It began as something deceptively simple when I was 52. After long flights and longer workdays as a global marketing executive, my eyes felt tired. They struggled to focus and the world appeared hazy. One afternoon in Delhi, as I tried to cross the road, the city around me fractured into multiple blurry images. It was terrifying. I blamed jet lag at first and even got a new pair of glasses. But nothing changed. A second eye specialist sensed that something bigger was wrong and uttered a phrase I had never heard before: Myasthenia Gravis. A neurologist confirmed it, and the first pill cleared my vision instantly. I just had to repeat my medicine every four hours. I thought the ordeal was over, but it was only beginning. Further tests revealed a tumour in my thymus gland. I was diagnosed with Invasive Thymoma Type B2 Masaoka stage 3, with Myasthenia Gravis woven into the story as one of its warning signs.
What unfolded over the next four to five months was not just the discovery of a disease but of an entire ecosystem of gaps, uncertainties, and hidden struggles that define the rare cancer experience.
Challenges faced as a rare cancer patient
The first challenge was isolation. Thymoma is so rare that most people may never meet a patient in their lifetime. According to global estimates, only 1.3 to 1.5 cases appear per million people a year. It accounts for less than one percent of adult cancers. When you hear such numbers, you realise why reliable guidance is hard to find. Every statistic seemed to depend on sample sizes too small to offer clarity. Even medical practitioners often had limited exposure to thymoma.
The rarity also made it difficult to find others who understood what I was going through. In rooms full of cancer fighters, I was the only thymoma patient. Their empathy was real, but their journeys were dramatically different. I had no map to follow. My initial days were consumed by endless online searches that led to contradictory information.
The next challenge was navigating treatment options. My tumour was three inches big, and during the surgery at Ganga Ram Hospital, Delhi, the doctors discovered that it had also infiltrated the left phrenic nerve. They performed a robotic radical thymectomy with left phrenic nerve and pericardial resection, followed by robotic plication of the left hemidiaphragm. The resection was grossly R-0, which gave me hope, yet the process was physically and emotionally intense.
Explaining this rare cancer to loved ones was another hurdle. Family and employers were supportive, but no one had heard of thymoma. It was a lonely experience that made me appreciate how invisible rare cancers can be in public discourse.
Insights into the gaps in data, diagnosis, and treatment options
My journey exposed a fundamental truth: the healthcare system is not designed for people with rare cancers. The biggest blind spot is data. Thymoma research is limited to small studies and sporadic case reports. The absence of robust registries makes it nearly impossible to form evidence-backed guidelines. “Statistically significant” becomes an unattainable luxury when patient numbers are low.
Diagnosis is another vulnerable area. Rare diseases are often missed or misinterpreted because they do not fit common clinical patterns. There is a well-known medical phrase: when you hear hoofbeats, think horses, not zebras. It encourages doctors to consider common conditions first. Unfortunately, it also delays the recognition of rare diseases like thymoma. In my case, Myasthenia Gravis acted as a clue, but many others are not as fortunate.
Treatment options are also constrained. Pharmaceutical companies are less inclined to invest in therapies for small patient populations, and clinical trials are harder to conduct. Doctors often depend on expert consensus rather than large-scale evidence. The National Comprehensive Cancer Network (NCCN) guidelines for thymoma are also based heavily on such consensus because of the limited clinical data available.
Even I received varied responses from oncologists regarding post-surgery radiotherapy or chemotherapy. Ultimately, I went against the advice of all the oncologists I consulted in India – as well as the NCCN guidelines – and followed the recommendation of a doctor and thymoma lead in the UK and did nothing. I am grateful I did.
Immunotherapy and other advanced treatments also offer hope, yet the scarcity of thymoma-specific trials often limits access.
Policies matter too. The Ministry of Health and Family Welfare introduced the National Policy for Rare Diseases (NPRD) in 2021; however, it emphasises genetic and metabolic disorders. Rare cancers remain underrepresented.
These gaps do more than slow diagnosis and treatment. They cast long shadows over the lives of patients who are already grappling with frightening uncertainty.
Role of policymakers in improving rare cancer care and awareness
Policymakers have a unique responsibility in the rare cancer ecosystem. Scientific advances alone cannot solve the challenges because they come too slowly for patients who urgently need answers. Structural change must complement scientific progress.
First, policymakers should fund rare cancer research based on complexity and need rather than population size. Prevalence-based funding models leave rare cancer communities stranded despite their high clinical challenges.
Second, national registries must be established and strengthened. When data is aggregated across institutions, patterns can be identified and treatments refined. These registries also support clinical trials, which are essential for developing better therapies.
Third, patients with suspected rare cancers should not wander between hospitals. They need direct access to centres with the expertise to diagnose and treat these conditions.
Fourth, public and professional awareness campaigns can help reduce diagnostic delays. Rare cancers need visibility so that general practitioners and specialists can identify red flags early.
Finally, policies must shield needy patients from financial hardship. Supportive policies can ease these burdens and improve outcomes.
Need of the hour: data collection and support systems
A decade after treatment and recovery, I believe the rare cancer community’s greatest need is a dual one: reliable data and meaningful support systems.
Data is the foundation of progress. Comprehensive registries and mandatory data-sharing across centres can revolutionise treatment. Every patient’s journey contains insights that could improve someone else’s. Without structured data, the same mistakes repeat across generations of patients.
Support systems are equally vital. Rare cancer patients often shoulder heavier emotional loads because uncertainty clouds every step. Stronger survivor networks and patient navigators could ease these burdens. Community matters, especially when your disease is rare enough to feel invisible.
Globally, few structured thymoma support communities exist, such as ITMIG and ThymicUK, which provide valuable platforms. Yet India still lacks its own thymoma-focused support structure. We need patient groups, collaborations with major cancer centres, and efforts to create national thymic cancer registries. Awareness-building through storytelling, survivor networks, and media engagement can also help.
Closing reflections
Surviving stage III thymoma has taught me that courage grows in the spaces where answers are missing. Yet resilience should not be the only support available to rare cancer patients. With better data, smarter policies, stronger communities, and deeper awareness, the landscape can change. Being rare does not mean being invisible—and it should never mean being alone.