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Reports
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World Conference on Breast Cancer
World Conference on Breast Cancer The World Conference on Breast Cancer, which is held every three years in Canada, is dedicated to providing an international and multi-disciplinary forum where issues regarding breast cancer can be addressed. The conference is committed to advancing global action to eradicate the disease and ensure that the voices of everyone affected by it will be heard. As the sponsor said, "We got involved so that one day we won't need a word for it." This year the conference featured 150 presenters from 60 countries and was divided into five types of presentations-Roundtable sessions where delegates were invited to have informal discussions on different topics chosen by a leader over the breakfast table; Plenary sessions featuring panels of invited speakers on major themes; Concurrent sessions which provided an in-depth look at particular issues; Workshops for interactive learning and Posters to showcase educational support, practice, research and advocacy experiences. Films about breast cancer were shown and a "dragon boating" demonstration was held one evening. An international marketplace with 40 exhibitors was open to the delegates and local public throughout the duration of the conference. The Honourable Iona Campagnola, Lieutenant Governor of the province of British Columbia where Victoria is situated, inaugurated the conference with an address. After a musical programme by several talented musicians, the delegates walked in a parade down the streets of Victoria behind the national flags of participating countries. Traffic was stopped to allow the parade to proceed freely to the conference centre and people lined the route to cheer the delegates. The Indian flag figured prominently, borne by an Indian breast cancer survivor. This year's focus was on formulating concrete recommendations upon which individuals with breast cancer, survivors, organisations, governments and health care providers can act to eradicate the disease. Towards this end, one day was reserved for an "International Hearing". A panel of decision makers from Angola, Bangladesh, Barbados, Brunei Darussalam, England, France, Hong Kong, Iceland, Malta, Senegal, Uganda and the host country, Canada first heard presentations about ground realities in different countries from delegates. Dr. Cecilia Sepulveda, Director, World Health Organisation spoke about the WHO program on cancer control. The panel was then given a chance to respond to the observations and a discussion was held to formulate practical ideas on what delegates could do when they returned home. As a result "The Victoria Declaration" was written in which a call was given for governments of the world to comply with and implement the Precautionary Principle, "When an activity raises the threat of harm to human health and environment, precautionary measures should be taken even if some cause and effect relationship are not established with absolute certainty." The medical and scientific communities were called upon to ensure that the government held industry accountable to prove that their manufacturing processes, products and disposal did no harm to human life and environment. The psychosocial aspects of breast cancer were covered in "Breast Cancer as a Psychological Process." It is recognised that women need to tell the story of how they coped with breast cancer in terms of psyche, spirit and strength. At each stage, whether diagnosis, treatment, recovery, afterthoughts and long-term prognosis, patients want to share what they have gone through. Some found that it helps to record the facts and fantasy through drawing, sculpture or writing in an effort to express confusion, pain and anger. One of the events organised was a visit to an art gallery where artists with breast cancer displayed their work. A number of authors also talked about the catharsis afforded in writing down their innermost thoughts. Women wanted to understand why they had got cancer. Prior experiences of stress, "going too fast," self-sacrificing lifestyles were blamed. Shubha Maudgal's presentation "The Role of Counselors in Understanding Treatment Options" was well received by a sizeable audience. The trend in the developed world today is to share as much of the decision making process with the patient as possible. In fact there is a legal requirement for "informed consent." In India too a number of hospitals are asking their doctors to provide information to patients. Given the diversity of patients in India, where there are poor and rich patients; educated and illiterate patients and patients from cities and villages, it was considered worthwhile to study how far patient concurred with this hypothesis. For the study, patients were inducted from Cama & Albless, Nair, Wadia, Jaslok and Lady Rattan Tata hospitals to provide broadly varying backgrounds. Contrary to the notion that rich, educated and city based patients would want to be included in the decision making process, it was found that a large number of such people did not want to know and many poor, illiterate villagers were actually proactive in trying to find out about their treatment. During the questioning, it was found that there are three types of patients-the "Hopeless" who were certain that they will die and so give up trying once they hear the diagnosis of cancer, the "Helpless" who do not want to know about the treatment but rely on an accompanying care giver-sibling, spouse, friend or neighbour and the ones with "Fighting Spirit" who go out