What are the specific challenges faced by patients with rare Pulmonary cancers?

Lung cancer is one of the most prevalent cancers globally, with 72,510 new cases annually in India, according to a 2024 study. While non-small cell (NSCLC) and small cell lung cancer (SCLC) are the most common, rarer types are increasingly being diagnosed, each presenting unique challenges in diagnosis, treatment, and care.

The objective of this blog is to highlight the challenges faced by patients with rare lung cancers and explore how healthcare providers are addressing these issues with innovative solutions. Whether due to limited awareness, mis-diagnosis, or lack of specialised treatment, these cancers require a tailored approach. We’ll explore how the medical community is adapting to improve outcomes.
 

What are the challenges of rare lung cancer?
 

Rare lung cancers present a variety of challenges for both patients and healthcare providers. These cancers, which are less common than the more frequently diagnosed types like non-small cell lung cancer (NSCLC) and small cell lung cancer (SCLC), include types such as pulmonary sarcomatoid carcinoma, adenoid cystic carcinoma, and carcinoid tumours, among others. 

Some of the rare lung cancer challenges include:
 

1. Delayed diagnosis

• Non-specific symptoms: Rare lung cancers often present with symptoms that can be mistaken for other, more common conditions, such as chronic cough, shortness of breath, or chest pain. This leads to delayed or mis-diagnosis.
   
• Difficulty in diagnosis: Diagnosis of rare lung cancer may require more specialised imaging techniques and pathology evaluations. Also, genetic testing and molecular profiling, such as next-generation sequencing, are useful for detecting specific genetic mutations or biomarkers. However, these tests may not always be easily accessible or commonly used in routine care, which can lead to delays in diagnosis.
   

2. Limited knowledge and expertise
 

• Lack of expertise: Because rare lung cancers are not common, healthcare providers may have limited experience in diagnosing and treating them. This can lead to suboptimal care or delays in starting appropriate treatment.
   
• Limited research: There are fewer clinical trials for rare lung cancer compared to more common types, resulting in fewer treatment guidelines, clinical trials, and evidence-based recommendations.

3. Treatment options
 

• Few targeted therapies: For rare lung cancers, targeted therapies and immunotherapies that are available for more common types of lung cancer (e.g., for EGFR mutations or ALK rearrangements) may not be applicable, leaving limited treatment options.

• Standardised treatment protocols: Rare lung cancers often lack established treatment protocols, requiring highly individualised care. A combination of surgery, chemotherapy, and radiation may be used, but its effectiveness can vary. Clinical trials for rare lung cancer may offer access to newer therapies, potentially improving outcomes.
   

4. Prognosis and survival
 

• Unpredictable outcomes: Rare lung cancers often have unpredictable clinical courses. For some, early-stage diagnosis and surgery may offer a chance for a cure, while for others, the disease may be more aggressive or harder to treat.
   
• Lack of prognostic tools: Because these cancers are less studied, prognostic tools such as biomarkers or survival prediction models may not be well developed.
   

5. Psychological and emotional impact
 

• Isolation: Patients with rare lung cancers may feel isolated because their condition is not widely understood. Support groups and patient advocacy resources may be less available compared to those for more common cancers.
   
• Uncertainty: Due to the rarity of the disease, patients may experience uncertainty about their diagnosis and treatment options, which can contribute to anxiety and emotional distress.
   

6. Access to care
 

• Referral to specialists: Because rare lung cancers are so uncommon, patients may need to be referred to specialised centres or institutions with expertise in rare cancers. Travel, insurance coverage, and logistical barriers may limit access to the best care.
   
• Multidisciplinary approach: Rare cancers often require a multidisciplinary approach involving pulmonologists, oncologists, pathologists, and radiologists. Coordinating care can be complex, especially when specialists are located in different institutions.
   

7. Lack of awareness
 

• Public awareness: Rare lung cancers may not be as well known to the general public, meaning that awareness about the disease and early warning signs may be low. This can affect early detection and advocacy for funding for research and patient support services.
   
• Awareness among medical professionals: General healthcare providers may have limited familiarity with the signs, symptoms, and treatment options for rare lung cancers, which could delay diagnosis or lead to under-recognition of the disease.
   

8. Financial burden
 

• High costs: Rare lung cancers may require more complex or specialised treatments that are not always covered by insurance. The cost of treatments, travel for specialised care, and the potential need for experimental therapies or participation in clinical trials can impose a significant financial burden on patients and families.

Financial constraints standing as a barrier? MrMed can help you! Through our Patient Assistance Program, in partnership with pharma companies, we provide various discounts and offers to ease the financial strain.
 

How to tackle the rare cancer challenges? 
 

Tackling the challenges of rare cancers requires a well-rounded approach that addresses medical, emotional, financial, and logistical difficulties.

