The Challenges of Breast Cancer in India

Introduction

Breast cancer is the commonest cancer of women globally and in India. According to GLOBOCAN 2022, breast cancer accounts for nearly 23 lakh new cases each year. In India, nearly 2 lakh cases of breast cancer are diagnosed every year. In India, 1 in 28 women will develop breast cancer during their lifetime.

Due to intense research efforts, breast cancer has become highly curable. Unfortunately, 50–60% of breast cancer cases in India are still diagnosed at Stage 3 or beyond, compared to less than 10- 20% in high-income countries. Five-year survival rate in western countries is nearly 85 to 90%. However, India lags behind significantly in this regard: the five-year survival figure is around 60% only in India. The poor outcomes of breast cancer treatment in India, as compared to developed countries, stem from a combination of medical, social, infrastructural, and economic factors which can be broadly grouped into two as patient factors and system factors.

Reasons for Worse Survival of Breast Cancer Patients in India

• Late diagnosis of breast cancer
• Lack of access to standardized high quality breast cancer care for a large proportion of breast cancer patients

The problem of delay in diagnosis can be managed at the patient (society) level by spreading awareness, guiding them to early symptoms and signs of breast cancer, educating them about breast self-examination, encouraging them to seek medical help early.

The problem of delay in diagnosis at the level of healthcare system needs multi-pronged efforts. It is important for the clinicians who see patients with breast symptoms to understand that early diagnosis and prompt initiation of treatment are critical for successful outcome of breast cancer treatment. Every clinician must know that for early and accurate diagnosis, the most reliable step is “triple assessment”— clinical examination, imaging, and pathological confirmation of diagnosis by biopsy.

Clinical Examination
A detailed history (age, family history, duration, changes in size) and systematic clinical examination of the breasts and axillae to detect lumps, skin changes, nipple retraction, discharge, or palpable nodes.

Imaging

• Mammography: gold standard for women over 40
• Ultrasound: especially useful for younger women with dense breasts
• MRI: reserved for complex cases, multi-focal disease, or inconclusive findings.

Pathological Assessment

• Image guided core needle biopsy, which gives not just diagnosis but tumour grade, receptor status (ER, PR, HER2), all this information is essential for treatment planning.

When all three correlate, the diagnostic accuracy exceeds 99% — minimizing false negatives and false positives.

Challenges in Breast Cancer Care in India

In this article, we would like to describe some of the challenges we perceive (as breast specialists) which define the breast cancer care in our country.

Lack of Trained Breast Specialists

Breast cancer care is now a recognized specialty in India, and many young doctors are taking it up. However, most women with breast symptoms first visit healthcare providers who are not trained in breast examination or cancer screening.

• Many healthcare providers lack training in proper breast examination.
• Triple assessment (clinical exam + imaging + biopsy) is not routinely followed.
• Important signs like skin changes or nipple retraction are missed.
• Breast lumps are often dismissed as 
• Breast pain is treated casually with Vitamin E or evening primrose oil without proper tests.
• Advanced cancers are mistaken for mastitis/breast infection.
• Breast cancers during pregnancy are mostly misdiagnosed as pregnancy associated breast changes.
• Many doctors “manage” breast cancers themselves despite not having the right skills.

This casual approach, poor clinical examination skills, lack of awareness about “triple assessment (clinical exam, imaging, and biopsy), and wrong interpretation of symptoms lead to diagnostic delays and worse outcomes. It is necessary to train and sensitize healthcare providers to detect and refer suspected cases early.

Problems in Breast Imaging and Reporting
Standards of breast imaging in India vary widely, especially between urban and rural centres.

• Many reports don’t follow BIRADS guidelines or assign wrong categories.
• Indian women have denser breasts, making mammograms harder to interpret.
• Poor communication between doctors and radiologists, outdated machines, and shortage of trained breast radiologists add to the problem.
• In rural areas, lack of modern imaging and expert reporting means more women are diagnosed late.
• Younger women (more likely to have triple-negative cancers) often get benign-sounding reports, leading to missed diagnoses.

