Breast Cancer Support Group Volunteers' Training Programme Given below is a report of the training programme organised by Indian Cancer Society (ICS) and Sahachari-Mastectomees Association, India from 18th to 21st February 2002. Twenty volunteers, survivors or close relatives of cancer patients, attended the training programme organised by ICS and Sahachari. The latter is a volunteer organisation consisting of breast cancer survivors who are doing a sterling job counseling patients at ten hospitals all over Mumbai. Shubha Maudgal, Smita Khante and Rati Datta from CPAA attended the programme. The programme covered medical aspects of breast cancer treatment such as Surgery, Chemotherapy, Radiation, Lymphodema management and Palliative Care as well as topics of relevance to counselors such as Rights, Concession and Support, Personal Care, Spirituality and Yoga, Diet and Alternate Medicine and instructions on effective counseling, the role of a volunteer and how to reach out. Surgery, Chemotherapy and Radiation are covered in this month's report. Dr. R. Badwe of Tata Memorial Hospital gave the introductory lecture on breast cancer. An analysis of breast cancer statistics has revealed that from 1992, breast cancer replaced cervical cancer as the most common cancer among Indian women. It has been observed that there is a great deal of disparity between breast cancer incidence in rural India and urban India on one hand and between India and the US. In rural areas today, 1 in 60 women in the age group 30-65 years will suffer from breast cancer in her lifetime. Among the urban population this figure is 1 in 30. In the US, as many as 1 in 8 women will contract breast cancer. The differences have been attributed to changes in dietary habits which in turn seems to have caused the early onset of menarche, ranging from an average of 13-14 years in rural India to 9 in the US. Similarly the average age at menopause varies from 43 years in rural India to 49 years in urban India to 52 years in the US. This means the length of the reproductive cycle varies from 30 years in rural India to 43 years in the US. At the same time many women are postponing their first pregnancy and the interval between menarche and first pregnancy is now as much as 26 years. To reduce the risk of contracting breast cancer, Dr. Badwe recommended first full term pregnancy by age 20-25 years. Due to pressures to rejoin work after delivery, women do not breast feed their babies for the optimum 6 months to a year, a fact which has been related to increased risk of contracting breast cancer. While there is no evidence that the use of oral contraceptive pills increases breast cancer incidence, exposure at an early age of 15-20 years as is common in western countries does seem to result in increased risk. Similarly Hormone Replacement Treatment, which is taken to reduce the danger of osteoporosis and heart disease after menopause, increases risk of breast and ovarian cancer. Obesity has been found to have a direct correlation to increased breast cancer risk. After menopause, body fat is converted into estrogen, which has been linked to a higher risk of breast cancer. A family history doubles the risk. However due vigilance can counter the heightened risk. The importance of early detection cannot be overemphasized. A regimen of monthly Breast Self Examination, biannual mammography and annual consultation with a doctor, can help detect cancer when it is curable. The results of better awareness are already evident. From 1964-84, the average size of a lump at diagnosis was 7 cm, while today it is 2.5 cm and reducing. Dr. Badwe emphasised the importance of having a physical examination every year. In younger women who typically have dense breasts, examination by a doctor and ultrasound can help save lives. Unfortunately, a breast cancer tumour is not painful and hence often goes untreated. When a woman presents with a lump, the process of diagnosis starts with a clinical examination, mammography and Fine Needle Aspiration Cytology (FNAC). The doctor tries to diagnose whether the tumour is an Operable; Locally Advanced (LABC) or Metastatic Breast Cancer. Patients are given the option of Breast Conservation Therapy (BCT) wherein the lump is removed along with a tumour free margin all around (wide excision) and axilary clearance (removal of lymph nodes in the underarm to check whether there is spread of the disease) followed by radiation instead of the earlier treatment choice of total removal of the breast (mastectomy). Today, only about 30% of patients go in for a radical total mastectomy. In such cases, BCT may not be possible due to the presence of multiple lumps or microcalcifications, which indicate a precancerous state. A tumour is deemed LABC if it is large or if skin or lymph nodes are involved. Scans of other organs such as liver, bone and lung are done to ensure that the