I knew I needed to find an oncologist to take the reigns. I wanted to stay in L.A. and ideally within the healthcare system where all of my imaging had been completed.
I also knew that it was my right and responsibility to find someone who, like my surgeon four years earlier when I had thyroid cancer, would integrate emotionally intelligent, patient-centered care with outstanding clinical practice.
My research led me to Dr. Janie Grumley, an oncological surgeon and head of the Margie Petersen Breast Center at Providence St. John’s. I reached out to Dr. Grumley because she is renowned as an oncological surgeon and also highly regarded for her exceptional bedside manner and communication skills. She has hundreds of reviews from patients saying she helped them to personalize their treatment plans based on their priorities, and she ensured they received only medically warranted interventions. She has been quoted in numerous articles and is one of the highest-volume breast cancer surgeons in the country. She also sees patients with benign breast disease, so no matter what was going on with me, she could likely help.
My body had been diagnosed with papillary thyroid cancer early on in the 2020 pandemic. During my thyroid cancer journey, my first serious diagnosis, I learned how important it is to clarify your health values and goals for your treatment. I had initially consulted with a thyroid surgeon whose primary goal was to eliminate any chance of thyroid cancer recurrence. Therefore, he recommended I remove my entire thyroid. While, as I began to realize, my primary goals were to avoid overtreatment and pair exceptional medical care with an exceptional patient experience. I was leaning toward a hemithyroidectomy. There were fewer risks, and it would leave me with partial thyroid function. More than anything, I wanted a role in decision-making about my body, so I chose a different surgeon.
Shared decision making between patients and their medical providers leads to better health outcomes, because patients are more likely to understand their options and follow through on recommendations.
The night I spoke with the radiologist about my MRI results, I sent Dr. Grumley a pretty emotional email. She called me within fifteen minutes and left me with the first sense of peace I’d experienced in over a month.
Before we got off the call, Dr. Grumley said “Alexia,” having taken the time to notice and honor that the name I go by is not my legal name. Incidentally, almost no provider does this.
She went on to say, “You can’t diagnose cancer from an MRI or any imaging. If it’s a radial scar, it would look like an invasive cancer on an MRI. So there is no reason to believe at this point this is anything different than what was initially observed.”
Because I was navigating back-to-back speaking engagements and leading a three-day vocal empowerment certification, it took another three weeks to go back to L.A. for my two breast biopsies.
The first, at the Margie Petersen Breast Center, was for the right breast. I was told it was likely a fibroadenoma, which I learned the next day it was. Because it showed up clearly on an ultrasound, I had an ultrasound-guided biopsy which was pretty painless. Everything about my first Margie Petersen experience was top-notch. From communication with front-office staff and my biopsy team to the gentleness of the mammogram tech who ensured my biopsy clip was in the right place, I knew I’d chosen well.
The area of concern in my left breast still could not be detected in an ultrasound. So, the next day, I was sent to a different facility for an MRI-guided, vacuum-assisted core needle breast biopsy. The radiologist conducting the biopsy told me that given I would be in an MRI machine and the spot he had to access was in the inner and upper quadrant of my breast, the pain might be substantial.
He was not wrong! I had a difficult childbirth, and this pain matched it, despite the Lidocaine. Afterward, my biopsy nurse had a challenging time stopping the bleeding. I also noticed she wasn’t compressing my left breast, which is important to prevent a hematoma. My mom, a retired nurse, had accompanied me to L.A. for this trip and stressed the importance of post-biopsy breast compression. Within an hour, my left breast looked like another angry breast was developing inside of it. It was also as hard as a rock.
A breast hematoma is a localized collection of blood within the breast tissue that occurs when blood vessels are damaged, allowing blood to leak into the surrounding area. While most will resolve themselves within a few weeks to a few months, they can lead to bleeding complications, bacterial infection, permanent scarring, and chronic breast pain. In extreme cases, they can lead to sepsis, which can be fatal.
Despite my increasing breast pain, I harnessed the vocal empowerment skills that are the foundation of the work we do at Step into Your Moxie. And I laid track for my future DCIS patient advocacy. I told my nurse I thought she needed to call for assistance. I was still bleeding. I needed breast compression. Plus, I was starting to feel faint.
My request was denied. My nurse shared that the facility was short-staffed and there was nobody for her to call in to help. I’d learn later that this was untrue. The part about not having anybody to call, anyway. Like so many healthcare employees, this nurse likely wanted to avoid her staff and superiors potentially looking down on her or being branded a troublemaker. This was understandable, but it also put my well-being at risk.