of their way to keep abreast with what they are going through. Surprisingly, a fourth type was discovered, the "Unknowing" who even after regular trips to their treatment centre, did not know that they suffered from cancer, where relatives are colluding to keep the knowledge from the patient. If a doctor has a responsibility to give information to those who wish to know, they also have a responsibility not to tell those who do not want to know. However cancer treatment involves a number of doctors-the surgeon, the medical oncologist and radiologist. To provide continuity in a patient's treatment and to ensure that they receive the amount of information they want or do not want, it was concluded that a counselor has an invaluable role to play. The counselor can analyse the patient type and provide required information in an unambiguous, understandable, useable form consistent with the knowledge being given by other caregivers such as doctors, nurses and social workers. The audience agreed with the findings and reported similar conclusions all over the world, in both developing and developed countries. A number of workshops on different issues had been organised. A problem facing breast cancer survivors is that of lymphedema. Due to the removal of lymph nodes during surgery, circulation to the arm is affected and many patients find that the arm does get swollen. The workshop on "Treatment of Postmastectomy Lymphedema with Dr. Vodder's Manual Lymph Drainage and Combined Decongestive Therapy" was designed to solve this problem. The workshop included a lecture, video and a live demonstration on the arm of a patient. A sequence of exercise, manipulation, massage, application of sleeve was explained. Patients present said that the procedure had been of help to them. The organizers had arranged a "Dragonboating" demonstration. Dragonboating is an important activity for many breast cancer survivors in Canada and is gaining popularity in other countries. The dragonboat is a large canoe with a tail at one end and platform at the other. 22 survivors train to paddle the boat with the help of a timekeeper who beats a drum placed on the platform and a steerswoman at the other end. At a time when survivors were told not to exert the arms, the experiment was initiated by a doctor in Canada which did just the reverse-exercised the upper body. Over the years, teams have formed not only as a sport, but in the form of a support group. Competitions are held between the different state teams and at the end, pink carnations are thrown into the water in remembrance of team members who have lost the battle against cancer. Delegates got a chance to try out the fun sport and even those who got soaked in the cold Canadian evening, agreed that it had been well worth the discomfort they had to endure. (This report on the Conference Proceedings will be concluded in next month's report.) Since January, the Cancer Awareness Programme is being promoted in companies at Silvassa, Dadra and Nagar Haveli. Zainab Allana and her team, consisting of Jyotsna, Laxmikant, Sushila and Rajan, have already made 4 trips to the union territory. They have approached 13 companies so far and held programmes at Hindalco Industries and Hindustan Lever. About 2000 employees heard the lecture and witnessed the 16mm film show. The Red Cross and Hindalco arranged for Zainab to address 500 adivasis residing in nearby villages that benefited greatly from the lecture. Similar programmes are being planned at Gulf, Sterlite and Monastone Industries in the near future. Many thanks to Mr. Jagdish Singh, Deputy General Manager, Administration and Mr. R. D. Gupta, Rural Development Officer, Hindalco Industries. The CPAA team stays at the Hindalco Guest House at Silvassa and all meals are provided free of charge ensuring that the trip is a comfortable one. Praveen Sutrave has been associated with this activity since its inception, as a projector in-charge and has been successful in running the film show in all manner of circumstances. Neeta More and Mrunal Marathe have both participated in the programme "Hello Sakhi" on Doordarshan in the past. The organizers recently invited Neeta to participate in the programme Arogyam Dhana Sampada on Akashwani. The programme, which was recorded on 12th June was broadcast on 11th July at 6.55 am and provided information about CPAA activities to listeners. Prevention and Early Detection 25 camps and OPDs were held during the month of June. 2 camps each were held for Rotary Club of Ulhasnagar and Bandra; Arya Vidya Mandir; Jeevan Jyot; Agha Khan Jamatkhana (AKJ), Andheri and Shri Wagad Nisher Mahila Mandal. One camp was held for AKJ, Byculla. A total of 517 people, 162 males and 355 females were screened in the camps. 157 people were advised follow up. 12 OPDs and clinics were held. 96 males and 148 females were screened. 73 people were advised follow up. A 60 year-old lady was detected with invasive breast cancer at the camp held for the Rotary Club of Ulhasnagar. The sponsors have been informed and CPAA will follow up on appropriate treatment for this lady. The department received a number of congratulatory letters from participants and organizers of the diagnostic camps. Mr. Y. N. Hegde, Trustee, Chandraprabha Charitable Trust wrote to congratulate Neeta More and her team for the detection and awareness camp held at Damodar Park, Ghatkopar in April. Mr. R. H. Mendonca, former Commicioner of Police, Mumbai was Chief Guest at the function. He had great praise for the doctors and volunteers and especially applauded the way that CPAA "gets the doctor to the patient if the patient does not come to the doctor."
