PROJECT ISR

Submitted By:

Prakruti Shah

Admission No:

HPGD/JA15/0035

Social Cause:

Cancer Patient Support And Awareness

NGO:

Jeet Association For Support To Cancer

Patients (JASCAP)

Prin. L.N. Welingkar Institute Of

Management Development And
Research

Submitted on 31st March 2016

DECLARATION

I, Prakruti Shah, student of Prin. L. N Welingkar Institute of Management

Development & Research, with admission no. HPGD/JA15/0035, hereby declare that
I have completed this project ISR- Cancer Patient Support And Awareness, NGO
JASCAP, in the third semester. The information submitted is true and original to the
best of my knowledge

Table of Contents
SR NO

Title

Page No

Executive Summary

II

Why Cancer & Jascap for Isr Project?

III

Cancer Overview

06 -11

Causes of Cancer

What Are the Risk Factors for Cancer?

Cancer Prevention

Cancer Treatment

10

5
IV

Side Effects of Cancer Treatment

Cancer Scenario in India

11
12-25

Types of Cancer Prevalent in India

13

Geography of Cancer

15

Cancer Causes in India

16

Cancer Management a Challenge in India

20

Strategies for Cancer Control

22

Cancer Care Facilities in India

25

Creation of Community Modules for Effective Treatment and Rehabilitation

26

VI

Challenges Faced by Cancer Patients, Caregivers & Families in India

27-30

VII
1

Financial

27

Awareness and Information

29

Psychological

30

JASCAP
Mission

31-39
31

The Tragic Loss A Strong Motivation

32

JASCAP Logo

34

JASCAPs Activities

35

People Involved

36

The Bookstore

37

Cancer Info Center

38

The Information War

39

VIII

References

40

EXECUTIVE SUMMARY
The project attempts to create awareness about Individual Social responsibilities
(ISR) and promotes engagement of individual with the community. It makes the
individual a campaigner, volunteer and activist of the cause that he/she picks up. The
project study also helps in understanding how a non-profit organization operates and
how the finances and other resources are managed.
I have selected this topic due to the personal experience of cancer treatment of my
mother and the struggle that my family faced in terms of right information, treatment
plan and resources. While my mother lost her job during the cancer treatment phase,
one of the family member had to give up her career to take care of my mother. We
struggled even though we did not belong to the financially weaker or for lack of
education, one can only imagine the state of a poor, uneducated family who has to
deal with cancer of a near and dear one.
Cancer is a disease which does not discriminate on the basis of wealth, gender, age,
race, sex or nationality. We have a responsibility to sustain and enrich the lives,
livelihood and education of the poor and not-so-educated people suffering from the
dreaded disease of cancer. It also includes the responsibility to spread the wealth of
information pertaining to cancer prevention, its diagnosis and management in simple
formats in as many languages as possible to the diaspora of India.
JASCAP with its pro-active and knowledge-based approach, is committed to
providing educational material and advice pertaining to cancer, its diagnosis and its
management to cancer patients, their families and caregivers. JASCAPs main
activities range from providing cancer related information (booklets and audio-visual
material) in various Indian languages such as Hindi, Marathi, Kannada, Gujarati,
Bengali, Tamil, and Malayalam and in English to bestowing financial, emotional and
social support to cancer patients and their families

Why Cancer & JASCAP for ISR Project?

In the year 1999 my mother was diagnosed with ovarian cancer. She hid the fact from the family as
she feared the expenditure would be exorbitant compared to our means. Moreover, my parents had
never taken a medical insurance due to lack of awareness.
However, given the disease, she could not hide it longer as her symptoms became severe. That is
when she told us about the diagnosis a year back. And as she had feared, the expenditure of the
surgery and treatment eroded of all their savings and then more.
During that period, the biggest challenge we faced was for correct information. The doctors gave
only limited information, restricted to patient care. We had multiple opinions from different
oncologists. And it also meant getting the same diagnostics tests done several times over, increasing
the over cost for treatment.
The access to information back in 1999 was not easy. Personal computer and laptops were still the
luxury items and access to internet was costly. Therefore even if available, we could not get any
information online about the disease or the financial help available from various sources. There was
a lot of unnecessary stress due to lack of information. We were not updated with alternate treatment
methods nor were the side effects explained. It meant that we worried and worried and worried.
Anyways, the hard times passed. I as an Executive Assistant to President of my company handled
the responsibility of CSR for the company. That is when I met Mr. Ganpathy, the CEO at JASCAP.
I immediately took up the project when he explained what JASCAP does and how they do it. I
could easily see that JASCAP worked closely with the patients on ground and unlike other NGOs
the donated amount was spent 100% on the cause. JASCAP has a very small administration cost as
most of the work is done through volunteers and there is no cost on advertisements etc for his
organisation
I myself cannot afford to help even a single patients treatment, therefore, I decided to move as a
group. I got about 200 colleagues, friends and relatives involved with the project and together we
managed to donate 1.5 lakhs to JASCAP. Moreover, a few of these people became regular donors.
Above all, all these people are now spreading information about the available material in so many
languages. The best of all, I could get my family involved in translating the available English
material to Gujarati, our mother tongue.

Cancer Overview
The term cancer refers to a group of diseases which share similar characteristics. Cancer can affect
all living cells in the body, at all ages and in both genders. The causation is multifactorial and the
disease process differs at different sites.
About half of all men and one-third of all women will develop cancer during their lifetime.
Causes of Cancer
Some cancers are caused by things people do or expose themselves to. For example, tobacco use
can cause cancer of the lungs, mouth, throat, bladder, kidneys, and many other organs.
Spending a lot of time in the sun without protection can cause skin cancer. Melanoma is a very
serious form of skin cancer linked to sunlight and tanning bed exposure.
Radiation can cause cancer. For instance, people exposed to nuclear fallout have a higher cancer
risk than those who were not exposed. Rarely, radiation treatment for one type of cancer can cause
another cancer to grow many years later.
Certain chemicals have been linked to cancer, too. Being exposed to or working with them can
increase a persons risk of cancer. BPA found in our everyday plastic items is a major cause of
cancer.
Genes that run in families, about 5% to 10% of all cancers are linked to genes that are inherited
from parents.
No one knows the exact cause of most cases of cancer. We know that certain changes in our cells
can cause cancer to start, but we dont yet know exactly how it all happens.