Fortunately, around this time, the bleeding finally stopped. I got up to put on my medical gown and nearly passed out as I stood up to walk. My nurse put her arm around me and escorted me up the stairs and past my mom to get a mammogram to check the placement of the clip.
By this point, my breast was close to two times its usual size, and I told her I didn’t think I would survive putting my breast into a mammogram machine. She told me I probably had a hematoma and not to worry. She also handed me an overdue ice pack.
The mammogram tech was waiting for me, and her first words were, “You’re late.” She took my ice pack and threw it on top of a trash can the way my daughter used to throw a juice box when she was in diapers and having a tantrum. It was gross on multiple levels. And as I stumbled into the mammogram machine, she told me to stop wobbling. She then shoved the machine down onto my breast. As I screamed, “I think I have a hematoma,” she told me, “I can see that. Don’t make this harder than it needs to be.”
As I stumbled out of the mammogram room, dizzy and writhing in pain, another nurse found me. She ushered me into an isolated room and sprung into action. I don’t remember the exact sequence of events, but my biopsy nurse returned. My mother was brought up to see me. Both breasts were bound with an ace bandage to prevent additional swelling, and additional ice and extra-strength Tylenol were given.
At some point, the executive director of the center was brought in. She consulted with the radiologist who performed the procedure and Dr. Grumley. I had around-the-clock care for several hours until the internal bleeding stopped and swelling leveled off. My mom and I managed to get on a plane back to Las Vegas at the end of the day, and I began the wait for pathology results.
Back home, I sent an email, several actually, detailing my experiences at the MRI center to the executive director I’d met with. I included a few simple suggestions that might have prevented the negative sequence of events I experienced and requested a follow-up conversation.
While a hematoma is a known and relatively common complication from an MRI-guided vacuum-assisted core needle breast biopsy, there were several communication and patient safety hiccups I wanted to address. I’d never know if the hematoma was caused by the procedure or by the lack of breast compression after. Most adverse medical events (AMEs) are caused by a series of medical errors, some systemic and some individual. However, it was important to me to ensure other people didn’t experience what I did—particularly with the unprofessional (and downright nasty!) mammogram tech.
I know from our Step into Your Moxie healthcare work that patient safety incidents increase when staff are forced to work overtime and when facilities are short-staffed. Out of curiosity, I checked the facility’s hiring page and discovered they were currently looking for more mammogram technicians. I was not surprised.
It was disappointing not to hear back from the executive director. She’d been warm and seemed genuinely interested in my well-being when she spent time with me. However, it was also an important lesson for my future DCIS patient advocacy. In healthcare, many providers are either disinterested in patient feedback or want to safeguard themselves from potential litigation and strive not to engage once patients have left their facilities.
It’s not wildly different than when non-healthcare clients tell me they don’t want to elicit too much employee or client feedback if they know they can’t address it. To me, this sounds as ridiculous as saying, “I don’t want to check the weather before leaving home because I’ve already committed to wearing flip-flops, so it doesn’t matter if there’s an impending snowstorm.” Ignorance will not safeguard you from hypothermia or from causing harm to employees, clients, or patients.
Forty-eight hours after the left breast biopsy, I received my second round of pathology results. My hoped-for radial scar was actually a complex sclerosing lesion, given its slightly larger size, and… it was benign!
Before I broke out into happy dancing, I also got to the part of the report that said there was atypical ductal hyperplasia (ADH) at the margins. A surgical excision and further testing were necessary to ensure it didn’t meet the conditions for a DCIS diagnosis.
There were those four letters again. DCIS. Maybe I said my backup prayer a few too many times.
When Dr. Grumley called to discuss the results, I believe she said there was an approximately 25-30% chance of an upgrade to DCIS. I was eager to have the recommended excisional biopsy as soon as possible and be done. I was also grateful that it would be an outpatient medical procedure in the hospital where I would have anesthesia.
Unfortunately, given the size of the hematoma, it was unlikely I’d be ready for surgery for at least a month. Meanwhile, Dr. Grumley could barely understand me on the phone as my hoarseness from the vocal cord polyp was progressing. She felt that I should go ahead with the vocal cord polyp surgery and that we could wait 90 days for the breast procedure. When it was time, she would perform the excision with a mask rather than a breathing tube. However, she wanted to ensure that if she needed to use a breathing tube for any reason she could.