Here are some key strategies to help overcome rare cancer challenges:
 

1. Early diagnosis & awareness
 

• Increase awareness: Raising awareness about rare cancer symptoms can help both patients and doctors detect them earlier.
   
• Specialised testing: Regular screenings and tests for high-risk individuals can improve early detection and treatment outcomes.
   

2. Access to specialist care
 

• Referral to experts: Patients should be referred to specialists who have experience treating rare cancers to ensure they receive the best care.
   
• Telemedicine: Online consultations with specialists can help patients access expert care without the need to travel long distances.
   
• Access to super speciality medicine: Patients should have access to super-specialist medications that are not commonly available, including targeted therapies, orphan drugs, or experimental treatments. These medicines are often crucial for rare cancers and can provide more effective options when standard treatments are not suitable. Access to such specialised drugs is essential for improving outcomes in these challenging cases.
   

Super speciality medicines with up to 85% discounts are now available in 3000+ cities!  Order now at MrMed.in
 

3. Government and Policy Support
 

• Government legislation: Policy changes that increase funding for rare cancer research, raise awareness and ensure insurance coverage can make a significant difference.
   
• The Government of India has launched the National Policy for Rare Diseases (NPRD), 2021, for the treatment of rare disease patients. Financial assistance up to Rs. 50 lakhs are provided to patients suffering from any category of rare diseases and getting treatment in any of the Centre of Excellence (CoE) identified under NPRD-2021.
   
• Orphan drug programs: Government incentives for the development of medications for rare cancers can encourage pharmaceutical companies to invest in these treatments.
   

4. Multidisciplinary Care
 

• Team-based treatment: A team of specialists, including oncologists, radiologists, and pathologists, should work together to create personalised treatment plans for each patient.
   
• Tailored treatments: Personalised medicine, based on genetic and molecular testing, can improve the effectiveness of treatments for rare cancers.
   

5. Emotional & psychological support
 

• Counselling and support groups: Connecting patients with support groups or offering counselling services can help manage the emotional burden of rare cancer diagnoses.
   
• Support for caregivers: Family members and caregivers also need emotional and practical support to help them cope with the demands of caring for someone with a rare cancer.
   

6. Encouraging research
 

• Clinical trials: Participating in clinical trials provides patients access to new and potentially more effective treatments while contributing to the development of better therapies for rare cancers. Some trials may even offer free medications and cover treatment costs, easing the financial burden on patients.
   
• Data sharing: Collaboration among research institutions helps build comprehensive databases, which can accelerate progress in rare cancer treatments.

How to enroll in clinical trials in India?
 

To enroll in clinical trials in India, follow these steps:

1. Consult your doctor: Ask if there are any suitable clinical trial opportunities for your condition.

2. Search for trials: Explore options through the Clinical Trials Registry – India (CTRI).

3. Review eligibility: Understand the inclusion/exclusion criteria for each trial.

4. Informed consent: If eligible, go through the informed consent process, where you’ll be briefed on the trial details.

5. Register and participate: Complete the registration and follow the trial’s procedures and follow-up schedule.
 

Frequently Asked Questions
 

1. What is the rarest form of lung cancer?
 

The rarest form of lung cancer is pulmonary sarcomatoid carcinoma, a highly aggressive subtype that accounts for less than 1% of all lung cancers.
 

2. Are rare lung cancers harder to treat?
 

Yes, rare lung cancers are generally harder to treat due to the lack of established treatment protocols and limited research. These cancers often do not respond well to standard therapies, requiring more individualised and experimental treatment approaches.
 

3. Are rare lung cancers hereditary?
 

Most rare lung cancers are not hereditary, but genetic mutations can play a role in their development. Family history may increase the risk, though it is not a primary factor in most cases.
 

4. What are the barriers to rare lung cancer diagnosis?
 

Barriers to rare lung cancer diagnosis include non-specific symptoms that mimic common respiratory conditions, leading to mis-diagnosis or delays. Limited awareness among healthcare providers and a lack of specialised testing further complicate early detection. Additionally, patients may not have access to advanced diagnostic tools or expert centres.
 

Wrapping up
 

Patients with rare lung cancers face numerous challenges, from delayed diagnosis to limited treatment options. However, advancements in clinical trials and personalised medicine provide hope. 
 

With early diagnosis, specialised care, and active participation in research, patients can improve their chances of success. Staying informed and advocating for themselves can lead to better treatment and outcomes.
 

To know more about lung cancer and related concerns, read our other articles:
 

1. Herbal remedies for lung cancer

2. Top 10 facts about lung cancer

3. Myths & facts about lung cancer

4. Use of 3D robotic motion phantom in lung cancer treatment