What are the risk factors for cancer?

A risk factor is anything linked to your chance of getting a disease, such as cancer. Different cancers
have different risk factors. There are different kinds of risk factors. Some, like a persons age or
race, cant be changed. Others are linked to cancer-causing factors in the environment. Still others
are related to personal actions, such as smoking. Some factors influence risk more than others, and a
persons risk for cancer can change over time, due to factors such as aging or lifestyle.
Some of the major cancer risk factors that can be controlled:

Tobacco use
Diet
Physical activity
Weight
Alcohol use
Sun exposure
Environmental exposures, such as radon, lead, and asbestos
Exposure to infections like hepatitis, HPV, and HIV

Overall, environmental factors, defined broadly to include tobacco use, diet, obesity, sun exposure,
and infectious diseases, as well as chemicals and radiation cause an estimated 75% to 80% of all
cancer cases.

Cancer Prevention
7

Theres no sure way to prevent cancer, but there are things you can do to help reduce your chances
of getting it.
Tobacco - Many cancers might be prevented if people didnt use tobacco. Studies clearly show that
ex-smokers have less cancer than people who continue to smoke. Its best to never use tobacco at
all and to stay away from second hand smoke.
Alcohol - Drinking alcohol is linked to a higher risk of certain types of cancer. Ethanol is the type
of alcohol found in all alcoholic drinks, whether it is beer, wine, distilled spirits. Overall, its the
amount of alcohol thats drunk over time, not the type of drink, which seems to be the most
important factor in raising cancer risk.
Drinking and smoking - The combined use of alcohol and tobacco raises the risk of mouth, throat,
voice box, and esophagus cancer far more than the effects of either one alone.
Ultraviolet (UV) rays and sunlight - You can lower your chances of getting skin cancer by

Staying out of the sun between the hours of 10 a.m. and 4 p.m.
Wearing a hat, shirt, and sunglasses when you are in the sun
Using sunscreen with a sun protection factor (SPF) of 30 or higher
Not using tanning beds or sun lamps

Diet - We know that our diet (what we eat or dont eat) is linked to some types of cancer, but the
exact reasons are not yet clear. The best information we have suggests a lower cancer risk for
people who:

Eat a lot of fresh vegetables and fruits (at least 2 cups a day)
Choose whole grains rather than refined grains and sugars
Limit red meats (beef, pork, and lamb)
Limit processed meats (such as bacon, deli meats, and hot dogs)
Choose foods in amounts that help them get to and stay at a healthy weight
Limit alcohol intake to 1 alcoholic drink a day or less for women and 2 or less for men

Vaccines that reduce cancer risk - We now know that some cancers are caused by infections,
mostly viruses. One virus thats clearly linked to cancer is the human papilloma virus (HPV). Its
been linked to cervical cancer, anal cancer, many genital cancers, and even head and neck cancers.

There are 2 vaccines to help prevent HPV infections, so they should help prevent the cancers caused
by HPV.
But most adults have already been infected with HPV, and the vaccines havent been proven to help
people who already have HPV. Still, young people who are not yet sexually active should have a
lower future cancer risk if they get one of the vaccines before theyre exposed to HPV.
The American Cancer Society recommends them for girls aged 11 and 12, though they can be given
to girls and boys as young as 9.
Early detection - To find cancer early, while its small and before it has spread, adults should have
regular tests called cancer screening tests. These tests help doctors find common cancers before they
cause symptoms. For example, regular screening can find cancers of the breast, colon, rectum,
cervix, mouth, and skin early. If cancer is found early, it can be easier to treat. Survival also tends to
be longer for those with early cancer.

Cancer Treatment
Surgery, chemotherapy, and radiation are the 3 main types of cancer treatment. A person with cancer
may have any or all of these treatments. In choosing a treatment plan, the most important factors
9

are generally the type of cancer and the stage (amount) of the cancer. Other factors to consider
include the persons overall health, the likely side effects of the treatment, and the probability of
curing the cancer, controlling it to extend life, or relieving symptoms.
Surgery
Surgery is often the first treatment used if the cancer can be removed from the body. Sometimes
only part of the cancer can be removed. Radiation or chemotherapy might be used to shrink the
cancer before or after surgery.
Chemotherapy
Doctors use chemotherapy or chemo drugs to kill cancer cells. Usually, the drugs are given
intravenously (IV or into a vein) or taken by mouth. Chemo drugs travel throughout the body in the
bloodstream. They can reach cancer cells that may have spread away from the tumor.
Radiation therapy
Radiation therapy is treatment with high energy rays (such as x-rays) to kill or shrink cancer cells.
The radiation may come from outside the body, called external radiation, or from radioactive
materials placed right into the tumor (internal or implant radiation). Getting external radiation is a
lot like getting an x-ray. Its doesnt hurt, but it can cause side effects.
Other types of cancer treatment
Other kinds of treatment you might hear about include targeted therapy, stem cell or bone marrow
transplant, and immunotherapy. Hormone therapy is another type of treatment thats sometimes
used to treat certain kinds of prostate and breast cancers.

