This is a part of the report of SDMF- ACS (8th June2005- -8th June2006) of a collaborative project “Cervical & Breast Cancer Prevention Program in the suburbs of Calcutta – II ” which was completed on 31st December 2005 under the leadership of Samiran Das, Alumni, American Cancer Society University, Atlanta and Secretary, Saktipada das Memorial Foundation, Kolkata. The fund required for the project was received as ssed grant from American Cancer Society which was a part of the International Achievement Award received by Mr. Samiran Das for his courageous display of his leadership in global cancer control

This progress report is based on the principles that characterize canc.er control system of SDMF designed by Mr. Samiran Das and supported and monitored by Dr Srabani Mittal, MBBS (Cal), DPH (Cal), MIPHA,Faculty, School for Cervical Cancer Prevention (SCCP), Kolkata, Ex - Administrative Co-ordinator, SCCP, Ex - Medical Officer In-Charge, IARC Project on Cervical Cancer Screening, Principal Investigator: SDMF IARC Project

This progress report is based on the principles that characterize cancer control system followed by us in SDMF.

  • A broad based approach to cancer control from “Prevention to Palliation.
  • Providing Primary health care support.
  • Screen women systematically (25-65 years).
  • Providing treatment facility.
  • Follow up.

Initially we concentrated on:-

  • Reaching eligible women.
  • Training health professionals.
  • Monitoring program performance.
  • Improving linkages between Prevention, treatment, and palliative care services.
Increase in cervical & breast cancer incidence is a threat to mankind. Women are married at a very young age and their health’s are negatively affected by geographical, cultural barriers and low social / economic status other than reproductive and sexual health problems. Unfortunately, these women do not have access to systematic cervical screening and they restrain themselves from going for gynecological check ups even when they have positive symptoms. These are the main contributory factors, in occurrence of cancer –cervix. Most of the cases are diagnosed in much advanced stage of cancer and many die undiagnosed as a result of such ignorance.

Under the circumstance, to prevent the occurrence of cervical cancer amongst women living in urban slums I have used $5000=00 (Five Thousand US Dollar received along with the International Achievement Award from ACS in June 2005 for demonstrating courageous leadership in the global fight against cancer). Initially there were certain taboos regarding approaching the slum - inhabitants for screening. Primary health care support (Pic-1) has helped to infuse a new sense of confidence / trust in my approach. People slowly but surely woke up to the benefits of prevention.

Acknowledgement

This Project could not have been successful without the assistance of women unfortunately diagnosed with cervical and breast cancer and their families, medical and radiation oncologists, surgeons, GPs, counselors, health & social workers, and other support staffs. I convey our thanks to all the women who agreed to share their photographs. Financial assistance from American Cancer Society is very much appreciated. I convey my thanks and gratitude to American Cancer Society for providing me the training (which was proved to be an enriching experience in form of learning important cancer control components) resulting in success in the collaborative project.

I acknowledge the contribution made by the following people and organizations
Dr. Partha Sarathi Basu, (Head, Gynecologic Oncology, Chittaranjan National Cancer Institute, kolkata, Head, School for Cervical Cancer Prevention, Kolkata)
Dr. R K. Mondol (Academic Coordinator, School for Cervical Cancer Prevention, Kolkata)
Dr. Srabonti Mittal (Ex Administrative Coordinator SCCP, IARC), Chief Investigator SDMF IARC Collaborative Project.

Abstract

Art music & love is universal and borderless. So is CANCER, which has become a pressing international issue. Cancer is a serious public health problem but among the non - communicable diseases it is also the most preventable and treatable. The mission to conduct an extensive, intensive and participatory development process through people’s increased level of awareness guided me to take up the mission to eradicate cancer from our society as far as possible.

I aim to specifically reduce the no of cancer incidences and provide the best practical assistance to those who unfortunately are diagnosed with cancer. The technical support is provided by the Regional Cancer center; Kolkata.. A good number of women living below poverty line have been systematically screened and treated wherever necessary with the support of other logistics from my associated NGOs. Collaboration with ACS has made the project fruitful in every respect.

The vital factors for prevention and control of cervical cancer in India is by
  • Avoiding early marriage (not before the age of 21 years) and early sexuality.
  • Restricting multiple pregnancies (not more than two),
  • Improving socioeconomic condition and
  • Introducing proper health education.

Therefore our major thrusts were

  • To create awareness about the predisposing factors of cancer
  • To motivate women for cancer screening
  • To screen women systematically in the age group 20-65
  • To investigate the screen-positive women further and arrange for treatment /follow up whatever is required.