Mrs. Shakuntala Jodhan also wrote to convey her appreciation of the detection camp at Arya Vidya Mandir on 15th June. She praised the contribution of the doctors, Dr. C. J. Joshi, Dr. Kanchan Kumpta, Dr. Rachana Mehra, Dr. Joe Dessa and Dr. Manohar Shan as well as the CPAA representatives in conducting a well organised and disciplined camp where all the participants were given proper attention and awareness inputs and making them understand the consequences of seemingly minor changes in the body. She expressed her intention of arranging the camp every year and regular awareness lectures. Such words of praise go a long way in boosting morale and motivation in the diagnostics department. Smt. Lila Kishanchand Shahani Clinical Diagnostic Centre The Smt. Lila Kishanchand Shahani Clinical Diagnostic Centre screened 322 persons during June. 996 tests were performed, out of which 802 were pathology tests. 126 sonography, 42 x-ray and 23 mammography investigations were carried out. During June, 135 people were examined, of whom 34 had come for the first check-up and 101 for renewal check up. Rs 1.36 lakhs was disbursed towards the claims settled during the month.
At Smt. Panadevi Dalmia Cancer Management Centre 671 patients were aided, counseled and given guidance at our locations in Mumbai-Srimati Panadevi Dalmia Cancer Management Centre; at Nair Hospital Radiation Centre; Cama & Albless, Wadia and Tata Memorial Hospitals in June. 566 patients availed of ambulance facilities, including 30 patients who availed of the stretcher service for long distances. 70 persons were given clothes, 30 packets of biscuits, 40 packets of cooking oil and 20 boxes of Complan and Feredol were distributed. 10 home and institutional visits were made. 7 of our patients expired during the month.
At Tata Memorial Hospital: Room No. 189, Golden Jubilee Block 266 patients were aided, guided and counseled by CPAA's Halima Aurangabadkar at Tata Memorial Hospital's Golden Jubilee Block Room No. 189 during June. 250 packets of biscuits were distributed. 51 patients were given clothes, 6 kgs of sweets were distributed. 7 referred cases were helped. 21 ward visits and 9 home visits were made. 9 patients were given medicines and toys were distributed to 20 children. 161 patients were given Complan and Horlicks. 554 patients utilized the ambulance facility including 526 who used the shuttle service between TMH and Dadar station. CPAA's Zakia Topiwala arranged to distribute biscuits and cold drinks to 65 children through a generous donation. In view of the start of the monsoons in Mumbai, Halima arranged for a donation of 100 umbrellas to keep patients dry. 100 kgs of sugar was donated to out station patients. "Can I Help You?" CPAA’s Desk at Tata Memorial Hospital’s Private OPD Jennifer Quadros helped 791 patients during June, providing literature on various kinds of cancers to 209 patients and their family members, helping 174 in filling up registration and other forms and answering questions about the hospital for 303 persons. 17 ward visits were made. 88 patients were counseled. Palliative Care Unit at Tata Memorial Hospital CPAA's Mrunal Marathe counseled 20 patients, 9 males and 11 females during the month of June. There were 5 cases each of head and neck and abdominal cancer; 4 cases of cervical cancer, 3 cases of breast cancer, 1 case of ovarian cancer and 2 other cases of cancer. A 55 year-old woman with cervical cancer was sent to the clinic after treatment over a period of a year and a half proved futile. The patient's husband could not understand why the couple should have come to such a pass. In an effort to assign a reason, he looked back on his life and the wrongs he had done to others. He remembered his daughters whom he had treated badly, preferring his two sons. Now, in their time of need, his sons have refused to help but the two daughters and their husbands proved to be the support the couple needed. The gentleman repented for the treatment he meted out to his daughters-he would not go to see them when they were born. Now, he felt the true love they have shown. Counseling at Tata Memorial Hospital’s Radiation Treatment Centre CPAA's Smita Khante counsels patients at the radiation centre at TMH regarding diet restrictions, care and cleanliness of the radiated part and boosting nutrition during radiation therapy. Patients are also given advice on accommodation and travel. 