So, that’s exactly what I did. I committed the next 90 days to my vocal health. Surgery. Vocal rest. Then vocal therapy and daily vocal warm-ups. I eased back into seeing clients and did a few in-person speaking engagements where I didn’t have to project.
I barely thought about my breasts, especially after the breast hematoma healed. I probably took a few too many supplements that I read might have a positive effect on breast health. I also applied copious amounts of organic, cold-pressed, hexane-free castor oil to my breasts to relieve cyclical breast pain, hoping it might also reduce my ADH. But my mental health during this period was pretty great.
After navigating my vocal cord surgery and rehabilitation, I felt peaceful about going into surgery and having the excisional biopsy.
Everybody at Providence St. John’s was warm and professional. My mom used to be a nurse at the hospital, and I felt her presence with me even though I flew out by myself for this surgery. There is no greater feeling than hearing you have the best breast surgeon on earth before you go into surgery. And I heard that, at least half a dozen times, from the St. John’s staff.
Three days later, after coming home from an overnight stay with a family member post-surgery, Dr. Grumley called to tell me that low-grade, hormone receptor-positive DCIS was found at the margin of my lesion. My next step should be a partial mastectomy, a follow-up surgery that was essentially the same thing I’d just had to remove more cells at the margin to ensure no cancer was left behind.
Plus, Dr. Grumley would send my pathology to a company, PreludeDx™, for the DCISionRT® test. It would determine the likelihood of recurrence with or without radiation. This would guide my treatment plan.
I was grateful that less than two hours after I received this call, I had a therapy session scheduled. I think everybody navigating a possible cancer or chronic illness diagnosis needs therapy. Given that my surgery was on a Tuesday, I predicted my pathology would come back on a Friday, and it did.
In the three days before my pathology came back and I received the call from Dr. Grumley, I had a sense that the ADH was going to be upgraded to DCIS. I’d recently read a book, Snowball in a Blizzard: A Physician’s Notes on Uncertainty in Medicine. The author, Dr. Steven Hatch, discusses research that shows questionable pathology determinations are more likely to be upgraded when conducted on Fridays.
I also just “had a feeling.” In the months between my vocal cord surgery and my excisional biopsy, I created the space to tend to the well-being of my voice and also to the rest of my body. I engaged in regular meditation, breathwork, and EFT. And except in the one to two weeks after surgeries where I had to limit physical activities, I had a yoga routine. Creating this kind of space to be present in my body made it easier to connect to my intuition. And my intuition was saying, “You didn’t have the capacity for this diagnosis after the hematoma. Now you do, so be prepared.”
There is no way to know if waiting a little over three months from the time of the MRI-guided biopsy led to the ADH developing into DCIS. Most likely, I’ve been told and research suggests, it didn’t. Since it was a small spot on the edge of the complex sclerosing lesion, there probably just weren’t enough cells taken from that spot to catch it. However, had my body been harboring an invasive breast cancer, the delay in treatment from the hematoma might have had more negative consequences.
These questions, while they kept me curious during the two weeks I waited for the DCISionRT® test results to come back from PreludeDx™, were not what consumed me.
Instead, during this time, I helped my daughter rehearse for a part in a short film as the child of a mother dying from cancer. Clearly, the universe can have a sense of humor! And while, together, we laugh-cried our way through those daily rehearsals, I began a new round of research focused on how best to treat low-grade DCIS. Radiation showed up in almost every search. My intuition was screaming, “This is not your path, Lex.” However, I worried the DCISionRT® would say something different.
I also did way too much thinking about what led my body to develop DCIS. Sure, I had dense breasts, like nearly half of all premenopausal women. However, I barely drank and never smoked. I exercised regularly and maintained an ideal weight. I followed a Mediterranean diet. And while I had my one and only child at 33, young in my opinion but in the “older than ideal zone” when it comes to lifetime breast cancer risk, I had never had hormone therapy. Okay, that wasn’t exactly true. I spent one year on natural progesterone to treat post-partum depression. But… I’d spent less than five years on birth control pills, far less than most women of my generation.
More importantly, I had zero family history of any female cancers. I did not have the BRCA1 or BRCA2 genes or any of the approximately half a dozen breast cancer genes or variants tested when I joined the WISDOM Study.