Side Effects of Cancer Treatment

The type of treatment a person gets depends on the type and stage (extent) of the cancer, their age
and overall health, their medical history, and their personal preferences. Each drug or treatment plan
10

has different side effects. Its hard to predict what side effects a person will have; even when people
get the same treatment they can have different side effects. Some can be severe and others fairly
mild. Its true that some people have a tough time with cancer treatment, but many others manage
quite well. And most cancer treatment side effects can be treated.
Chemo side effects
Short-term (and often treatable) side effects of chemo can include things like nausea and vomiting,
appetite loss, hair loss, and mouth sores. Because chemo can damage the blood-making cells in the
bone marrow, patients may have low blood cell counts. This can lead to:

Higher risk of infection (from a shortage of white blood cells)

Bleeding or bruising after minor cuts or injuries (from a shortage of blood platelets)
Anemia (from low red blood cell counts), which can cause tiredness, shortness of breath,
pale skin, and other symptoms

Cancer care teams work carefully with patients to manage the side effects of chemo. Most chemo
side effects go away after treatment ends. For example, hair lost during treatment grows back after
treatment is over. In the meantime, most patients are able to use wigs, scarves, or hats to cover,
warm, or protect their heads.
Radiation side effects
Radiation treatments are much like x-rays and are not painful. The most common side effects are
skin irritation and fatigue. Fatigue is a feeling of extreme tiredness and low energy that does not get
better with rest. It often lasts for many weeks after treatment ends. Other side effects can happen,
too, depending on what part of the body is being treated.

Cancer Scenario in India

1,300 Die of Cancer Every Day in India
NDTV NEWS

11

Cancer incidence to rise five-fold in India by 2025?

TIMES OF INDIA
With a million new cases being reported every year, cancer seems to be tightening its grip on India.
Prevalence of cancer in India is estimated to be 3.9 million people with reported incidence of 1.1
million in 2015. This is however a conservative estimate, as the real incidence of cancer is expected
to be at least 1.5 to 2 times higher at 1.6-2.2 million, as suggested by data from large screening
studies and low coverage of Indian cancer registries. Cancer is the second most common disease in
India responsible for maximum mortality with about 0.3 million deaths per year. This is owing to
the poor availability of prevention, diagnosis and treatment of the disease.
All types of cancers have been reported in Indian population including the cancers of skin, lungs,
breast, rectum, stomach, prostate, liver, cervix, esophagus, bladder, blood, mouth etc. According to
medical professionals, lung and oral cancers were the most common among men while cervix and
breast cancer were striking more and more women.
The causes of such high incidence rates of these cancers may be both internal (genetic, mutations,
hormonal, poor immune conditions) and external or environmental factors (food habits,
industrialization, over growth of population, social etc.).

Types of Cancer Prevalent in India

12

A. Lung cancer
It was observed that lung cancer was rare in the beginning of the last century, But, nowadays, it has
become almost epidemic resulting in greater number of deaths than those caused by colorectal,
breast and prostate cancers But, nowadays, it has become almost epidemic resulting in greater
number of deaths than those caused by colorectal, breast and prostate cancers. The most common
forms of malignancies in males during in Mumbai, Delhi, and Bhopal were cancers of trachea,
bronchi and lungs due to different levels of environmental pollution, food habits, living style etc.
B. Breast cancer
Breast cancer is the most common malignancy type diagnosed in women in developed countries and
the second most common type diagnosed in developing countries. Breast cancer has been described
as an alarmingly health problem in India. Over the years, the incidences of breast cancer in India
have steadily increased and as many as 100,000 new patients are being detected every year.
C. Stomach cancer
Stomach is one of the most essential organs of human body, which frequently gets cancer and stands
at fifth position. South East Asian countries including India were reported to have lower rates of
stomach cancers. On the basis of the prevalence of stomach cancer Mizoram occupied the first
position among Indian states. Moreover, this state comprised fifth position globally.

D. Gall bladder cancer

13

Gall Bladder Cancer (GBC) was first diagnosed during laparotomy or laparoscopy procedures,
which were expected to confirm the presence of benign gall bladder diseases. Almost 2% gall stone
patients were diagnosed with GBC. Gall bladder cancer is the most common abdominal malignancy
in northern parts of the country. Gallstones associated with gallbladder carcinoma have been
reported in 70-90% of patients with GBC.
E. Cervical cancer
The most susceptible site of cancer in women in the developing countries is cervix. During last few
decades, it has been observed that the number of cervical cancer cases in women has decreased in
India.
F. Oral cancer
Indian Council of Medical Research (ICMR) reported that oral cancer is very common in India.
There has been a substantial increase in the incidences of oral sub-mucous fibrosis; especially
among youngsters; which further increased the incidence of the oral cancer. Presently, oral cancer is
the fourth common type of malignancy after lung, stomach and liver in males. It is the fifth
common cancer after cervix, breast, stomach and lung cancer in females.
G. Miscellaneous cancers
Besides these, some other sorts of cancers have been observed in India. The incidence of esophageal
cancer in India is moderately high; associated with diets and lifestyles. Colorectal cancer is a
disease that usually affects individuals of age 50 years or more. Head and Neck Neoplasia (HNN)
are major forms of cancers in India, which account for nearly 23 and 6% in males and females,
respectively.

14

15

Cancer causes in India

The cancer causes in India are almost same as in other parts of the world. The chemical, biological
and other environmental identities are responsible for uncontrolled and unorganized proliferation of
cells (carcinogens). Basically, under special circumstances carcinogens interact with DNA of the
normal cells resulting into a series of complex multistep processes responsible for uncontrolled cell
proliferation or tumors (Carmaeia, 1993). The causes for cancers can be both either internal factors
like inherited mutations, hormones, and immune conditions or environmental factors such as
tobacco, diet, radiation, and other infectious agents. A significant variation of cancer has been
reported due to life styles and food habits (Helbock et al, 1998). For example, Asians have 25 and
10 times lower incidences of prostate and breast cancers, respectively, as compared to Western
countries which may be attributed to comparatively simple life styles adopted by Asians, and safe

16

sexual practices. It is interesting to mention here that the rates of these cancer incidences increase
substantially when Asians migrate to the Western countries; indicating a clear relationship of
carcinogenesis with food habits and living styles.