disease has not spread. If the disease has not spread, chemotherapy is given to shrink the tumour before surgery, followed by radiation and/or chemotherapy, a procedure which is curative in most cases. If the disease is metastatic, i.e. it is found to have spread, cure is not possible and the doctor then aims for control. Even lung metastasis can be controlled but it will eventually recur. The pathology report of the tumour removed during surgery is indicative of the prognosis of the patient. A hormone receptor test is done to reveal whether the tumour is sensitive to hormone treatment. If so, the patient can be given Tamoxifen for up to five years. Tamoxifen reacts with sites on the tumour in competition with the hormone and kills the tumour cells. Hormone treatment has relatively few side effects compared to chemotherapy and has been shown to stop recurrence in 25% of the cases. There is however, an added risk of contracting uterine cancer to the extent of 1 in every 500 patients, but if the patient is monitored closely, this risk can be easily controlled. All patients are offered chemotherapy unless it is specifically contraindicated such as when a patient has a heart condition. In cases where the patient is lymph node negative (lymph nodes do not show the presence of cancer) the chance of a recurrence is 20% and the benefit from chemotherapy is 7%. For node positive patients the chance of recurrence is 50% and the benefit is 16%. Thus one third of patients will benefit from chemotherapy. For post menopausal women the benefit is halved, and the patient may not be able to tolerate chemotherapy, so the doctor must decide whether to offer chemotherapy or not. In cases where a mastectomy has been done, the doctor must decide whether radiation is required or not. Generally if a large number of lymph nodes were found to be positive, radiation therapy is indicated. Dr. Sachin Almel of Hinduja Hospital discussed the topic of chemotherapy in details. He explained the rationale behind the fact that today all breast cancer patients are given chemotherapy. It has been found that by the time a patient notices a lump, occult metastasis or micrometastasis is already present, hence local control by surgery alone is not sufficient to eradicate the disease. Systemic treatment, that is treatment of the entire body, therefore has an important part to play in the effective control of the disease. Chemotheray or Cytotoxic Therapy can be used in neo-adjuvant (before surgery), adjuvant (after surgery) or palliative (control not cure) settings. Adjuvant therapy has demonstrated activity against metastatic disease, a combination of drugs being superior to a single agent. The most commonly used drugs are cyclophosphamide, methotrexate and 5 fluorouracil (CMF), but this regimen is not well tolerated by Indian women. Newer drugs such as AC (paclitaxel, docetaxel) or ethoside are being increasingly used. The medical oncologist looks to various prognostic markers to make treatment decisions such as whether chemotherapy is indicated and in what combinations. These include the presence of even one positive axilary node, tumour size (larger than 2.5 cm), TNM stage, lymphatic and vascular invasion, histologic tumour type and grade, nuclear grade, hormone receptor studies (ER/PR), ploidy (aneuploid/diploid), proliferative indices (S phase fraction, thymidine labeling index and mitotic index) and c-erbB2. The pathologist stains the tumour cells and observes them under a microscope. Cancerous cells show abnormal patterns in their structure and that of their nucleus as compared to normal cells. They also grow and divide in an abnormal manner. The degree to which the cells differ from normal cells is an indication of an aggressive tumour with high risk of recurrence. The c-erbB2 is an antigen which is expressed on the tumour surface. If 60% of the cells show response, the tumour is susceptible to herceptin, which forms a relatively new line of chemotherapeutic treatment based on monoclonal antibodies. At present, the cost is prohibitive being in the range of Rs. 4 lakhs per month for 6 months. The treatment gives a 45% chance of reducing the recurrent tumour by 50%. The timing of radiotherapy and chemotherapy is a controversial issue. Most doctors feel that at most 5 weeks should elapse after surgery before starting treatment. Usually radiotherapy is given first. It is associated with low incidence of local recurrence but high incidence of systemic recurrence. For a high risk disease, chemotherapy should be started first followed by radiotherapy. Both treatments cannot be given concurrently in view of the high toxicity of the treatments. For node negative disease, doctors may not give any cytotoxic therapy, preferring tamoxifen if the tumour is ER/PR positive. Investigational regimens such as ploidy could be used to decide whether CMF should be given along with