I had moments where I tricked myself into thinking that too much preventative testing was the problem. If mammograms were still 2D versus 3D, this low-grade cancer likely would have never been found. And if I were in Las Vegas, after nothing showed up on an ultrasound, it’s unlikely an MRI would have been ordered. Maybe, if I’d stayed in my own city for testing, all of this could have been avoided.
Other days, I blamed adverse childhood experiences (ACEs) like being the child of divorce and experiencing sexual abuse.
Maybe it was the high levels of pollutants in the ocean near where I grew up or the fluoride pills that were the rage in the 1980s.
At other times, I blamed myself.
Why did I write a play in college about a woman who got breast cancer in her left breast? Did I have to pick fuschia as one of my business brand colors? Had I been willing breast cancer to pick me through these seemingly innocuous choices?
I am somebody who wears her healthiness in mind, body, and spirit (outside of times of health diagnoses) as a badge of honor. DCIS on the heals of thyroid cancer and a vocal cord polyp chipped away at the narrative that my positive life choices will directly impact (or rather eliminate) negative health outcomes.
Of course, as Dr. Grumley and any provider with a pulse could tell me, there was no answer to why my body developed breast cancer.
“You didn’t do anything wrong, Alexia,” Dr. Grumley told me during our first meeting. “It sounds like you’ve done everything right. Following recommended medical screenings means things get picked up early, and this gives you choices, and that’s something to celebrate.” And I believe that. Most of the time. Sometimes, cancer just happens.
I also believe that you don’t engage in positive physical, mental, somatic, and spiritual health practices to eliminate the hard stuff. Okay, to be fair, for a long time I have believed or at least hoped for that, but I realize now that living one’s healthiest life isn’t for this reason.
Rather, you foster health-affirming behaviors and habits so that when the hard stuff shows up, you have more tools to help you navigate.
While DCIS is a stage zero, non-invasive cancer, low-grade DCIS is different than intermediate or high-grade DCIS. Many recommendations have been made with intermediate and high-grade DCIS in mind. Furthermore, over the last two years, leading breast cancer experts have had differing opinions on the best way to treat DCIS. The month I had my second breast surgery, new research showed that “active surveillance,” simply waiting and watching, could be an option for low-grade DCIS. I’ve linked to this and other research I found helpful in my DCIS patient advocacy journey at the end of my story.
As I’ve shared, one of my priorities since my thyroid cancer diagnosis has been my desire to avoid overtreatment. That priority only intensified after my low-grade DCIS diagnosis. This was one of the reasons why I chose Dr. Grumley as my oncological surgeon. To quote her in an article I found after my MRI results came back, I don’t want to “overtreat a disease that is not necessarily life-threatening.”
In the U.S., there is no shortage of providers who recommend a bilateral mastectomy, radiation, and/or endocrine therapy (which is usually up to 5 years of Tamoxifen) for all premenopausal women whose bodies are diagnosed with DCIS.
However, each of these interventions comes with potential side effects. For example, radiation and endocrine therapy can contribute to the development of more aggressive cancers in the future. Having already had thyroid cancer and with my wonky vocal health history, radiation so close to my throat made me especially uneasy.
The more time I spent online researching, the more I thought that a bilateral mastectomy might be the way to go. This had never come up as a recommendation from Dr. Grumley. And I didn’t want to say goodbye to breasts that, since the moment they sprouted on the later side of puberty, I’d always had a great relationship with. But I already had major scanxiety. I couldn’t imagine spending the rest of my life worrying about my breast health.
Then, I found a Women’s Health article discussing research that showed a bilateral mastectomy may not boost breast cancer survival. It quoted Dr. Grumley who said, “A lot of patients feel like they should have a bigger operation, but we’ve never seen a survival benefit from a bilateral mastectomy. Never, ever.”
So, I reminded myself that I was incredibly discerning when I picked Dr. Grumley. Every experience I had with her had exceeded my expectations. And every adjacent healthcare provider I worked with sang her praises. I needed to stay off the internet while I continued to wait for those dang DCISionRT® results and trust her guidance.
Two weeks is not a long time. Except when you’re in the middle of a launch for an in-person event that is scheduled precariously close to when you might need radiation therapy. And you don’t want to tell your clients you might need to take a second short medical sabbatical six months after your last one. Oh yes, and you have a family history of health-related OCD which you’re pretty sure you’ve finally succumbed to. Then, two weeks can feel interminable.