250 patients were counseled. Counseling of Breast Cancer Patients at Tata Memorial Hospital Rati Datta, Sushmita Mitra and Shubha Maudgal counseled 80 breast cancer patients in the General, 12 patients in Semi-Private and 4 patients in the Private wards during June. Patients were counseled in English, Hindi, Marathi, Bengali and Gujarati. Counseling of the Chemotherapy Unit at Tata Memorial Hospital From April, Rati Datta started counseling patients undergoing chemotherapy in the general OPD under the guidance of Dr. Reena Nair every Wednesday and Friday morning. Rati talks to the patients, clearing their doubts, answering questions regarding dosage, side effects, hygiene, diet and nutrition. At Bai Jerbai Wadia Hospital for Children 8 new patients were registered during the month of June. 291 patients attended follow up of whom 104 patients are undergoing chemotherapy. 15 patients were counseled and given guidance and Vinaya Chacko visited 5 patients in their wards. 6 group meetings were held. 25 patients were given packets of Complan, 35 persons were given biscuits, 35 sets of clothes were distributed and 35 patients were given cooking oil. A new playgroup has been started for the children every Tuesday wherein children are encouraged to colour and story-telling sessions are held. This gives the children a chance to express their fears. Counseling at Cama & Albless Hospital Cancer Ward 50 patients were counseled and given guidance by Iva Athavia during June. 50 ward visits were made. 5 patients were given guidance regarding alternative therapy and 13 patients for hygiene. 2 terminally ill patients were referred to Shanti Avedana Ashram. Rs. 6,085 was donated towards medicines and radiation costs. 2 packets of chocolates and 5 packets of biscuits were distributed among the patients. Nair Hospital (Radiation Department) 67 patients were counseled and given guidance at the Counseling Cell at Nair Hospital Radiation Department by Iva Athavia during June. 12 ward visits were made.35 patients were given information about hygiene issues and 8 patients were given information about alternative forms of medicines. Rs. 24,106 was donated towards radiation treatment. 50 packets of biscuits and sweets, 20 packets of Complan and 2 bottles of chocolates were distributed. 30 sets of clothes were distributed. The Rehabilitation Centre assisted 70 patients during the month of June. 14 cases of mastectomy were attended and breast prostheses were provided. 225 patients were given rations worth Rs. 30,124. Rs. 19,420 was spent on teachers' salaries, for patient education and vocational training. Rs. 1 lakh was spent on patients' wages and Rs. 22,049 was spent on welfare activities, conveyance and diet supplements during the month. Cancer
Patients Aid Association Monthly Review is compiled by Dr. Shubha Maudgal
and printed by Mr. Suresh Mishra at Saraswati Printing Press Please
write in with your comments to: Smt. Panadevi Dalmia Cancer Management
Centre, Anand Niketan, King George V Memorial, |
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Shubha
Maudgal, Director, New Projects attended the World Conference on Breast
Cancer in Victoria, Canada from June 4-8, where she was invited to present
a paper, "The Role of Counselors in Understanding Treatment Options."
Here is the first part of a report of the conference proceedings. The
second part will be published in next month's report.