tamoxifen. In case of a node positive disease, tamoxifen can be given with or without CMF, AC or CAF. Again investigations can help the doctor to decide which regimen should be chosen. As mentioned earlier, the doctor must assess each patient's risk level. A low risk subset includes a tumour size less than 1cm, low histologic grade, ER/PR positive tumour, postmenopausal age group, no lymphovascular emboli, no perineural invasion and node negative disease. Low risk groups can be given Tamoxifen with or without CMF. High risk groups are given doxo based regimens such as AC with or without Tamoxifen. Typical dosages are calculated based on the surface area e.g. 60/sq.m. given every 3 weeks for 4 cycles followed by 4 cycles of CMF or Paclitaxel. For those patients with less than 3 nodes positive, 4 cycles of AC or CMF with or without Tamoxifen can be given. If more than 3 nodes are positive, a regimen based on doxo and paclitaxel or docetaxel are usually given. LABC encompass neglected or slow growing cases as well as biologically aggressive tumours where surgery and radiotherapy alone give poor results. In such cases neoadjuvant chemotherapy has been successful. Results have been found to be better if systemic chemotherapy is given before surgery and radiotherapy. These developments have been a major triumph in therapy for LABC. Typically, chemotherapy is given up front and response is observed in the form of degree of tumour regression. Surgery and radiotherapy then follows with further chemotherapy if necessary. Most patients show some degree of side effects to chemotherapy. Rapidly growing cells are the first to get affected, such as hair, mucosa (gastric, mouth) and bone marrow. The most common side effects are therefore alopecia (loss of hair), amenorrhoea (stopping of periods) and hot flashes. Edema (swelling), leucopenia (lowering of White Blood Cells WBC level), Musculoskeletal pain, nausea and vomiting are less commonly seen. In rare cases, febrile neutropenia (lowering of specific types of WBCs), neuropathy (nerve degeneration), stomatitis, thrombocytopenia (lowering of platelet level) may also be observed. Vincristine generally causes constipation and sometimes peripheral neuropathy. Secondary leukemias and sarcomas have been seen in rare cases. Liver, kidney and neurotoxicity can be minimized by proper care. Cisplatin requires adequate hydration. The management of metastatic disease, i.e. palliation makes use of newer agents such as docetaxel, gencytabine, liposomal doxorubicin, selective aromatase inhibitors, aperitibine (Xeloda) and navelberine. High dose chemotherapy has not been found to have any role. As mentioned earlier, Herceptin monoclonal antibody therapy has limited utility. Radiotherapy and Pamidronate/Zoledronic Acid is sometimes used. The intention in this case is pain management and symptomatic care. Adjuvant chemotherapy is effective and remains the standard of care for all patients with ER negative tumours. Large studies and overviews have underestimated the effect of chemotherapy in postmenopausal women with ER negative tumours. For Er positive tumours, it is necessary to achieve amenorrhoea for maximum benefits. Ovarian ablation, that is removal of the ovaries probably has a large role to play. Adjuvant tamoxifen may be more effective for patients with ER positive tumours after reduction in amount of estrogen available to the tumour. Tamoxifen with or without modestly toxic chemotherapeutic drugs are the optimal treatment of choice for patients with low risk tumours. In case of pregnant patients, chemotherapy does not result in malformed child except in 12-13 % cases. The topic of radiotherapy, which was covered by Dr. Nagraj Huilgol of Nanavati Hospital, is the third mode of treatment available to the oncologist. It can be curative in earlier stage disease or palliative in advanced cases. There are three types of radiation which can be used for treatment of cancer-photons (generated by Linear Accelarator and Cobalt 60 machines), electrons (Linear Accelarator and Betatron) and neutrons (Cyclotron). While photons are waves, electrons and neutrons are particulate in nature, however in terms of efficacy there is no difference between the three. Most hospitals have Linear Accelarators or Cobalt 60 machines. The efficacy of radiation treatment lies in the fact that while ionizing radiation targets all cells and causes damage to DNA, mitochondria and proteins, normal cells possess the ability to repair the damage and survive. Cancer cells experience loss of cellular function and undergo apoptosis, i.e. cell death. The therapeutic ration is related to the amount of healthy tissue to cancerous tissue exposed. The radiotherapist must use multiple beams to distribute radiation and ensure minimal exposure of healthy tissue. Two kinds of radiotherapy are generally used-teletherapy where the source is far from the