My cancer control aims to prevent cancer, cure cancer, and to increase survival and quality of life for those who develop cancer by converting the knowledge gained through research, surveillance or outcome evaluation into strategies and actions.

The Study

Sharp increase in cancer incidence is a big burden and could be prevented by creating awareness and timely intervention. The low status of women compounds health care delivery problems in less developed world. With little power to negotiate with men, women often have no say leaving them vulnerable to various ailments including sexually transmitted diseases. People living in informal settlements experience threats to their health and well being constantly and women are the worst sufferer as their health related issues are totally ignored. Poverty and lack of education makes things even more vulnerable.

Cancer being my main area of focus my target was to screen the eligible women within specified age group i.e.20 yrs -65yrs. An extensive door-to-door survey was conducted by our social workers by filling up a questionnaire form and personal interviews.

Specially designed awareness programs (mainly Visuals - appropriate for poor literacy level) held at regular intervals, inspired and motivated women to come forward for cervical / breast cancer screening. Our field workers, motivators and volunteers provided information, education through distribution and display of awareness materials and by communicating personally.

6 primary health care clinics along with 4 screening clinics were held every week within our area of presence. Primary health care support was provided after assessing the need as it was understood that cancer couldn’t be dealt in isolation .Our beneficiaries had very little access to primary health care from the government health department or private sector. It won’t be out of the place to mention that primary clinics were the second point where from we could counsel & motivate women to attend the cervical & breast cancer screening clinics which are being run simultaneously in the same locality so that the women don’t have to travel much.

The cost of cytology screening (PAP SMEAR) is high, so the women are screened using the alternative-screening test (VIA ) that has shown acceptable sensitivity and specificity in various research studies.

The women were screened using the VIA technique performed by trained female health workers followed by colposcopic investigation by trained lady medical officer, as our beneficiaries are not comfortable with male health care providers. Biopsy samples are obtained wherever required. We are equipped to provide treatment with cryotherapy Technique in the makeshift clinics only but in this project detected cases were referred to the Regional Cancer Center as all the cases required Leep treatment which was provided under the guidance of renowned oncologists.

To specify my work procedure here is a step-by-step case study of Karuna Paul –beneficiary of Saktipada Das Memorial Foundation.

Social workers went out of the way to convince Karuna’s family and escorted Karuna along with her husband to the Regional Cancer Center on 13th May 2005. Karuna was discharged from the hospital within a day and was asked to observe some restrictions for the week that followed Prescribed anti—biotic, vitamins and analgesics were provided.

Karuna’s family was overwhelmed by the entire episode and conveyed their gratitude in whatever way they could.Presently Karuna is free from the warning symptoms that were bothering her and leading a normal life. SDMF is in touch with Karuna ( as normal - I TREAT ALL OUR BENEFICIARIES WITH HUMANE CARE AND DIGNITY. We explain the Screening procedure and ensure that the procedure is simple and painless. After relevant obstetric and gynecological history is noted, written consent are obtained from the individual.

In our Cancer screening Clinics women are encouraged to practice Breast Self Examination and the right procedure of BSE are taught to them with the help of a interactive software ”Can Scan” which illustrates BSE with animated pictures which is amusing/ interesting to them. Our basic aim is to allow a woman to familiarize herself with the normal feel and appearance of her breasts so that she can instantly detect any changes that may develop.

More over our health workers palpate in the clinics and sometimes in the privacy of their home and abnormal cases are referred for Clinical Breast Examination. We literally keep track of these women and always stand by their side in whichever way possible. All logistics are provided till the treatment is complete.

We enable people with pre cancerous symptoms to have more voice, in their own treatment .We take good care of them so that they feel more in control of what is happening to them. Our workers are always ready to go the extra mile and extend their support to put back hope into empty hearts & make them feel precious.

The capacity building training programme held at Oakland, USA ( September 2003) Regional meet in Taipei(May 2004) worked as the stepping stones towards successful execution of cancer control programs by me. Introducing primary health care after assessing the need in our area of presence worked wonder. The women came out from the shell where they enclosed themselves with the myths and existing social impediments. Including the head of the family during family counseling was also effective in wide participation of women.

. However it was not a cakewalk all through. Poverty and its associated problems, mainly lliteracy and some serious social impediments continued to creep on time to time. The population that we had identified is the section most in need of help; hence the concept of preventive medical care does not exist. Opting for early detection is almost a luxury. They believe in all sorts of unscientific procedures / black magic and drain money in the process. To counter these problems, we took the help of different women’s organizations, female nurses and social workers who entered into dialogue with the targeted women, initiated counseling and tried to erase the misconceptions/myths thus promoting awareness.

