Sarcoma Awareness Month: Experts raise alarm over Delhi’s silent cancer crisis

As the world observes Sarcoma Awareness Month this July, medical experts across Delhi are sounding the alarm over one of the most misunderstood, rare, and underdiagnosed forms of cancer. Often dubbed the “forgotten cancer,” sarcoma continues to pose a serious health challenge—especially in urban centres like Delhi, where both public and medical awareness remain dangerously low.

Affecting children, young adults, and the elderly alike, sarcoma is not only rare but also aggressive, complex, and frequently diagnosed too late for effective treatment.

Sarcoma refers to a group of cancers that develop in bones and soft tissues, including muscles, fat, nerves, blood vessels, and connective tissues. While it accounts for less than 1% of all adult cancers, it contributes to 15–20% of all childhood cancers. Medical professionals warn that the disease’s rarity often leads to misdiagnosis or neglect until it reaches an advanced stage, significantly reducing survival chances.

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Dr RK Grover, former Director of Delhi State Cancer Institute and Padma Shri awardee, notes that “sarcomas are deceptive,” as a painless lump today can turn into a life-threatening tumour tomorrow. He says early screening through a simple scan or biopsy can drastically improve the survival rate.

However, in most cases across Delhi, patients are diagnosed late—often after undergoing multiple incorrect treatments or referrals from local clinics.

He further adds that sarcoma is not just a single disease but over 70 different diseases hidden under one label. Each type behaves and responds differently to treatment. According to Grover, general hospitals and clinics must take the condition seriously and refer cases early to tertiary cancer centres. “Delay is deadly in sarcoma,” he warns.

Dr Harish Verma, Associate Director – Surgical Oncology at CK Birla Hospital, Gurugram, explains that sarcomas often arise without any identifiable cause, making early detection particularly challenging. These cancers originate in the body’s connective tissues—such as bones, muscles, fat, and blood vessels—and can affect people of all ages.

The complexity of sarcoma

Sarcomas are broadly classified into two categories: bone sarcomas and soft tissue sarcomas. Bone sarcomas, such as osteosarcoma and Ewing sarcoma, typically affect children and adolescents aged 10 to 25. Soft tissue sarcomas, such as liposarcoma, leiomyosarcoma, rhabdomyosarcoma, and angiosarcoma, are more common among adults over 40.

One major reason sarcomas often go undetected is the absence or subtlety of early symptoms. A deep-seated, painless lump may not cause alarm for months. Even when symptoms emerge, they are often vague and easily mistaken for more common conditions.

Dr Pooja Babbar, Consultant – Medical Oncology at Fortis Hospital, Manesar, points out that many people are still unfamiliar with the word “sarcoma.” She explains that, unlike breast, lung, or colon cancers, sarcomas present unique diagnostic and treatment challenges. Because of their rarity, they are often not recognised early.

She adds that the early signs—such as a painless lump in the thigh or arm—are frequently ignored or misread. “Imaging and biopsy demand expert interpretation—usually by a musculoskeletal oncologist or a specialist pathologist,” she says, warning that the window for timely intervention is narrow and often missed.

According to Verma, sarcoma lacks the identifiable risk triggers seen in other cancers, like smoking in lung cancer or HPV in cervical cancer. However, certain genetic syndromes such as Li-Fraumeni or neurofibromatosis, past radiation exposure, long-term contact with industrial chemicals, chronic lymphedema, and certain viral infections can elevate the risk.

While pinpointing the cause may not always be possible, he stresses that raising awareness of these factors—particularly among high-risk individuals—can facilitate early diagnosis and improve outcomes.

Diagnosis and treatment challenges

Babbar notes that soft tissue sarcomas are highly heterogeneous, with more than 70 subtypes. The diagnostic approach depends on tumour location: MRIs are used for extremities, CT scans for abdominal or retroperitoneal tumours, and PET-CT scans to evaluate metastasis, particularly to the lungs.

Treatment, she explains, requires a multidisciplinary strategy. While chemotherapy and radiation are staples for many common cancers, sarcomas are often surgically driven. “Surgery is the mainstay of treatment,” she says, noting that wide local excision with clear margins is crucial. In some cases, limb-salvage or reconstructive procedures may be necessary.

Babbar cautions that many sarcoma subtypes do not respond well to standard chemotherapy. This makes it essential for treatment to be highly individualised and subtype-specific. She emphasises that early detection and care from a team of oncologists, radiologists, pathologists, and specialised surgeons is key. “There is no one-size-fits-all approach for sarcomas,” she says.

Delhi’s unique challenges

Despite housing premier institutions such as AIIMS, Rajiv Gandhi Cancer Institute, and the Delhi State Cancer Institute, Delhi faces notable challenges in sarcoma care. Most patients initially consult general practitioners or smaller clinics, where the disease’s rarity often leads to misdiagnosis or delayed referrals.

Another concern is the absence of dedicated sarcoma registries, standardised protocols, or consistent public awareness programmes.

Grover underscores the urgent need for a structured policy for rare cancers like sarcoma. He believes that while Delhi has the medical infrastructure, it lacks the necessary awareness. “We need dedicated sarcoma clinics, government-backed treatment protocols, and insurance coverage for rare cancer patients,” he says. “Too many are lost to time and misdiagnosis.”

Prevention and cure

Although the causes of sarcoma are still not fully understood, some risk factors have been established. These include prior radiation therapy, exposure to industrial chemicals such as herbicides and vinyl chloride, genetic conditions like Li-Fraumeni syndrome, and chronic swelling due to lymphedema.

There is currently no vaccine or universal screening method for sarcoma. Prevention, therefore, depends on awareness and timely intervention. Experts emphasise that recognising early signs and seeking expert consultation—especially when standard treatments fail—can significantly improve outcomes.

The role of the public

As Sarcoma Awareness Month progresses, medical experts are calling on the public to engage actively. They encourage people to learn about the disease, spread information, and seek timely medical evaluation when symptoms appear.

“There’s no equivalent of mammograms or colonoscopies as a population-wide screening programme for sarcomas,” says Babbar. That makes public education critical. People must learn to recognise red flags and consult specialists early.

Warning signs include unexplained lumps or swellings, particularly if they are growing; deep-seated masses in the arms, thighs, or torso; persistent bone pain without an obvious cause; unexplained fractures; or difficulty in movement.

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A call for collective action

Several Delhi-based hospitals and NGOs—such as CanSupport, Friends of Max, and YouWeCan—are organising webinars, distributing educational materials, and providing emotional support to sarcoma patients and their families during Sarcoma Awareness Month. Yet, experts argue that one month of campaigning is not enough.

Grover asserts that consistent, year-round efforts are essential. “Sarcoma is rare—but that doesn’t mean it should be invisible. Every doctor, policymaker, and citizen has a role to play in changing the trajectory of this disease.”

Babbar agrees. She says success depends on early and accurate diagnosis, followed by expert-led treatment. “We as oncologists are not only supposed to treat but to create awareness, advocate early referrals, and ensure no patient is left to fight this rare cancer alone.”