A. Dietary habits
Our survey dictates us that improper diet is one of the main causes of cancer prevalence in India.
About 70% colorectal cancer cases are believed to be due to imbalanced diet. The role of diet
towards cancer varies greatly according to the type of cancers. As per the International correlation
studies, overwhelming positive associations between dietary fat, red meat consumption and
colorectal cancer incidence and mortality have been observed. The heavy consumption of red meat
is the main cause of several cancers including gastrointestinal tract and colorectal, prostate, bladder,
breast, gastric, and oral cancers.
Most probably, it is due to the production of heterocyclic amines (most potential carcinogens)
during cooking of red meat. Pyrolysates are produced by charcoal cooking or smoke curing of
meat, which exert a cancerous

effect on our body cells. Almost 20% of total mutagencity of fried

beef is due to the presence of PhIP (2-amino-1-methyl-6-phenyl-imidazo [4, 5-b] pyridine), which is
the most abundant mutagen by mass in cooked beef. Food kept in plastic containers turns out to be
carcinogenic because bios-phenol from the plastic containers gets dissolved and migrates into the
food; resulting into the risk of breast and prostate cancers. A low intake of fresh fruits and high
cooking temperatures in Indian dishes may account for low levels of vitamin C; resulting into
higher risks of stomach, mouth, pharyngeal, esophageal.
Vegetarianism; practiced by a large population of Indians (particularly Hindus); has been associated
with lower risks of prostate cancer. Beans, chickpeas and lentils are the principal components of
vegetarian diet- a rich source of proteins; and pulses have been significantly associated with
reductions in cancer. The Indian diet containing adequate quantities of vegetables, fruits, and fibre
rich grains provides protection against the increased risk of colon and breast cancers.
B. Tobacco

17

The consumption of tobacco is the leading cause of cancers in India. regular use of tobacco via
smoking, chewing, snuffing etc. The various cancers produced by the use of tobacco are of oral
cavity, pharynx, esophagus, larynx, lungs and urinary bladder. Smoking is the most notorious factor
for the causation of lung cancer. Exceptionally high incidences of oral cancer in some parts of Uttar
Pradesh and Gujarat are due to the consumption of Pan Masala, Dohra and Zarda. Similarly, the
consumption of Beetal, Nut, Pan Masala, Opium and Bhang (leave and flower powder of female
cannabis plant) has been recognized as the major cause of mouth cancer in Rajasthan.
C. Alcohol
Alcohol consumption has been considered as one of the major causes of colorectal cancer as per a
recent monograph of WHO. Alcohol consumption has been considered as one of the major causes
of colorectal cancer as per a recent monograph of WHO. However, chronic alcohol consumption
has been found to be a risk factor for the cancers of the upper respiratory and digestive tracts,
including oral cavity, hypopharynx, larynx and esophagus as well as liver, pancreas, mouth and
breast cancers. The mechanism of carcinogenesis due to alcohol consumption is not exactly known,
however, it is thought that ethanol being a co-carcinogen might play a crucial role in the
carcinogenesis (Poschl et al, 2004). The metabolic products of ethanol are acetaldehyde and free
radicals. The free radicals are responsible for alcohol assisted carcinogenesis through their binding
to DNA and proteins, which destroy foliate leading to secondary hyper proliferation (Anand et al,
2000).
D. Radiation
In the developed and developing countries, the radiations are also notorious carcinogens. About
10% cancer occurrence is due to radiation effect, both ionizing and non-ionizing (Belpomme et al.
2007). The major sources of radiations are radioactive compounds, ultraviolet (UV) and pulsed
electromagnetic fields. The main series of cancers induced by exposure to the adequate doses of the
carcinogenic radiations include thyroid, skin, leukemia, lymphoma, lung and breast carcinomas.
The underground testing of nuclear weapons may be the major cause of digestive system, liver and
kidney cancers, as radiations have been reported in ground water of the nuclear weapon testing area.
E. Miscellaneous pollutants
It is estimated that about 90% cancer is owing to the environmental contaminants. The risk of lung
cancers is increased by a number of outdoor pollutants such as poly aromatic hydrocarbons. Long
term exposure to PAHs (polyaromatic hydrocarbons) in air was found to increase the risk of deaths
18

associated with lung cancer. Indoor environmental pollutants such as volatile organic compounds
and pesticides increase the risk of leukemia and lymphoma, brain tumors, Wilms tumors, Ewings
sarcoma and germ cell tumors. An increased risk of cancer has been observed in people using
chlorinated water for drinking purposes for a long time. N-Nitroso compounds (mutagenic in
nature) are formed from nitrates present in drinking water and increase the risk of lymphoma,
leukemia, and colorectal cancer and bladder cancers. The low socio-economic conditions related to
poor hygiene, poor diet or infections of viral origin are also responsible for various types of cancers.

19

20

Cancer Management A Challenge In India

Cancer prevention
There is no uniform cancer prevention strategy for the entire country. Awareness programmes have
been undertaken in a few places, but there is no uniform standardized information, education and
communication (IEC) strategy for cancer prevention. There is no education on risk factors, early
warning signals and their management. Cancer screening is not practised in an organized fashion in
any part of India. There are sporadic attempts at opportunistic interventions and small-scale
research studies for field interventions.
Infrastructure for diagnosis
Diagnostic infrastructure in the country is limited. There are many districts in the country which do
not have a pathologist and pathology/cytology services, which are crucial for diagnosing cancer.
Financial and geographic constraints, and lack of manpower have contributed to the urban
concentration of facilities. An un-estimated number of cancers diagnosed in the population are not
treated. Untreated patients are likely to demand more resources from society.