site and brachytherapy where the radiation source is actually inserted in the site, also called interstitial radiation. Radiation can be offered preoperative (before surgery), postoperative (after surgery), chemoradiation (along with chemotherapy) or intraoperative (during surgery). The first step is the determination of radiation technique including fraction size, total time, multiple daily fractions, accelerated fractionation and hypofractionation. This step will determine the eventual outcome, prognosis and cosmetic results. Depending on the general condition of the patient, size of the tumour and risk factors, the doctor calculates the total dose to be given. This is generally given over 25 sittings from Monday to Friday with Saturday and Sunday being rest days to allow the normal tissue to recuperate. Subsequently 6 "booster doses" may also be given in which the scar area is subjected to a more concentrated higher dose. In case of breast cancer treatment, the common side effects include symmetry changes, moderate to severe deformity, retraction of nipple, oedema, telengectasia (red patches) and fibrosis (thickening or hardening), but it is generally well tolerated by patients when compared to chemotherapy. A newer technique being used at Nanavati Hoapital is "Hyperthermy", i.e. heating tumours beyond 43 degrees C. The technique makes use of the fact that cancer cells contain higher amounts of water than normal cells. Hence when subjected to radiofrequency, they are attacked more. The technique has been used with some degree of success along with radiotherapy in palliation. Mrinal Marathe delivered an Awareness Lecture on breast and cervical cancers, the two most commonly found cancers among Indian women, to a group of 50 commercial sex workers at Kamathipura. The programme was organised by the NGO Prerana, which runs a school for the children in the area. The group holds weekly meetings to apprise the mothers of their children's progress. Once a month the meeting takes the shape of a health forum. The women were surprised to know that multiple pregnancies and frequent abortions can increase the risk of cervical cancer and asked many questions. Prevention and Early Detection 31 camps and OPDs were held during the month of February. Out of the 18 camps held, 3 were held at Keshav Medicare Centre and Sett Minar Society; 2 each were organised for BEST Dadar and Colaba; Vishal Transport Company; AKJ Dahisar; MTNL Mahila Kalyan Samiti; and Shri Anjaneshwar Rahivashi Mandal, Worli. A total of 941 people, 429 males and 512 females were screened in the camps and clinics. 281 people were advised follow up. 13 OPDs and clinics were held during the month. 73 males and 144 females were screened. 64 people were advised follow up.
From this month our monthly report will also cover data from the Dysplasia Clinic at Cama & Albless Hopsital which is supported by CPAA. 311 patients were screened, 205 at clinics and 106 at camps. 7 cases were advised follow up. Of these, 5 cases were found to have mild dysplasia. In one case colposcopy showed CIN grade I (a precancerous condition). The case was treated locally and will be followed with repeat smears after 6-8 weeks. One case of polyp was treated with polypectomy. The pathology report showed chronic cervicitis with no malignant cells. The seventh case showed atypical squamous cells and dyskaryotic cancer in situ cells were seen. Sample of biopsy has been sent for analysis and reports are awaited. Smt. Lila Kishanchand Shahani Clinical Diagnostic Centre The Smt. Lila Kishanchand Shahani Clinical Diagnostic Centre screened 679 persons during February. 935 tests were performed, out of which 731 were pathology tests. 115 sonography, 82 x-ray and 25 mammography investigations were carried out. One case of breast cancer was detected at the Naigaon Clinic held on 5th February.
During February, 75 people were examined, of whom 25 had come for the first check-up and 50 for renewal check up. 6 claims were settled and an amount of Rs 1,57,063 was disbursed. 105 claims have been settled to date. One of our Delhi based policy holders was diagnosed with prostate cancer. 30 policyholders have been found to have cancer since the inception of the policy, out of which 19 are surviving. At Smt. Panadevi Dalmia Cancer Management Centre A total of 663 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. 318 patients availed of ambulance facilities, including 29 patients who availed of the stretcher service for long distance. 50 persons were given clothes, 50 packets of biscuits and 70 boxes of Complan and Feredol were distributed. 6 home and institutional visits were made. 15 of our patients expired during February. Donations amounting to Rs.89,050 were collected. Rs. 2,36,105 was disbursed. At Tata Memorial Hospital: Room No. 189, Golden Jubilee Block 239 patients were aided, guided and counseled by CPAA's Halima Aurangabadkar at Tata Memorial Hospital's Golden Jubilee Block Room No. 189 during February. 