In this article, discover how overtreatment negatively impacts health outcomes and how to advocate for personalized treatment options grounded in data and shared decision-making.
Since turning 40, my body has been diagnosed with two of the most overtreated cancers—papillary thyroid cancer and ductal carcinoma in situ (DCIS), which is a stage 0, non-invasive breast cancer. Both of these diagnoses impact more women than men.
While I’m grateful to have had very treatable cancers, research on both conditions suggests they can be overdiagnosed and overtreated.
In both cases, I worked hard to find high-volume surgeons who provided treatment recommendations based on my specific pathology results. And in both cases, I left my home state to make that happen.
This article explains how low-grade cancers can be overdiagnosed and why more treatment does not always mean better care, increased patient safety, or less risk of recurrence.
It’s important for all of us, particularly women, to be vocally empowered. When receiving diagnoses, we must raise our voices and ask questions to ensure the recommendations we receive are personalized and evidence-based.
When I was first diagnosed with papillary thyroid cancer (PTC), I was overwhelmed by the fear and uncertainty that comes with any cancer diagnosis. Yet, as I began researching, I realized that thyroid cancer is often overdiagnosed. The rate of diagnosis has increased dramatically in the past few decades, largely due to advances in imaging technologies, which detect small, often slow-growing tumors that may never have caused harm if left undetected.
Many thyroid cancers never affect a person’s health. The risk of overtreatment arises when these small, low-risk cancers are identified and then treated like more aggressive cancers. Some patients undergo surgeries, radiation, or lifelong thyroid hormone replacement therapy without any evidence that these treatments will improve their prognosis. The same is true for other cancers, including DCIS.
DCIS is referred to as “stage 0” because the abnormal cells have not spread beyond the breast milk ducts. Though it’s considered a precursor to invasive breast cancer, it often doesn’t progress to this. Despite this, many women diagnosed with DCIS are recommended for treatments like mastectomies, radiation, and endocrine therapy like Tamoxifen, even though these treatments might not improve long-term survival and come with significant side effects that can be more dangerous than a recurrence of DCIS.
Overdiagnosis happens when a disease is diagnosed that is unlikely to cause harm. It’s a term that’s particularly relevant to cancers like papillary thyroid cancer and DCIS, which are often detected through routine screenings or imaging but may not require treatment.
Take papillary thyroid cancer. Studies have shown that as many as 60% of thyroid cancers discovered during autopsies in people who died from unrelated causes would have never caused symptoms. Yet, once diagnosed, patients are often treated with a full thyroidectomy, require lifelong thyroid hormone therapy, and in some cases are treated with radioactive iodine, even though the cancer may have never affected their health.
The increase in overdiagnosis is troubling, as it leads to overtreatment, unnecessary side effects, and anxiety for patients who suspect they may not need the aggressive interventions they are being offered.
Shortly after I started speaking about my DCIS patient advocacy journey, a woman reached out to me after her diagnosis. She shared that after a biopsy found low-grade DCIS, she was told her options were a full mastectomy or a partial mastectomy, often referred to as a lumpectomy, followed by radiation treatment and 5 years of Tamoxifen. And yet, no clinician or surgeon had ordered PreludeDx’s DCISionRT® test, so these decisions were not based on personalized genomic data that could have informed a more tailored and potentially less invasive treatment approach.
I was able to receive a partial mastectomy and avoid both radiation and Tamoxifen as a result of this DCISionRT® test, and I recommend it to anybody who receives a DCIS diagnosis before making treatment decisions.
My experience with both papillary thyroid cancer and DCIS reinforced the importance of becoming a patient advocate for myself. When I received my thyroid cancer diagnosis, I didn’t simply accept the first treatment plan offered to me. Instead, I made it my mission to find the most evidence-based, personalized approach.
The first surgeon I saw was adamant that I needed a full thyroidectomy—even though it was more of an intervention than I thought clinically necessary based on the research I’d done and that the suspicious spot on my thyroid had stayed the same size for almost a decade.
Although I left my appointment having set a surgical date, my nervous system went into overdrive. I started having panic attacks and nightmares.
So, I canceled my surgery. And after a few months of waiting, I chose to get an online second opinion.
During my virtual consult, my surgeon and her team asked me questions, gave me permission to ask my questions, and ultimately outlined a choice that centered my wish not to have more surgical intervention than was warranted.
I traveled across the country to receive a partial thyroidectomy at the Clayman Thyroid Center, which left me with nearly full thyroid function and needing just low-dose thyroid supplementation.
Each person’s situation is unique. The key is to remember that you are the one who lives with the consequences of your medical decisions. And nobody will care more about your body than you do. Therefore, it’s essential to seek out second and sometimes even third and fourth opinions, ask tough and important questions, and make sure your treatment plan is aligned with your values and personal circumstances.
One of the most empowering aspects of my cancer experiences was finding oncological surgeons who embraced my desire for shared decision-making. Shared decision-making is a collaborative process where the patient and clinician work together to make decisions about treatment based on the best available evidence, the patient’s preferences, and their unique situation.
After an MRI was highly suspicious for breast cancer, I found an oncological surgeon, Dr. Janie Grumley, who was committed to helping me avoid overtreatment. She explained that the research on DCIS had evolved in recent years and that a partial mastectomy, removing a small area of DCIS, or “active surveillance”—watching and waiting—could be viable options for low-grade DCIS.
PreludeDx confirmed that my risk of recurrence with low-grade DCIS was very low, and that neither radiation nor a bilateral mastectomy would improve my survival outcomes since this was a non-terminal diagnosis.
Dr. Grumley’s approach allowed me to feel like an equal partner in my treatment decisions, which gave me a sense of control over my health that was invaluable during such an uncertain and scary time.
When faced with important decisions regarding your health or well-being, it’s essential to ask the right questions. This ensures you are making informed choices that are evidence-based and align with your personal values and goals.
Here are some questions to consider:
As the founder and CEO of Step into Your Moxie, a communication and leadership development company, I’m passionate about empowering individuals to speak up for themselves and make informed decisions that align with their personal values.
It’s easy to feel powerless when faced with a serious diagnosis like cancer. Clinicians often hold the knowledge, and their recommendations can feel like mandates. However, it’s critical to remember that you have the right to be involved in your treatment decisions. You have the power to seek additional opinions, ask for alternatives, and prioritize treatments that align with your long-term health goals.
During my patient advocacy journey, I learned that if I couldn’t have an open, honest conversation with my surgeon about my concerns, then I couldn’t feel confident in the treatment they were recommending.
Avoiding overtreatment is not just about reducing the physical risks associated with unnecessary interventions—it’s about feeling empowered in your health journey. While it’s important to trust your healthcare team, you should always remember that your body, your health, and your decisions are ultimately your own. Many diagnoses have different treatment options.
Whether you’re facing a diagnosis of thyroid cancer, DCIS, or any other condition, empower yourself through credible research.
Unapologetically ask questions. Advocate for a treatment plan that is evidence-based and truly personalized.
The health journey you choose may not be the path others take, and that’s okay. Trust yourself to make the decisions that are right for your body, your life, and your long-term well-being.
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