What the ATA Guidelines Get Wrong About PTC: A Personal Reckoning

In a world where advancements in medicine and technology continue to evolve rapidly, keeping guidelines up-to-date and patient-centered has never been more crucial. However, the current ATA guidelines on Papillary Thyroid Carcinoma (PTC) remain glaringly conservative, and as a thyroid cancer survivor, I understand the dire consequences first-hand.

Today, I propose new ATA guidelines that emphasize a patient-first approach, drawing from my traumatic experiences with thyroid cancer surgery. 🛑 🛑

When I discovered I had a thyroid nodule, the journey seemed fairly straightforward: get a diagnosis, follow the ATA guidelines, and place my trust in the hands of the medical community.

Never did I anticipate that this trajectory would become my nightmare.

Rushed into an unnecessary surgery by an unskilled surgeon, and then battling post-operative consequences that significantly impaired my quality of life, perhaps more than the disease ever could.

The lively richness that once defined my voice vanished, and my career as a public speaker went with it.

Social gatherings and interactions — once a source of joy — became a challenge.

My voice, a significant part of my identity, became a struggle in settings that required vocal interactions, leading to my withdrawal from many social occasions.

Compounding this loss was the impact on my physical health.

I received a vocal cord implant, which brought an unforeseen complication — reduced VO2 max.

The dangers of a lowered VO2 max extend beyond physical limitations; they indicate reduced cardiovascular efficiency and can correlate with a lower life expectancy.

Living without a thyroid introduced another set of challenges.

Despite having ‘normal’ TSH levels, I was continually plagued with hypothyroid-like symptoms:

Brain fog clouded my cognitive functions, neck stiffness, and tightness became daily nuisances due to nerve damage, and routine actions like swallowing became hazards, with constant threats of aspiration and choking.

Concise List of Consequences of My Thyroid Surgery:

1. Physical Impairments: Including shoulder pain, problems swallowing, and breathing issues often linked to RLN damage.

2. Quality of Life Downgrade: A significant reduction in life quality due to societal and medical minimization of thyroid cancer’s impact.

3. Financial and Mental Strain: Encompasses bankruptcy and mental impairments like brain fog and anxiety.

4. Osteoporosis and Additional Health Concerns: There’s a direct correlation with TSH suppression and other conditions like weight gain and stiff neck post-surgery.

5. Collateral Damages: Including scarring, dependence on levothyroxine, and exposure to RAI with its severe consequences.

For a more comprehensive exploration of the extensive and enduring repercussions of thyroid surgery, please take a look at this [detailed article] which delves into the multifaceted challenges and dire outcomes patients face post-surgery.

These personal experiences are not merely anecdotes; they underline the pressing need to revise the ATA guidelines. The guidelines’ present form emphasizes swift diagnosis and treatment, often overlooking crucial patient-centered discussions.

The Finnish study, revealing that one in three people die with PTC and not from it, and Dr. Miyauchi’s findings of some malignant nodules shrinking over time without treatment highlight the essence of adopting a more patient-informed approach.

The current U.S. medical landscape, fraught with bureaucratic entanglements, benefits immensely from looking towards nations like Ecuador, where doctors like Dr. Cristhian Garcia spearhead innovative treatments beyond the traditional conservative boundaries.

Emphasizing non-invasive treatments like ablation and observation should be prioritized, allowing patients to decide their treatment trajectories. This decision-making process should include comprehensive discussions about all potential outcomes, risks, and treatment paths.

We recognize that while guidelines aim to provide a structured path, they must evolve continuously, reflect the latest advancements, and, most importantly, be inherently patient-centered.

My story is not just mine; it echoes the sentiments of countless others who have suffered due to outdated guidelines. No matter how routine, medical procedures have consequences that ripple through a patient’s life.

Our guidelines, doctors, and medical systems must recognize and prioritize this.

Let my story be a beacon, urging us to look beyond surgical instruments and medical protocols, placing empathy, patient autonomy, and informed discussions at the forefront.

🛑 Current ATA Guidelines Summary:

1. Risk Assessment and Diagnostic Evaluation: Rapid identification, evaluation, and fine needle aspiration (FNA) of suspicious nodules.

2. Treatment Protocols: Emphasis on thyroidectomy and postoperative staging, followed by radioactive iodine therapy and TSH suppression therapy when deemed necessary.

3. Long-Term Surveillance: Ongoing regular follow-ups including imaging and lab testing.

🛑 Proposed Revamped ATA Guidelines:

1. Initial Patient-Doctor Dialogue: Before any testing or treatments, a comprehensive and empathetic discussion with the patient about PTC, addressing its low fatality rate and possible treatment paths, and emphasizing patient values and preferences.

2. Informative and Fear-Reducing Approach: Providing patients with detailed, understandable, and reassuring information about the benign nature of most PTC cases, referencing credible studies and statistics that show PTC rarely results in death (<0.3% of cases).

3. Patient-Centered Risk Assessment and Decision-Making: An individualized approach to evaluating nodules and deciding on treatment paths that respect and prioritize patient autonomy and informed consent.

4. Emphasis on Non-Invasive Treatments and Observation: Prioritizing discussions on advanced non-invasive treatments like ablation and observation, allowing patients to choose more conservative approaches based on their informed preferences.

5. International Treatment Options and Innovations: Informing patients about innovative treatments available internationally due to less restrictive medical frameworks, allowing more freedom in choosing treatment paths.

We acknowledge the importance of individual autonomy and informed decisions by revamping the ATA guidelines to this more patient-centered approach. This shift aims to foster a medical environment where fear and misinformation are replaced with understanding and compassion, allowing patients to make the best life choices rather than being hastily ushered through outdated doctors and lagging ATA Guidelines.

Powerful Statement:

The above path may threaten the livelihoods of some thyroid cancer surgeons and companies specializing in thyroid replacement hormones.

However, it’s high time medicine focuses on fostering healing and respecting the individual journeys of each patient, aligning interventions with their intrinsic values, beliefs, and unique life contexts, even if it means disrupting established norms and industries.

The proposed revisions aim to put the patient first, allowing the individual to decide on his or her PTC treatment — not the doctors or outdated guidelines.