21

Cancer treatment
Treatment facilities are also mostly limited to urban areas of the country. There are no uniform
protocols for management, and the availability and affordability of cancer treatment shows wide
disparities. The majority of patients with cancer present to a cancer treatment centre in late stages of
the disease (80% are advanced) and this adds to the already high morbidity, mortality and
expenditure. Treatment results are about 20% less than what is observed for similar conditions in
more developed countries, mostly due to late diagnosis and inappropriate treatment. Paediatric
cancers are highly curable but this has not been achieved in India due to lack of access to quality
care and lack of support systems.
Pain relief and palliative care
Oral morphine is the mainstay for cancer pain relief and is still not widely available in the country.
There is a serious limitation of manpower for providing palliative care.
Finances
The funds for the cancer programme are mainly from the Government and needs to be augmented.
Private initiatives are few and are unlikely to cater to a large population across different
socioeconomic strata, as it is often not a financially viable venture.
Coordination
All elements of cancer control, from surveillance to palliative care, are not linked and coordinated.

"The biggest problem behind the rising numbers is

that most Indians don't suspect they may have
cancer. This exceptionally poor 'suspicion index'
leads to delayed diagnosis and treatment.
- Dr Harit Chaturvedi, chief of Max Institute of Oncology, Delhi, as well as Indian
Cancer Society.

22

Strategies for cancer control

A number of strategies can be considered for the control of cancer. An activity should only be
introduced if data that strongly support its effectiveness are available, either from research
programmes or cancer control programmes elsewhere.
Prevention
At least 30% of the future cancer burden is potentially preventable by tobacco control. Spread of
tobacco addiction, promoted by commercial interests in the world, is responsible for the lung cancer
epidemic that is already taking hundreds of thousands of lives annually; unless checked, cigarettes
will in the next decade cause more than 1 crore deaths from cancer.
Action is also possible on dietary modification. Evidence that excessive fat in the diet may induce
some cancers and that whole grains, vegetables and fruits are protective has accumulated in recent
years. The same diet that lowers the risk of cardiovascular disease may inhibit the development of
diet-associated cancers.
Excessive alcohol consumption increases the risk of cancers of the oral cavity, pharynx and
oesophagus; it is also strongly associated with cancer of the liver. Infections with certain viruses are
associated with cancer; for example, liver cancer and the hepatitis B virus, and cancer of the cervix
and the human papillomavirus. Hepatitis B vaccination can be undertaken in regions where the
prevalence of chronic carriers exceeds 10%.
Early detection
If cancer can be detected early, treatment may be curative. One means to that end is educating
people regarding early signs of the disease: lumps, sores that do not heal promptly, abnormal
bleeding, and persistent indigestion or hoarseness. Medical attention should be sought when these
occur. Early diagnosis of cancers that are curable if detected early (cervix, breast, mouth) can be
promoted in India using public education and training of primary health care workers. A second
approach to early cancer detection is through population screening; namely, the identification of
people with asymptomatic disease by applying simple tests. Cancer screening should be applied
only when its effectiveness has been demonstrated; programmes should be introduced only when
23

there is adequate manpower to perform the tests, with mechanisms to achieve adequate population
coverage, facilities for diagnosis, treatment and follow-up of individuals with abnormal test results,
and when the extent of disease in the population justifies the effort and cost.
Currently, screening can only be advocated for cancers of the cervix and breast. It is important that
such programmes concentrate on those at greatest risk of invasive cancer, for cervix cancer women
aged 3560 years, for breast cancer women aged 40 years or more (but for mammography
programmes those aged 5069 years).
Treatment
The primary objectives of cancer treatment are cure, prolongation of useful life and improvement in
the quality of survival. Mechanisms should be set up to decide on guidelines for integrating
treatment resources with early diagnosis and screening programmes, and for providing therapeutic
standards for the most important cancers in India.
Care for cancer patients typically starts with recognition or suspicion of the disease by the patient
and primary health care worker. Specialized services for diagnosis and treatment, and referral, if
appropriate, to a centre for cancer treatment comprise the next element of the system. Curative
treatment involves surgery, radiation, chemotherapy, hormone therapy or some combination of these
modalities. For some kinds of cancer, including those affecting the uterine corpus, testis, melanoma
and female breast, state-of-the-art therapy yields a 75% or greater 5-year survival rate.
On the other hand, survival for patients with cancers of pancreas, liver, stomach and lung is less
than 15%. Though simple forms of cancer treatment have to be provided at a conservative level in
medical colleges and district level hospitals, the high technology required for some forms of cancer
therapy heighten the desirability of concentrating such treatment in a few places in the country.
Major reliance on treatment as a cancer control strategy, however, favours an expensive and narrow
approach to the problem. High technology for cancer treatment imposes a heavy financial
investment, tends to select patients inequitably, and detracts from appropriate emphasis on
prevention. In the developing as well as developed world, focus on treatment as the main thrust
against cancer is a poor strategy.

24

Palliative care
Having a good quality of life is a highly significant aim for patients with cancer, whether or not
cure is possible. Cancer pain relief and palliative care are important and integral parts of cancer
care. Relatively simple and inexpensive treatment to control pain should be available throughout the
country as a priority. Palliative therapy and care, including symptom control and pain relief, will be
important for years to come, especially in developing countries, because of the large number of
patients for whom curative therapy is not possible. Guidelines for cancer pain relief have been
produced and are available from the World Health Organization (WHO). Actions to ensure the
availability of oral morphine through amendment of regulations that might inhibit the use of oral
morphine for cancer pain relief, and training of health professionals in palliative care, are critical.

Cancer patients without the right resources at their disposal

find beating the disease doubly hard. Some refuse treatment
due to lack of information, while others are under-diagnosed
or abandoned by family.

