When most people think about cancer, they envision the well-known culprits—breast, lung, or colon cancer. But tucked away in the shadows of oncology lies a group of rare malignancies that affects thousands of people worldwide, yet remains largely misunderstood by both patients and healthcare providers. July marks Sarcoma Awareness Month, a critical time to illuminate these complex cancers that originate in our bones and soft tissues.
Understanding Sarcoma: The Forgotten Cancer:
Sarcomas are a rare group of cancers that develop in the connective tissues of the body—our bones, muscles, cartilage, blood vessels, tendons, and fat. Often called the “forgotten cancer” due to their rarity and lack of public understanding compared to other cancers, sarcomas account for only about 1% of all adult cancers, but around 15% of childhood cancers.
The statistics paint a sobering picture: In 2025, approximately 13,520 cases of soft tissue sarcoma and approximately 3,770 cases of bone and joint cancer are expected to be diagnosed in the United States alone. With some 5,410 and 2,190 people expected to die from soft tissue and bone sarcomas, respectively, the five-year survival rates stand at 66% for soft tissue sarcomas and 68.5% for bone and joint sarcomas.
The Indian Scenario: Growing Concern:
In India, the landscape of sarcoma presents unique challenges. Sarcoma represents a relatively rare cancer type in India and contributes to only about 0.6% of all cancers. However, the numbers are concerning when examined closely. Based on hospital-based cancer registries, osteosarcoma was found to be the most common bone sarcoma, followed by Ewing sarcoma/PNET and chondrosarcoma.
Recent data from the Indian Cancer Registry Programme indicates that bone sarcomas are rare tumors, approximating 0.2% of all cancers, with osteosarcoma (OGS), chondrosarcoma, and Ewing sarcoma being the most common cancers. Notably, Ewing sarcoma comprised around 15% of all bone malignancies, with 68% of cases occurring in the 0–19 years age group.
A particularly striking finding from Indian data shows that the median age of soft tissue sarcoma patients in India was 45 years, which is a decade earlier than that in developed countries. This early occurrence may be attributed to the differing age spectrums of the population, as a significant proportion of the Indian population is young.
The 2025 Theme: “KNOW. ACT. ADVOCATE”
This year’s Sarcoma Awareness Month 2025 theme is “KNOW. ACT. ADVOCATE”. This powerful theme emphasizes the significance of spreading knowledge about sarcoma, promoting timely diagnosis and treatment, and enabling communities to speak up for support and research. The theme underscores the shared responsibility to raise awareness, enhance results, and advance sarcoma treatment.
For 2025, there’s a specific focus on healthcare professionals—the people best placed to spot the early signs of sarcoma. From GPs to physiotherapists to radiologists, organizations are sharing practical guidance, training resources, and real stories from peers working with sarcoma.
Recognizing the Warning Signs
Bone Sarcoma Symptoms
The symptoms of bone sarcomas can often be mistaken for common injuries or growing pains, especially in young people. Key warning signs include:
- Persistent bone pain that worsens at night or during rest
- Swelling or a lump around the affected bone area
- Limited range of motion in nearby joints
- Unexplained fractures with minimal trauma
- Fatigue and unexplained weight loss in advanced cases
Soft Tissue Sarcoma Indicators
Soft tissue sarcomas present different challenges as they often develop deep within the body. Warning signs include:
- A painless lump that can be felt through the skin
- A mass that grows larger over time
- Pain or soreness as the tumor presses against nerves or muscles
- Limited movement if the tumor affects muscles or joints
- Numbness or tingling in affected areas
Fifty percent of patients in India had symptoms for more than 5 months before diagnosis. The painless nature of swelling, combined with a lack of health awareness and limited access to healthcare, results in delayed diagnosis of these tumors.
Risk Factors: Who’s at Higher Risk?
Understanding risk factors is crucial for early detection and prevention strategies:
Age-Related Patterns
- Bone sarcomas like osteosarcoma and Ewing’s sarcoma often occur in children and young adults during periods of rapid growth
- Soft tissue sarcomas are more commonly diagnosed in those 55 years or older
- In India, the highest incidence rate was in the 10–14 years age group (male: 4.4 per million, female: 2.9 per million)
Genetic Predisposition
Several inherited conditions increase sarcoma risk:
- Li-Fraumeni syndrome
- Neurofibromatosis type 1
- Hereditary retinoblastoma
- Familial adenomatous polyposis
- Werner syndrome
Environmental and Treatment-Related Factors
- Previous radiation therapy for other cancers significantly increases risk
- Chemical exposure to herbicides, arsenic, and dioxin
- Chronic lymphedema in arms or legs
- Viral infections like Human Herpes Virus 8 in immunocompromised individuals
Diagnostic Challenges in India
The diagnostic journey for sarcoma patients in India faces several obstacles. A study from MedGenome Labs, Bangalore, analyzed 295 soft tissue sarcoma patients and found that clinically relevant fusion or mutation was identified in 186 patients, leading to clarification or reassignment of diagnosis in 24% of patients. This highlights the critical importance of advanced diagnostic techniques.