We encouraged the men folk in our area of presence to come forward and join hand with us so that we can challenge public attitudes to cancer: its dark fearful reputation, which causes unnecessary suffering to people living with the illness.

The Outcome

This collaborative project gave me the opportunity to serve a cross section of population (inclusive of 719 men, 10161 women and 836 children) i.e. 11,716 beneficiaries in total between 06/08/2005 – 12/31/2005.

  • 2475 (approx) beneficiaries attended awareness meetings.
  • 4200 beneficiaries were treated in primary clinics. 307 beneficiaries were treated in Special clinics.
  • 3767 women got themselves registered (within age group of 25 – 65) for breast and cervical cancer screening
  • 2201 women were screened using low cost VIA & VILI techniques.
  • 1304 women were found to be VIA Positive
  • 967 VIA + women were screened further by Colposcope.
  • 42 Biopsy samples were obtained for confirmation/elimination of colposcopy Positive findings.
  • 16 cases were diagnosed to have Cervical Pre-Cancer from Histopathological report,
  • 10 patients were provided free treatment, in Regional Cancer Centre.
  • 2 patients’ treatment is withheld due to Pregnancy.
  • 1566 women were screened for breast cancer using interactive software (Canscan) and taught Breast Self Examination.
  • 98 women were referred for Clinical Breast Examination.

Monitoring and Evaluation:

This particular project was monitored by Dr Sraboni Mittal, Gynecological Oncologist, B.P. Poddar Hospital, Kolkata , Ex Administrative Coordinator- School for Cervical Cancer Prevention, Chittaranjan Cancer Institute, Kolkata, Principal investigator ‘IARC – SDMF Collaborative Project’. Letter of certification

All the information related to our screening and findings are put into database (as shown below) with the help of Microsoft Access Software and this information can only be shared with ACS. We had close association with Regional Cancer Center & School for Cervical Cancer Prevention who help us in organizing field clinics, staff training, project monitoring and managing the referrals.

Conclusions:

It was extremely difficult to have cancer screening recognized. When I first told people about our idea, some scoffed at us, some were skeptical because of our non-medical background. We moved forward with the support of our dedicated workers and staff members, co-operation of associated NGOS, sufficient manpower and machineries .The grants received from ACSU have provided us practical assistance and encouragement.

In the absence of a cure for cancer, and questions over the long term effects of drug therapies, the dependency on our services remain high .We will continue to refocus and reshape them as needs dictate .We are further committed in supporting the needs of the dying and their families in the communities we serve.

  • Cervical cancer is an issue that can be easily addressed. Cancer leagues and societies must play a leading role to drive the agenda forward
  • We must not lose activism ever or let this important issue fall by the wayside.
  • In the midst of all the actions, a significant effort should be in the direction of ensuring participation of youth who are expected to volunteer their service in their respective community.

We encourage all individuals and organizations with an interest in women’s health to contact their regional cancer centers/state health authorities so that they get necessary support to organize such screening/ early detection program towards a more HOPEFULL FUTURE.

Our voice is necessary to express what millions of underserved women cannot say. Their silence is our inspiration and Commitment

While working as the Secretary & Chief Functionary of Saktipada Das Memorial Foundation I could assess the need of its beneficiaries and decided to start number of Primary Health Centers and Gynecological clinics every week to provide the required health support needed by the community. Primary health care support is provided specially to the beneficiaries who have very little access to primary health care from the government health department or any other sector. These clinics were the second point where from we motivated our target population to attend the cervical cancer detection clinics, which were set up at different places but in the same locality to ensure that the women do not have to travel much.

Cancer is one of the most dreaded and feared disease in India but the awareness and early detection is very much neglected by our society. There are number of myths about cancer in different religions as well in the mind of the people from different background. Scenario in Calcutta, India is in no way different. To combat the situation, growing awareness amongst the public is absolutely necessary. Besides awareness, prevention and early detection of this dreaded disease is also equally important. Hence SDMF initiated to fight CANCER in 1999.
We are not sure how to combat this particular situation, as there are very few organizations/ Institutions who are interested in cancer control program and not willing to collaborate with others working in the cancer control field as they feel it is a disease, which cannot be cured. Moreover over burden of population and increase in average life span are also two major contributory factors to increase the cancer incidence.
Every year, cervical cancer affects 500,000 women and takes the lives of a quarter million worldwide.

Women in developing countries bear the brunt of this disease, with 80% of the deaths from cervical cancer occurring in poor countries, due to extremely limited screening and treatment availability.

Medical revolutions not only occur when effective cures for wide spread diseases are discovered - they also occur when already existing medicines and health care techniques become accessible to poor people living in remote areas.