Plus, during this period, the follow-up breast surgery Dr. Grumley had scheduled me for was postponed for three weeks due to the holidays. And then, I learned I might have to change insurers in the new year, which would mean needing to get medical approvals all over again. This would almost certainly delay the surgery further, and I’d be facing a new (potentially higher) deductible after already hitting mine the year before.
I started researching how much I could list my home for. And whether purchasing an Airstream or a yurt, and then taking a couple of years off, might be viable options.
As two weeks post-DCIS diagnosis approached, my hands and feet started to get itchy. I also started to get hot and experience body aches, particularly at night. After a stressful organizational client meeting, I came home and took my temperature. It was 101 degrees. I’m somebody who rarely gets sick. I wasn’t sure whether my body was reacting to the stress or I’d picked up a winter bug. I listened to Shaboozey’s “Good News,” and I prayed, hard, for a sign that everything would be okay.
I woke up the next morning with a pin-prick-like rash on my hands and feet. The first thing I saw on my phone was that Brian Thompson, the CEO of UnitedHealthcare, the parent company of my insurer, had been murdered. These did not feel like good signs!
Several hours later, I did receive my much-desired good news. My *DCISionRT® results showed that over 10 years I had only a 3-5% chance of a DCIS or invasive breast cancer recurrence, respectively, even without clear surgical margins. No treatment, beyond surgery to give me better margins, was recommended.
*As a non-medical provider, I rarely tell anybody diagnosed with DCIS (or any other condition) what they should do. One of the things I unequivocally recommend, however, is getting the DCISionRT® test. It’s a game-changer in DCIS treatment decision-making.
I wanted to celebrate. I had dreamed of this scenario, and it happened. However, my body didn’t get the memo. My fever spiked, and my little rash turned into painful full-body hives. I tested positive for Flu A, but I also exhibited all the signs of Hand, Foot, and Mouth Disease. My nervous system needed a break.
A few days later, several hours after Luigi Mangione was arrested, Dr. Grumley’s office called to say a spot had opened up. I would be having surgery the next week.
Was it my passionate and persuasive DCIS patient advocacy that enabled me to get in for surgery earlier? A more sinister fear about retaliation? I’ll never know, and I’ll forever be grateful.
Fortunately, whatever my body was working through, it resolved before my next surgery.
Despite having two breast surgeries within four weeks, my partial mastectomy was as uncomplicated as the first procedure, sans anesthesia-triggered fecal impaction that hit on Christmas. Thank God my mom is a nurse!
After returning home from L.A., I prepared myself not to receive timely pathology results, given that Christmas was so close. But two days later, I received the best early Christmas present.
No DCIS was detected, and I had delicious, 1.5 cm margins! (Okay, that’s not exactly what pathology said, but that was the gist.)
I don’t entirely feel comfortable calling myself a two-time cancer survivor, even though this is factually accurate. Nor do I feel comfortable bypassing one of the most challenging and ultimately life-charging seasons of my life. Hence why I created this post.
I’m somebody whose life and career have been committed to unapologetic truth-telling. How could I not talk about this?! So, when I think about my health journey, I’m honoring that two seemingly incongruous things can be true.
Just like a person with excellent character can have a lapse in judgment and cause irreparable harm to another. And a person who habitually causes harm to others is deserving of empathy when they are the victim of a crime.
So it is that I can be grateful that all of my diagnoses, including DCIS, have been non-life-threatening, highly treatable, and not had horrendous side effects. And I can (and will!) also honor that they’ve caused a ton of disruption and distress, and they’ve altered my personal and professional life in ways I’m still discovering almost daily.
The future is unpredictable and never guaranteed. When health issues prevent themselves, I want to continue to be an active participant in my care. I want to support other people to be advocates for themselves. I also want to honor my dad’s legacy by making healthcare at least a little bit more tolerable for all of us.
My dad journeyed a hard path for the last approximately twenty years of his life. When I was in college, he was diagnosed with leukemia. Such a diagnosis, even just a year earlier, likely would have required a bone marrow transplant. And even with it, the cancer might have been terminal.
Fortunately, my dad joined one of the first clinical trials for the cancer drug, Gleevec®. Despite the discovery of multiple parathyroid tumors over a decade later, and a complicated recovery from surgery to remove them, leukemia turned out to be the least of his health problems.
Soon after his diagnosis, the parking garage arm at his healthcare facility broke. He was driving through in a convertible when it landed on him. The injuries he suffered led to a lifetime of back problems and chronic pain.