The main challenge that we face is lack of

education and knowledge amongst the masses
about cancer
-Dr (Prof) Santanu Chaudhuri, Chairman Radiation Oncology, Nayati Healthcare-

25

Cancer Care Facilities In India

State/Government Sponsored
In the overall political scene in India, policies for health promotion and education are unfortunately
accorded a low priority; nonetheless, the Ministry of Health provides health care efforts in the state
by supporting large teaching hospitals, dispensaries and small clinics in the smaller towns and rural
areas. Primary health care workers and many of the dispensaries and small clinics are involved in
preventive immunization and other basic health matters. Nearly 95% of the population in the rural
area, 70% in smaller towns and 50% in the major cities avail themselves of these state-sponsored
health care facilities with low cost or free of cost.
Cancer treatment facilities supported totally by the government are available in major cities such as
Delhi, although totally inadequate for the needs. The Tata Memorial Centre, the largest
comprehensive cancer centre in Bombay, is supported totally by the Department of Atomic Energy,
Government of India. Many of these institutional facilities are available at low cost or no cost for
the poor and in a private capacity for those who can afford it.
The Government of India also supports some of the regional cancer centres present across the
country by a small amount of annual funding. It would be fair to state that despite financial
restraints, the state and the government are aware of the increasing cancer problem and are trying
their best to allocate a reasonable part of the budget for health to cancer control efforts.

Private/Corporate Sector
The increasingly expensive technology for the diagnosis and treatment of cancer and the possibility
of profits in professionally run hospitals have led a large number of private general hospitals and
specialized cancer hospitals to become involved in cancer care in the private sector. Most such
facilities exist in large metropolitan cities and a few in larger towns. Needless to say, the demand far
outstrips the supply and many more cancer facilities need to be created to care for the increasing
number of cancer patients in coming decades. A significant number of private cancer societies exist
in various states which are mainly concerned with public education and creating cancer awareness.
These societies depend on private and public philanthropy for their sustenance.
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Creation Of Community Modules For

Effective Treatment And Rehabilitation
A major experiment was initiated in 1982 under the aegis of the Tata Memorial Centre to create a
rural community module for cancer care which could be replicated for any developing country with
resource restraints. It involved a phased and gradual stepwise programme over a period of years.
Currently, 20 years after the initiation of the project, this outreach satellite centre is serving the
needs of the population, has strongly promoted cancer education and has become a major selfsupporting centre for cancer control. The important components of the project are as follows:
1) Initiation of an out-patient department with minimal diagnostic facilities such as clinical
examination, routine radiology and routine laboratory.
2) Intensive public education, particularly about prevention and early diagnosis, and identifying
high-risk populations.
3) Spreading cancer knowledge through camps and by mobile vans.
4) Creating facilities for treatment with surgery, radiotherapy and chemotherapy.
5) Introducing more sophisticated diagnostic facilities of imaging diagnosis and advanced
laboratory tests.
6) Initiation of rural cancer registry and division of epidemiology.
7) Organizing fully fledged facilities for radiotherapy, chemotherapy and advanced surgical
techniques.
8) Data collection proving that down staging of cervical and head and neck cancers could be
achieved. This was possible 11 years after the initiation of the project and was published in 1994
Apart from the catalytic action of the Tata Memorial Centre through professional and advisory
inputs, the most important contributory factor for the success of this project has been effective
public education, which has led to awareness and gradually increasing compliance of the
population. The WHO has taken note of this module as a model, which can be implemented at a low
cost with appropriate technology. This experiment has proved that a separate vertical programme
for specific disease control is more likely to succeed than dovetailing multiple health care
programmes in a single project

Challenges Faced by Cancer Patients,

Caregivers and Families in India
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High treatment costs are one of the main reasons why cancer care is out of reach for millions of
Indians. If detected early, treatment is effective and cheaper. However, if detected late, it is more
expensive (can even lead to bankruptcy) and also reduces chances of survival.
A skewed doctor-to-patient ratio only worsens the situation. Our health ministry is working towards
achieving the target doctor-patient ratio of 1:1000 by 2021, which at present is 1:2000.
Patients in India face several challenges from diagnosis of cancer, during treatment and
management of cancer. The major issues are Financial, Facilities, Information and psychological.

Financial
Most cancer patients in India reel under the pressure of the astronomical cost of treatment. What
hits them even harder is the exorbitant amount of money paid for the drugs that are crucial for a
cancer patients survival at an advanced stage. It can be a huge drain on the resources of families
belonging to middle or lower income group. The mounting cost of cancer care can drive most
families to the brink of bankruptcy.
Although both the Central and State Governments provide free/subsidized treatment at the tertiary
cancer centers, patients often use expensive advanced-level treatment to increase their chances of
survival. As relatively low percentage of the population going in for health insurance, much of the
money spent comes from the people themselves.
The treatment of the commonest form of cancer in India head and neck cancer usually costs
between Rs. 15,000-20,000 a month in government hospitals. The costs of treatment borne by
cancer patients and family during the course of radiotherapy found that the average cost across all
treatment plans is Rs. 1,500 per week. Patients end up paying around Rs 10,000/- for a seven-week
course in radiotherapy. The average economic burden to a patient being amounts to Rs. 25,000/- in
a government hospital.
The cancer treatment in private hospitals is forbiddingly expensive in India. The costs of treating
non-Hodgkins lymphoma a lymph node biopsy, a bone marrow test, an endoscopy, a PET scan,
special anticancer drugs and six cycles of chemotherapy may cost INR 10,00,000/-. Each

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chemotherapy sitting costs INR 90,000. The main reason is the staggeringly high cost of imported
equipment for setting up a cancer hospital and expensive cancer treatment drugs.
Patients requiring other form of treatment including surgery and chemotherapy incur a higher
expenditure. Most often, depending on their type and stage of cancer, patients would require more
than one form of treatment. This pushes the families to deep financial crisis when cancer treatment
is expensive and is also long term with no surety of cure.
Patient has to pay for transportation and child-care especially in Indian scenario where patient has
to travel long distance to the tertiary care facilities. Hospitalization may well require another adult
to accompany the patient and that persons time is a direct cost.