Continued Use of FNAC (Fine Needle Aspiration Cytology) for diagnosis and planning treatment
Although once common, FNAC has major drawbacks:

• Less accurate than core needle biopsy (more false negatives).
• Does not give enough tissue for ER/PR/Her2/Ki67 testing.
• Cannot confirm invasion or grade the tumour.
• No information on margins, lymphovascular invasion, or surrounding tissue.
• Sampling errors are common, leading to missed cancers.

Overuse of Direct Excision Biopsies without Proper Assessment
Many women are advised to have their lump removed directly without imaging or core biopsy because breast surgery is wrongly thought to be “easy.”

• Myths about biopsy spreading cancer make patients agree to excision.
  
• Sometimes the removed lump is not sent for pathology, denying diagnosis.
  
• Specimens are often removed into pieces or not oriented for margins, making accurate size and margin clearance assessment impossible.
  
• Poorly placed surgical incisions may prevent breast conservation later.
  
• Axillary node assessment is not done, requiring another surgery.
  
• These issues can delay treatment and reduce chances of cure.

Starting Treatment without knowing IHC Results (Biological profile of the individual’s breast cancer)
Today, breast cancer treatment is personalized. Information on tumour biology (ER/PR/Her2/Ki67) and stage is essential for planning.

• Patients with certain subtypes (triple-negative, Her2-positive) or large tumours benefit from neoadjuvant systemic therapy before surgery.
• Without these details, outdated “mastectomy first” approaches deny patients the advantages of modern treatment.

Overuse of Mastectomy
Many women undergo mastectomy solely based on FNAC results, sometimes even when it’s a false-positive.

• Breast conservation surgery (BCS) is equally safe for early cancers, but lack of surgeon training, old beliefs, and ignorance mean that 2/3 of breast cancer surgeries in India are still mastectomies.
• Mastectomy can cause lifelong psychological distress. Although, breast reconstruction can be safely performed after mastectomy, it requires advanced surgical skills, extra days of hospitalization and post-surgical recovery and significantly additional cost compared to the breast conservation surgery.

Incomplete Mastectomies
When performed by untrained surgeons, mastectomy may leave significant breast tissue or lymph nodes behind.

• This leads to high recurrence risk and rapid disease progression.
• Completion surgery is technically difficult and may prevent breast reconstruction.
• Scarring and poor incision placement complicate future treatments.
• Delays in adjuvant therapy worsen prognosis.

Very limited availability of resources and skills for sentinel node biopsy
Without SLNB, many women with early breast cancer undergo full axillary lymph node dissection, even when nodes are not involved.

• This causes high risk of complications such as arm swelling (lymphedema), shoulder stiffness, numbness, chronic pain, and higher risk of wound problems.
• It prolongs recovery, lowers quality of life, and leaves lasting disability.
• SLNB is a safer, less invasive, guideline-recommended procedure.
• Many Indian patients face avoidable harm and overtreatment due to this.

Issues related to systemic Therapy for Breast Cancer

• Drug availability & cost barriers: Newer targeted drugs and supportive medicines may be unaffordable or unavailable for many patients.
• Incomplete biological profiling: ER, PR, Her2, and Ki67 tests are sometimes not done before starting chemotherapy, leading to non-personalized treatment.
• Use of outdated regimens: In smaller centres, older protocols may still be used instead of evidence-based modern regimens.
• Risk of errors & high toxicity: Incorrect dosing, poor monitoring, and lack of proper supportive care can cause preventable side effects.
• Infrastructure limitations: Many places lack dedicated day-care chemotherapy units, proper infection control, and trained oncology nurses.
• Inadequate patient counselling: Patients may not receive enough guidance on side effects, fertility preservation, or the importance of completing all cycles.
• Poor adherence to treatment: Due to side effects, cost, or lack of awareness, some patients discontinue therapy early, reducing chances of cure.