NGOs are taking an increasingly significant role in providing health care and bringing about positive changes, it has been proven beyond doubt that NGOs are indispensable to health promotion because of the flexibility of their programs and the extent of penetration

CORE FOCUS was-

? Prevention and early detection of cancer through awareness-generation, screening and early detection specially among underprivileged women

Knowing about my cancer control activities Snehalata Guha Hospital, DAUGHTER OF THE CROSS, P.O Basanti, 24 Parganas (S), West Bengal, India, PIN-743312.(75 year old organization in Basanti of Sunderban,) authority wanted to initiate cancer screening in and around Basanti and requested me to extend all possible support and I decided to extend the support through saktipada Das Memorial Foundation’s Cancer Control Programme. Trustee Board of SDMF immediately responded for this noble cause and I could start the project(Cervical cancer screening and early detection) with active support from Dr. P.S. Basu, Head Gynecological Oncology, Chittarnjan National XCancer Hospital, Kolkata who is my mentor and a driving force behind all my cancer related activiries.

Sundarban is composed of 102 islands of which 40 are inhabited; Basanti is such an island of Sundarban where people are constantly fighting against poverty. So urgent are their needs of sustenance that education is low priority in their lives. Poverty, lack of income, overwork- and economic and social inequality are causes of ill health. This has an effect on women's development as well.

This densely populated area lacks basic amenities like electricity, health care facility in spite of few Government-run primary health centers, which are understaffed and frequently run out-of-stock for medicines and other supplies. For any chronic or severe disease they depend solely on quacks / fate

Because of distance factor and lack of proper communication we could not initiate any activity in Sundarban till 2006. A new bridge was constructed (Feb 2006) to connect Basanti with other parts of the state and communication since then has become much easier.

Through in-depth interviews, individual observations and group discussions it was apparent that the existing health delivery system was not at all adequate enough. A conscious effort was made to identify specific health problems of people after a multidisciplinary team visited the proposed area (22-02-2006). To reach Basanti the time required is about 2 hours by car and 3½ hours by public transport. The staff members of Snehalata Guha Hospital seemed to be committed, sincere and enthusiastic about their work. An important point in their favor is that most of their staff and volunteers belong to the local area. They have a good grasp of the local situation, the important needs and understanding of the psyche of their clientele and aware of their issues.

We started a community health program in SNEHALATA GUHA HOSPITAL, DAUGHTER OF THE CROSS with the vision of treating needy patients, particularly destitute women and children, free of cost, and to impart / increase adequate consciousness about health and hygiene among local villagers.

The main objectives were

1. To reduce the incidence of mortality and morbidity due to cancer
2. To educate the community about the predisposing factors of cancer
3. To build capacity towards service to be delivered in the project.
4. To support and supplement special health related activities and preventive programs
5. To encourage and support programs to integrate primary health care.
6. To arouse adequate consciousness about health and hygiene among villagers.

OUR ACTIVITIES WERE DESIGNED AS TINY STEPS TOWARDS THE ULTIMATE GOAL.

  • Regular health camps to be conducted;
  • Training to be given to local people thus identifying volunteers.
  • Could organize eight health awareness camps with informative audiovisuals were successfully organized.
  • “Tobacco menace” was addressed in presence of large number of school children and their parents followed by a tobacco cessation program for NCC Cadets of surrounding area.
  • Five training sessions for social and health workers were organized.
  • Finally evaluation of our work.

I was lucky to have highly professional back up support from medical oncologist groups and technical support of the Regional Cancer Institute, Kolkata. Our working group comprised of dedicated medical officers, trained health workers, social workers, motivators and project co-coordinators. We worked hand in hand with the active support and cooperation of other NGO’S. As a result I could put together the most qualified team to effectively promulgate the concept of cancer prevention and early detection.

OUR MISSION WAS TO WORK FOR:-

  • People with cancer
  • People affected by cancer
  • People worried about cancer
  • Professionals working with people with cancer

WHAT GOES ON

  • Provision of information
  • Counseling
  • Primary health care support
  • Gynecological clinics
  • Special clinics
  • Meeting, seminars and workshops on cancer control
I aimed to specifically reduce the number of cancer diagnosis and provide the best practical assistance to those who unfortunately are diagnosed with cancer.

It is important to investigate practical ways to educate people how to change their behavior to reduce the risk of cancer and improve the quality of life and survival after diagnosis. From these come practical community programs, many of which involve many trained volunteers, helping common people to understand and overcome the dangers of cancer.