Awareness and Information

29

Lack of awareness of cancer and screening for disease are significant contributory factors for the
relatively late stage of the disease presentation and consequently low reported cancer incidences in
India.
Certain cancers are amenable to primary and secondary prevention. This would mean increasing
awareness and education programs targeting promotion of healthy lifestyles, reduced tobacco use,
investment to change social attitudes and personal habits, improvement of cancer registries, and
mass screening for some cancers.
Cancer awareness in India is very low and very few people, even in Urban areas go for regular
cancer screening. Once diagnosed, there is a plethora of information available online, however this
is out of reach of most people, due to lack of education or lack of availability of internet.
A single oncologist in a government hospital sees approx. 50,000 patients each month. The doctor
spends an average time of 2-5 minutes with each patient. The doctor is able to give only the most
basic information on the disease. Most patients resort to tribal information on the disease and its
treatment and care which is unreliable.

Psychological
Despite advances in cancer treatment over the past several years, for many people, a diagnosis of
cancer can still feel like a death sentence. Most cancer patients and their families feel overwhelmed.
30

Patients are so distressed that they feel they are falling apart and have no control. This leads to
increased anxiety. In a setting where the goal of everyone involvedoncologists, radiologists,
nurses, patients, and familyis eradication of the disease, a patients psychological issues can be
downplayed or overlooked. Anxiety and depression are common among cancer patients and should
be viewed in the same way as any physical symptom that causes a patient distress.
Anxiety in cancer patients
A cancer diagnosis triggers anxiety in up to 40% of patients. The symptoms of anxiety may include
feelings of uneasiness, irritability, difficulty sleeping or staying asleep, increased pain perception,
and poor memory and concentration. Cancer patients can also be overwhelmed by the volume of
information they receive about their disease and its treatment; this information can come from many
different sources and is sometimes contradictory.
Depression
Signs of depression include trouble sleeping, eating too much or too little, feelings of hopelessness
or helplessness, loss of interest in life, feelings of guilt, lack of energy, and poor concentration and
memory. Patients have suicidal impulses. Patients with severe depression can develop psychotic
features

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JEET ASSOCIATION FOR SUPPORT TO CANCER PATIENTS

(JASCAP)
Mission
To lend a compassionate and helping hand to
those affected by cancer and their caregivers, and
to promote activities pertaining to cancer related
education, awareness and prevention.

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The Tragic Loss A Strong Motivation

In 1996, Prabhakar Rao was planning his retirement when he realised that life had other plans for
him. News reached him that his son Satyajeet, a 31 year old engineer who worked in the US, had
been diagnosed with cancer. Rao and his wife, Neera, who hoped that things would work out
differently, very soon lost their son to T cell lymphoma. In the last few months of their sons
struggle against cancer, Neera had seen that cancer related organisations in the United States
dispensed information to patients and their families, even if it wasnt asked for.
Finding these to be a treasury of information, the couple decided to setup a base back in Mumbai
with the desire to empower the cancer afflicted with knowledge regarding the subject. Called Jeet
Association for Support to Cancer Patients (JASCAP) and fondly named after their son, the centre
translates and publishes booklets and factsheets pertaining to several kinds of cancer.
Information is another form of treatment and we believe that this is information therapy, says
Rao.
Apart from disseminating quality information about the disease, JASCAP also makes regular
donations to cancer patients. They even fund research towards lymphoma, the strain of cancer that
afflicted their son. On the death anniversary of their son, which falls on 23rd May, JASCAP makes
special donations to cancer patients. The Rao family believes that this is their way of
commemorating their sons death, not with visits to the temple but by helping cancer patients.
People know we had a direct encounter with cancer and thus they choose to believe in the work
that we do, says Rao. The JASCAP team shares a dream that they should cover 15 languages and
50 publications in each language. While they have come a long way from the days of handwritten
letters and briefcases, Neera says, If my son was alive, we would not have JASCAP.
JASCAP (Jeet Association for Support to CAncer Patients) was registered as a Society on the 16th
October 1996 and as a Public Charitable Trust on 18th December 1996. Income Tax Exemption
(under section 80 G(1) of the Income Tax Act, 1961) has been obtained for donations to JASCAP.

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Satyajit Prabhakar Rao

Son of Neera and Prabhakar Rao
Born in Kolkata, India on 27 June 1965
Died of Cancer in Denver, Colorado, USA 23
May 1996
In Jeets name we have established JASCAP
and
we pledge to serve cancer patients and their caregivers
in many ways.

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JASCAP LOGO

More than a Logo, its a statement about who they are and what JASCAP stand for. Its everything
JASCAP are coming together to impart education, offer hope & support. This is reflected through
the icon, the colours & the fonts.
The icon is formed with silhouettes holding hands reflecting coming together for a cause.
This is a 5 colour logo with lavender, variations of blue and a combination color grey.
Lavender stands for rebalancing ones life to remove obstacles and energize.
Blue is the colour of hope & gives a pleasant calm feeling.
The slogan in stark grey is depicted in a bold font to communicate JASCAPs strong mission.

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Jascaps Activities
JASCAP is a knowledge based Non-Governmental Organisation (N.G.O.) and was started with the
goal of helping the common person understand the nuances (numerous aspects like medical tests,
treatment options and impacts) of cancer. Cancer is considered to be a natural punishment or death
sentence by many in India, but it need not be so. Cancer is curable, if detected and treated early. We
are committed to relieving the cancer patients and their families burden by providing educational,
financial, emotional and social assistance. The important activities of this NGO are: a. The publication of informative booklets and fact sheets on various types of cancer, its prevention
and early detection, its treatment and management and how to cope with the various physical and
emotional effects of cancer and/or its treatment.
b. Organizing cancer detection camps for different groups of people.
c. Arranging educational talks and seminars on cancer and its management for lay persons. This
includes talks, audio-visual presentations etc. on the great harm being done by the use of tobacco in
any form and the need to give up this habit.
d. Assisting cancer patients and their caregivers on deciding on treatment modalities to be followed,
in consultation with their doctors.
e. Co-operating with other NGOs working in the field of cancer. f. Rendering some financial
assistance to poor cancer patients and their families.
Total No. of Patients assisted financially from 1996 to May 2015 Over 2000
Total amount spent on patients assistance from 1996 to May 2015 Over Rs. 1.5 crore

Jascaps Approach

Never, never, never give up.