Issues related to Radiotherapy for Breast Cancer
Limited availability of advanced technology: Many centres still use outdated cobalt machines instead of modern linear accelerators with 3DCRT, IMRT, or IGRT capabilities.

• Geographic and access barriers:  Radiotherapy facilities are concentrated in larger cities, forcing rural patients to travel long distances daily for several weeks.
• Long waiting times: High patient load and limited machines lead to delays in starting treatment, which can worsen outcomes.
• Lack of breast-specific techniques: Inadequate use of advanced methods like deep inspiration breath-hold (DIBH) to protect the heart and lungs in left-sided cancers.
• Inconsistent treatment quality: Variation in contouring, planning, and dose delivery between centres due to lack of standard protocols or quality audits.
• Shortage of trained staff: Limited numbers of radiation oncologists, physicists, and technologists with specialized breast cancer training.
• Side effect management gaps: Insufficient counselling and follow-up for managing skin reactions, fatigue, lymphedema, and late toxicities.
• Financial burden: High cost of advanced radiotherapy techniques and travel/accommodation expenses during prolonged treatment courses.

Challenges in Genetic Counselling and Testing for Breast Cancer patients.
Low awareness: Many patients and even healthcare providers are unaware of the role of BRCA and other genetic mutations in breast cancer risk.

• Limited availability of trained counsellors: Very few centres have qualified genetic counsellors to guide patients and families.
• High cost of testing: Genetic tests are expensive, often not covered by insurance, and unaffordable for many patients.
• Access barriers: Testing facilities are concentrated in urban centres, limiting availability for rural populations.
• Cultural and social stigma: Fear of discrimination, marriage-related concerns, and family pressure discourage many from testing.
• Poor integration into routine care: Genetic risk assessment is not consistently incorporated into breast cancer evaluation and follow-up.
• Lack of pre- and post-test counselling: Inadequate explanation of test implications can lead to anxiety, misinterpretation, or misuse of results.
• Limited cascade testing: Family members at risk are rarely offered or encouraged to undergo testing.
• Data privacy concerns: Fear of genetic information misuse due to weak legal safeguards.
• Missed prevention opportunities: Without testing, high-risk women lose the chance for preventive measures such as enhanced screening, chemoprevention, or prophylactic surgery.

Concerns Related to Recurrence Score Testing in Breast Cancer
High cost: These tests are expensive and often not covered by insurance, making them unaffordable for many patients.

• Limited availability in India: Most samples are sent abroad, increasing cost and turnaround time.
• Delay in treatment decisions: Waiting for results can postpone the start of adjuvant therapy.
• Lack of awareness:  Many oncologists and patients are unfamiliar with the availability, benefits, and limitations of these tests.
• Unclear applicability in all populations: Most validation studies are from Western populations; Indian-specific outcome data is limited.
• Infrastructure and logistics: Sample collection, preservation, and international shipping may be challenging, especially in smaller centres.
• Patient anxiety: Misunderstanding the meaning of recurrence scores can cause unnecessary worry or false reassurance.
• Limited use in public sector: Government hospitals rarely offer or recommend such tests due to cost constraints.
• Ethical and equity concerns: Only wealthier patients can access these tools, creating disparities in personalized cancer care.

In summary: Improving breast cancer outcomes in India requires:

• Training doctors in proper clinical and diagnostic pathways.
• Enforcing quality standards in imaging and reporting.
• Phasing out FNAC for diagnosis in favour of core biopsy.
• Working towards establishing early diagnosis and prompt initiation of treatment.
• Making breast cancer treatment available and affordable to all the patients
• Avoiding unnecessary or poorly performed surgeries.
• Multi-disciplinary approach to ensure that the treatment decisions are made after full pathological and biological assessment.
• Ensuring oncological safety and working towards preserving long term quality of life of the survivors.