Five patients were initially misdiagnosed as non-Hodgkin’s lymphoma, soft tissue sarcoma, neurogenic tumor, and carcinoma in a recent study from Kashmir, emphasizing the diagnostic challenges healthcare providers face.
Advanced Treatment Landscape
Personalized Medicine Approaches
The treatment landscape for sarcomas is rapidly evolving with precision medicine approaches. Recent research has developed zebrafish personalized medicine models for fusion-driven rhabdomyosarcoma, showing promise for identifying novel therapeutic targets.
Chemotherapy Protocols in Indian Settings
A significant development in India has been the successful implementation of interval-compressed chemotherapy schedules for Ewing sarcoma. A study involving 31 children showed that intensified chemotherapy administered every 2 weeks is tolerable with adequate supportive care in resource-constrained settings. The study achieved 87% event-free survival with good necrosis in 61% of cases after surgery.
Targeted Therapy Breakthroughs
An encouraging case from India involved a 48-year-old patient with rare RAF1 mutated sarcoma who showed excellent response to trametinib and low-dose chemotherapy. After three cycles of treatment, the patient had a partial response, and post six cycles, achieved a near-complete response.
The Importance of Early Detection
Early diagnosis can make a life-saving difference, but sarcoma is so rare that some doctors might only see one case in their career. This rarity creates a significant challenge in the healthcare system, where general practitioners and emergency room doctors may not immediately recognize the signs.
The data from India is particularly concerning: India has a poor cancer detection rate of 29%, with significant delays in diagnosis across major cancer types. This late-stage detection compounds the challenge of treating sarcomas effectively.
Healthcare Professional Education Initiatives
Recognizing the need for better awareness among healthcare providers, several initiatives are underway:
The National Sarcoma Awareness Project
The Bone Cancer Research Trust and Sarcoma UK have joined forces to support The National Sarcoma Awareness Project. This initiative aims at educating final year medical students and resident doctors about sarcoma, ensuring they are equipped with the skills to spot these cancers and understand how they are managed.
Telemedicine Solutions
An innovative approach being implemented in India involves telemedicine to help bone sarcoma management in rural areas. This technology-driven solution addresses the challenge of accessing specialized oncological care in remote regions.
Looking Ahead: The Future of Sarcoma Care
Research and Development
The field of sarcoma research is experiencing unprecedented growth. With RNA-based fusion NGS panel testing, diagnostic accuracy has improved significantly, leading to better patient classification and treatment planning.
Awareness and Advocacy
The SSO Cancer Hospital and other leading institutions in India are actively promoting awareness through educational programs. Tata Memorial Centre recently hosted a Sarcoma Awareness Meet on July 26, 2025, bringing together patients, families, and healthcare professionals.
Taking Action: How You Can Help
For Healthcare Professionals
- Stay updated on the latest diagnostic criteria and treatment protocols
- Maintain a high index of suspicion for persistent bone pain or growing lumps
- Establish referral pathways to specialized sarcoma centers
- Participate in continued medical education on rare cancers
For Patients and Families
- Don’t ignore persistent symptoms that don’t improve with standard treatments
- Seek second opinions for unusual diagnoses or treatment recommendations
- Connect with support groups and advocacy organizations
- Participate in awareness campaigns during Sarcoma Awareness Month
For the Community
- Support research funding for rare cancer research
- Share educational content on social media using #SarcomaAwarenessMonth
- Wear yellow throughout July to show support
- Advocate for better healthcare access in underserved communities
The Path Forward
As we observe Sarcoma Awareness Month 2025, the message is clear: knowledge saves lives. While sarcomas remain rare and challenging to diagnose, increased awareness among healthcare professionals, patients, and the general public can lead to earlier detection, better treatment outcomes, and ultimately, more survivors.
The journey ahead requires continued collaboration between researchers, healthcare providers, patients, and advocacy groups. With advances in precision medicine, improved diagnostic techniques, and growing awareness, there is reason for hope. Every conversation started, every healthcare professional educated, and every patient diagnosed early brings us closer to a future where sarcoma is no longer the “forgotten cancer.”
The theme “KNOW. ACT. ADVOCATE” isn’t just a slogan—it’s a call to action that can transform the landscape of sarcoma care, one awareness conversation at a time.