My dad believed surgery could relieve his pain, and he underwent almost yearly spinal fusions for over a decade. He also had multiple hip and knee replacement surgeries. He strived to avoid opioids, so it was hard for him to ever get a reprieve from his pain.
Shortly after my thyroid cancer diagnosis, my dad developed a staph infection. Unbeknownst to him, he had at some point received a spinal stimulator. The metal in the device is what developed the staph. While in the hospital fighting the infection, his body developed sepsis. After several months, he recovered, but my dad was confined to a wheelchair for the rest of his life.
Afterward, my dad also navigated chronic kidney disease and ultimately acute kidney failure, likely exacerbated by the long-term use of Gleevec®. But by far the worst part of his health journey was the late-stage dementia-like symptoms that surfaced during his sepsis hospitalization and as his kidney failure worsened a few years later.
Until my dad could no longer walk, he volunteered every week with cancer patients at his healthcare facility. He did this despite the PTSD he likely experienced whenever he drove into the parking garage. My dad knew how to hold a grudge. Fortunately, he also knew how to find humor in the most devastating situations. He also strived to provide comfort to others who were similarly suffering.
When I first learned the details of Luigi Mangione’s story, I immediately thought of my dad. Please know, this will not become an endorsement or justification of murder. It’s simply an acknowledgment that when somebody is in chronic pain or navigates permanent disability, it changes a person. My dad was at least in his sixties when his pain and overtreatment began. And, fortunately, he channeled his pain into purpose as a cancer volunteer and was very connected to his family.
My mom built a career as a nurse and later as a hospital case manager. Whether she came home from work talking about how marvelous it was to hold a human heart in her hands (incidentally, when she worked at St. John’s) and play a role in saving somebody’s life. Or, she shared how gleeful she was when she could negotiate a patient’s acceptance at a skilled nursing facility that insurance initially didn’t want to cover. From my mom, I witnessed that while imperfect, healthcare can have a transformatively positive impact on people’s lives. And while I knew early on I was not built to administer care directly to patients, I want to be a part of that positive transformation.
So, the day I learned I was cancer-free, I doubled down on finding purpose for myself. I applied to Columbia University’s Certification of Professional Achievement in Narrative Medicine program to further develop my ability to teach storytelling and active listening to providers. A big part of finding meaning for myself is helping to improve patient-provider communication and enhancing patient safety by addressing how humans can muck up (and also heal!) healthcare. This is work I’m so grateful to have started after my thyroid cancer experiences, and I have received tremendous support for it as a member of Disability:IN.
I also completed Health Union’s Patient Leader Certification program. It’s comprised of three robust, complimentary modules on Powerful Storytelling, Meaningful Engagement, and Responsible Patient Leadership. If you have any kind of health diagnosis and want to hone your patient advocacy (or as they refer to it) patient leadership skills, I highly recommend the online program. Look for links at the conclusion of my story.
Thankfully, my body is cancer-free. I am going to keep celebrating this for as long as it remains true. After thyroid cancer, when my body was declared cancer-free, I made a pact with the divine.
I understand the assignment. I’ll stress less. Up my yoga practice. Deepen my nervous system regulation and somatic awareness practices. Stay in my body whenever I feel or speak hard things.
And I did all of this. I even built a vocal empowerment certification program teaching others how to do the same. But this time, it didn’t feel like there were any pacts to be made.
I’ve further minimized the little bit of red meat and sugar I eat. I’ve increased my intake of anti-inflammatory foods. I’ve returned to yoga and maintained my other wellness activities. I’m committed to my yearly mammograms and ultrasounds. Outside of these subtle adjustments, my opportunities for cancer prevention feel minimal.
My endocrinologist recently said, “Your body likes to grow things.” Given my history, I’m not naive enough to think, “This is it.” And, I also don’t want to constantly lose sleep or have a repeat of hives when I need scans or receive other diagnoses in the future.
One thing I know for sure, while I don’t want to think about DCIS more than I have to, I also want to use my experiences to help others. I’ll choose occasional discomfort over disengagement. I am by no means a DCIS expert. However, I do consider myself a blooming DCIS patient advocate, and this is a role I’m eager to continue to grow into.
During my journey, it was tricky to find anybody sharing a story like mine. Almost every DCIS narrative I read included a bilateral mastectomy, radiation, and/or in many cases, endocrine therapy. Almost nobody’s treatment plan was just surgery. Or, I encountered narratives that completely rejected Western medical treatment and put forth pseudo-scientific claims about how to heal malignant breast conditions.