250 packets of biscuits were distributed. 42 patients were given clothes, 6 kgs of sweets were distributed. 12 referred cases were helped. 22 ward visits and 10 home visits were made. 7 patients were given medicines and toys were distributed to 11 children. 161 patients were given Complan and Horlicks. 297 patients utilized the ambulance facility including 24 for long distance travel. Additionally Glucon D, bedsheets, towels, packets of Surf obtained by Zakia Topiwala were distributed in Garib Nawaz.. "Can I Help You?" CPAA’s Desk at Tata Memorial Hospital’s Private OPD Jennifer Quadros helped 708 patients during February, providing literature on various kinds of cancers to 212 patients and their family members, helping 177 in filling up registration and other forms and answering questions about the hospital for 226. 16 ward visits were made. 77 patients were counseled.
239 patients were aided, guided and counseled by CPAA's Halima Aurangabadkar at Tata Memorial Hospital's Golden Jubilee Block Room No. 189 during February. 250 packets of biscuits were distributed. 42 patients were given clothes, 6 kgs of sweets were distributed. 12 referred cases were helped. 22 ward visits and 10 home visits were made. 7 patients were given medicines and toys were distributed to 11 children. 161 patients were given Complan and Horlicks. 297 patients utilized the ambulance facility including 24 for long distance travel. Additionally Glucon D, bedsheets, towels, packets of Surf obtained by Zakia Topiwala were distributed in Garib Nawaz. At Bai Jerbai Wadia Hospital for Children 19 new patients were registered during the month of February. 201 patients attended follow up of whom 67 patients are undergoing chemotherapy. 30 patients were counseled and given guidance and Vinaya Chacko visited 8 patients in their wards. 4 group meetings were held. 40 patients were given Complan packets. Palliative Care Unit at Tata Memorial Hospital CPAA's Mrinal Marathe counseled 15 patients, 9 males and 6 females during the month of February. There were 6 cases of head and neck and 1 cervical cancers, 4 cases of cancer of the abdomen, 1 case of breast cancer and 3 other cases of cancer. Counseling at Tata Memorial Hospital’s Radiation Treatment Centre CPAA's Smita Khante visits the radiation centre at TMH every Tuesday and Thursday between 10am to 2pm to counsel patients 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. 100 patients were counseled during the month. Counseling of Breast Cancer Patients at Tata Memorial Hospital Rati Datta visited 140 breast cancer patients in the General, 20 patients in Semi-Private and 13 patients in the Private ward during the month of February. Counseling at Cama & Albless Hospital Cancer Ward 39 patients were counseled and given guidance by Iva Athavia during February. Among these are 12 new patients. 9 patients were registered with CPAA. 38 ward visits were made. 5 patients were provided guidance regarding alternative therapy and 21 regarding hygiene issues. 1 terminally ill patient was referred to Shanti Avedana Ashram. Rs. 7,363 was donated towards medicines and radiation costs. 10 patients availed of the ambulance facility. Nair Hospital (Radiation Department) 76 patients were counseled and given guidance at the Counseling Cell at Nair Hospital Radiation Department by Iva Athavia during February out of which 5 were new patients. 16 ward visits were made. 20 patients were given information about alternative forms of medicines. Rs. 30,470 was donated towards radiation treatment. 40 packets of biscuits and 30 boxes of Complan were distributed. 20 patients were given clothes. The Rehabilitation Centre adopted three new patients. A total of 69 patients were helped. 3 cases of mastectomy were attended and breast prostheses were provided. 233 patients were given rations worth Rs. 26,422. Rs. 19,420 was spent on teachers' salaries, for patient education and vocational training. Rs. 1,11,574 was spent on patients' wages and Rs.20,705 was spent on welfare activities, conveyance and diet supplements. Executive Director of CPAA's Rehabilitation Centre, Ms. Manju Gupta, visited Benares in connection with the procurement of raw material for an export order of diyas. The visit was considered risky since trouble was brewing at nearby Ayodhya. While the situation was indeed tense, she managed to reach three villages where the largest suppliers reside. There, she was amazed to find that the generator the supplier had been given to provide electricity for making the raw materials had been sold and the money used to build the supplier's home. A replacement had to be provided at short notice to ensure that the work continued unhindered. 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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