With the financial support of SDMF I could adopt a population of 100, 000 living below the poverty level, with the mission of educating them about the predisposing factors of cancer and to screen women for breast and cervical cancer as early detection can cause a sharp decline in cancer incidence and mortality.

I worked to achieve two goals
EDUCATE WOMEN ABOUT THE IMPORTANCE OF ROUTINE CANCER SCREENING
CREATE PROGRAMS AND PLACES WHERE THEY CAN GET SCREENING SERVICES, TREATMENT, FOLLOW UP SERVICES AND CARE
The Abstract

The field workers, motivated and volunteers regularly organized group meetings, audiovisual shows, distributed printed materials to spread awareness and to motivate the targeted women to come forward for cervical cancer screening. They provided information, education through distribution and display of awareness materials and by direct personal communication as well as group counseling meetings.
The eligible women were screened using the Visual Inspection with Acetic Acid (VIA) technique performed by female health workers trained at School for Cervical Cancer Prevention (SCCP), Regional Cancer Center, Calcutta. The women tested positive on screening had colposcopic examination performed by Medical Officers specially trained at SCCP. Biopsy was done wherever required. Most of the pre-cancer cases were treated at the community clinics using cryotherapy technique. Other detected cases were referred to the Regional Cancer Hospital. All logistics and financial support were given by SDMF to those patients to complete the treatment.
Pap smear cytology facility was not possible to organize by us, as cytology facilities are available in a few private clinical laboratories only. The number of smears examined by these laboratories falls far short of the requirement of the WHO guideline. It is likely that the cytology performed in these laboratories will suffer from poor sensitivity and specificity. The cost of cytology screening is high so the women are screened using the alternative-screening test (VIA) that has shown acceptable sensitivity and specificity in various research studies.
All the beneficiaries who came for screening were treated with human dignity and care.

  • Explained the screening procedure and ensured that the procedure is simple and painless to them.
  • After relevant obstetric and gynecological history is noted, written consents were then obtained from the individual.

Detected positive cases were referred to the Regional Cancer Center for post treatment check-up which was provided under the guidance of renowned oncologists.

N.B. All the instruments are sterilized before doing Visual Inspection and proper hygiene is religiously maintained in all the screening clinics.

The objectives for this working group were:

To identify the factors that affects the implementation of a comprehensive Cervical Cancer Screening Program,

To focus on specific components of a comprehensive cervical cancer screening program (information systems, quality improvement, recruitment and education)

To develop an approach through which information with respect to program development, organization and data can be shared with ACS.

The major stumbling blocks in the project was poverty and associated problems, mainly illiteracy and some serious social impediments. The population that we had identified was the section most in need of help. If basic needs such as shelter, food, clothing, and work are not met, it is hard to put preventive medical care and early detection at the top of the priority list. They leave below the poverty line- hence; they are necessarily so involved in earning one square meal a day, that health becomes almost a luxury.
The women in our target population are economically and socially underprivileged. Women’s health in this section of society is lowest on a family’s list of priorities. Conservative notions of a woman’s modesty also hinder detection of the disease. Even if they want to go for a gynecologic check up, they have to take permission from the male members of the family. India's conservative society believes that the less a girl knows about sex the better. To counter these problems, we took the help of different women’s organizations, female nurses and social workers who entered into dialogue with the targeted women, initiated counseling and promoted awareness. We have tried to motivate women as well as the men in our area of activity by one to one counseling, group meetings etc. Time to time we had approached the local bodies/clubs and asked the members to volunteer their service and we had tried to educate people at grass root levels to eradicate age-old misconception.

All the information related to our screening and findings are put into database (as shown below) with the help of Microsoft Access Software

The outcome of the project:-

  • Registered 5076 women of all age groups from Home Survey
  • Registered 3,358 women of all age groups from Primary health Clinics
  • Registered 645 women of all age groups from Awareness meeting and Workshops
  • Registered 818 women of all age groups from Gynecological Clinics
  • Registered 3594 women eligible for Cervical & Breast Cancer Screening
  • 2177 women gave their consent to attend the screening clinics
  • 1705 women were screened for Cervical cancer
  • 148 women were found positive on Visual Inspection with Acetic Acid
  • 148 women were referred for Colposcopy
  • Biopsy samples were taken from 46 patients.
  • 11 patients were diagnosed to have cervical pre-cancer on biopsy.
  • 9 patients were treated in SDMF clinics.
  • 2 patients were diagnosed having invasive cancer and they were referred to Regional Cancer Centre for further treatment.
  • Breast Self Examination was taught to 1996 women.
    
                                              Treatment in Basanti Clinic                   Screening in Basanti Clinic