I yearned for examples of a middle path, people who underwent breast-conserving surgery and then were not encouraged to pursue further treatment. People who integrated holistic treatments with more standard Western ones. I was just as desirous to read more accounts from women who wanted and needed to maintain their work while going through testing and treatment.
When I received my thyroid cancer diagnosis, a well-intentioned client and friend suggested I take six to twelve months off from work to rest and recalibrate. What a privileged thing to say!
Finding a pathway to prioritize all aspects of my health with the realities of being my family’s primary breadwinner has been tricky. Fortunately, meaningful, soul-aligned work, mixed with ample opportunities for rest, has been my pathway to well-being. Most of my internet searches and mental health spirals occur during “time off.”
I want to be a stand for those navigating health diagnoses and disabilities who don’t have the luxury to stop working and focus solely on their healing. I also want to keep shining a light on the tricky and necessary work of finding the sweet spot between over and under-treatment. And I want to model how to speak up even when (and especially when) it’s tricky to do so.
As I shared, my voice was not fully heard in the aftermath of my MRI-guided biopsy. It pains me that I was unable to help a high-volume healthcare facility address some systemic and communication failures. Nevertheless, I plan to keep advocating for patient safety in my professional and personal life.
In her book, When We Do Harm: A Doctor Confronts Medical Error, author Dr. Danielle Ofri says, “Communication with patients is one of the most powerful strategies we have to reduce medical error. It’s not the deus ex machina for everything, but nearly every medical error I’ve reviewed for this book could have been prevented—or would have its harm minimized—had there been better communication between medical professionals and patients.”
Improving patient safety through speak-up training for providers is already a part of my company’s most essential work. And as I mentioned earlier, I’ve applied to Columbia University’s Narrative Medicine program to, hopefully, get even better at it!
Many women who have gone through DCIS treatment report having felt guilty claiming an identity as a breast cancer survivor. DCIS is rarely fatal. Plus, chemotherapy is never a part of recommended treatment. However, in at least the U.S., many of the treatment recommendations are the same.
And, even for somebody like me who was very, very lucky only to need surgery, learning you have breast cancer can be traumatizing in its own right. Too much of what I found online while looking for DCIS information and resources amplified my discomfort rather than assuage it. I suspect I’m not the only one who has felt this way.
Below I share the most helpful articles, companies, and books I have found on my DCIS patient advocacy journey. I hope these can be helpful to you or anyone you may be supporting with a DCIS diagnosis. I also hope that, irrespective of why or how you landed here, you leave feeling more informed and empowered than I felt when I began my DCIS journey.
Whether you are here for yourself or somebody you care about, I also hope you leave with a renewed sense of possibility and can see yourself as a protagonist in the story you are creating. And, if there’s any way I can support you, please don’t hesitate to reach out.
“You may not control all the events that happen to you, but you can decide not to be reduced by them.” – Maya Angelou
DCIS
There are very few books written specifically about DCIS. I learned a lot from Jennifer Douglas’ A Breast Cancer Journey, a book about her DCIS experience. She underwent more treatment than I did. If reading about radiation or endocrine therapy might be triggering, then you may want to skip this book.
Patient Advocacy (not specific to DCIS)
Medical Gaslighting: How to Get the Care You Deserve in a System That Makes You Fight for Your Life by Ilana Jacqueline
The Patient’s Playbook: How to Save Your Life and the Lives of Those You Love by Leslie Michelson
Why We Revolt: A Patient Revolution for Careful and Kind Care by Dr. Victor Montori
Avoiding Medical Errors and Medical Harm
If I Betray These Words: Moral Injury in Medicine and Why It’s So Hard for Clinicians to Put Patients First by Wendy Dean, MD
When We Do Harm: A Doctor Confronts Medical Error by Dr. Danielle Ofri
Becoming the Protagonist in Your Health Journey
The Longevity Formula: Ayurvedic Principles to Reduce Inflammation, Increase Cellular Repair, and Live with Vitality by *Avanti Kumar-Singh, MD
*Avanti Kumar-Singh is a former client and dear friend, and she wrote her book while navigating her own breast cancer diagnosis.
Big Medicine: Transforming Your Relationship with Your Body, Health, and Community by Dr. Pierre Morin
Returning Home to Our Bodies: Reimagining the Relationship Between Our Bodies and the World by Abigail Rose Clarke
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