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People Involved
Trustees
JASCAPs founding members are Mr. Prabhakar K. Rao and Mrs. Neera P. Rao. Their core ideas,
goals and efforts are supported and encouraged by many of the other trustees. Along the way Mr.
Prabhakar K. Rao and Mrs. Neera P. Rao received steady and continued support from many friends
and well wishers.
JASCAP currently has following trustees on its board:
Mr. Prabhakar K. Rao

Mrs. Neera P. Rao

Mr. Prabhodh T. Patel

Mr. Suresh G. Vaidya

Mrs. Kunda V.Wakankar

Mr. Suresh V. Gankar

Mrs. Suchita Dinaker

Mrs. Supriya Gopi

Mr. Abhay R. Bhagat

Ms. Smriti Ranka

Volunteers
No organisation can function without funds. JASCAP depends on the generosity of donors and their
number is steadily increasing. However, the main force of our action is thier volunteers who share
the same philosophy as that of JASCAPs trustees and they want to help those suffering with cancer.
JASCAP provide a robust platform for committed volunteers to stand tall and help cancer patients,
cancer survivors and their caregivers by relieving their stress and anxiety caused by the disease.
Following is the list of our volunteers
Mrs. Vijayam Das

Dr. Alisha Desai

Mr. Vaman Kadam

Mr. R. Krishnamurthi

Dr. Vivek Patkar

Mrs. Aruna Thakur

Ms. Nargis oliya

Mr. Umesh Mahajan

The Bookstore
37

In the premises of the Tata Memorial Hospital located centrally in Mumbai, India, JASCAP has
been maintaining a bookstall for the benefit of the cancer patients and their families since early
2001. At this bookstall, we distribute (sell at a very inexpensive price) Cancer related information
booklets and factsheets in various Indian languages such as English, Hindi, Marathi, Gujarati,
Bengali, Kannada and in Tamil.
No of books distributed as of October 2013 : 200,000 (app)
No. of Languages : Eight

On the last count, JASCAP bookstall has over 120 Cancer information booklets in English, over 70
Cancer information booklets in Hindi, over 50 Cancer information booklets in Marathi, over 25
Cancer information booklets and factsheets in Bengali, over 20 Cancer information booklets in
Gujarati, over 19 Cancer information booklets in Kannada, over 3 Cancer information booklets in
Malayalam and Tamil each. JASCAP bookstall also has information factsheets on various subcategories of cancer in English, Hindi, Marathi, Kannada, Gujarati, Malyalam and Tamil.
The JASCAP bookstall is located at the entrance of the Annexe Building of Tata Memorial Hospital,
Dr. Ernest Borges Marg, Parel, Mumbai 400 012 . The hours of the operation of the bookstall are
from Mon. to Fri. 10 a.m. to 5 p.m. except Hospital holidays.

Cancer Info Center

38

With the goal of helping cancer patients understand the nuances of cancer, JASCAP has started a
Cancer Information Centre on May 6, 2011 very near the Tata Memorial Hospital in Mumbai, India.
At this Cancer Information Centre located in central Mumbai, they conduct a number of activities
for the patients mainly from the Tata Memorial Hospital but also for all other cancer patients. The
Cancer Information Centre was started to promote education regarding various aspects of cancer
and is staffed by our employees and our volunteers who are trained in counseling.

At the Cancer Information Centre, we offer the following services at no cost to the patients, their
families and the caregivers:

Provide information about different cancers and their management.

Help people understand why cancers can occur and how to prevent the preventable cancers.
Show videos on cancer prevention and cancer treatments to groups of people.
Conduct workshops for cancer patients, cancer survivors and their families to improve their

quality of life.
Provide individual counseling for cancer patients and their families.

The Information War

Jascap provides booklets in the following languages and volunteers are working on more
translations
39

English
Bengali
Telegu

Hindi
Kannada
Oriya

Marathi
Tamil
Assamese

Gujarati
Malayalam

100s of books and factsheet are available with JASCAP on various topics related to cancer in the
languages mentioned above. Listing topic wise information available with Jascap as below deals
with general information to specific type of cancers and coping skills.
http://jascap.org/englishbooks/index.html
Cancer General
Cancer Basics
Cancer Tests and Screening
Pre -cancerous Conditions
Cancer Types
Breast
Digestive Gastrointestinal
Germ cell tumours
Endocrine Neuroendocrine
Genitourinary
Musculoskeletal
Head and Neck cancers
Neurologial CNS Cancers
Hematology Leukaemias, Lymphomas, Myelomas, Other Blood Disorders
Respiratory Thoracic
Skin
Unusual and Rare Cancers
Women Gyenecological
Children Cancers
Cancer treatments
Biological or Targeted Therapies
Chemotherapy
Individual chemotherapy drugs
Hormonal Therapies
Radiotherapy
Stem cell & BMT
Surgery
Supportive and other treatments
Other Treatment
Living With Cancer
Coping with cancer Emotional Effects
Coping with cancer Physical Effects

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References
http://www.cancer.org
https://www.researchgate.net/publication/258212809_Cost_of_Treatment_for_Cancer_Experiences
_of_Patients_in_Public_Hospitals_in_India
https://www2.mdanderson.org/depts/oncolog/articles/12/8-aug/8-12-2.html
http://www.ncbi.nlm.nih.gov/
http://medind.nic.in/
Cancer_resource_Commision_on_Macroeconomic_and_Health_Bg_P2_Cancers_current_scenario
9.Ali_et_al_56-70
EY-Call-for-action-expanding-cancer-care-in-india
http://jascap.org/
http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(14)70115-9/abstract
http://indiatoday.intoday.in/story/cancer-disease-india-chemotherapy-manishakoirala/1/340991.html

Video link related to this project on youtube

41

https://youtu.be/T7OLYW98sFw

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