On 10 October 2011, an entire day devoted to the adverse effects of breast cancer treatment in the French-speaking part of Switzerland was organized at the University Hospital of Geneva (HUG) by the Breast Cancer Network: “Survive and Live”. It is the first time that such an event, focusing on the adverse effects of breast cancer treatment, was held in Geneva. More such events should be organized, also for other cancers and diseases, because an open discussion which includes care-givers, patients and members of support groups can add to the understanding and compassion of all parties concerned.
The day was organized around themes concerning adverse effects, with moving testimonies of persons who have suffered these effects, presentations by experts, a discussion panel comprised of doctors, care-givers and members of support groups, and interaction with the public. Mrs. Isabelle Moncada, journalist and producer of the Suisse Romande Television health program,“36.9”, led the discussions. Themes included: physical integrity and identity, functional capacity, dental and oral side effects, sexuality and fertility, depression, fatigue, vitality, and problems of memory and concentration. There were also presentations on treatment possibilities with complementary medicine, projects for readapting cancer treatment to address side effects, the « Wilsdorf Logbook” (Carnet de Bord), source of the statistics cited in the presentations. A public lecture was held in the evening: “An oncology for maintaining quality of life ».
The Wilsdorf Logbook, launched in 2005 as a pilot project (in which I participated) allows better understanding and treatment of the adverse effects of breast cancer. The information gathered from patients and care-givers serves as a basis for the initiation of research and actions concerning the side effects of cancer treatment and for alleviating those which are most incapacitating.
I attended several presentations. Geneva has the highest breast cancer rate in Europe. Each day, a woman is diagnosed with this cancer. It is the first cause of mortality among women between ages 40 and 50.
Dr. Dominique Gros, honorary consulting physician at the University Hospital of Strasbourg, spoke about the harmony which should exist between care-giver and patient and about the period following treatment : finding oneself alone, the way affected women are regarded (cured, in remission, survivor, heroine, person with cancer), complete healing (body, spirit, soul), the degree of anguish generated by fear of recurrence, the realization of self-esteem (need for social and affective security).During the discussion on physical integrity, weight-gain was mentioned as an adverse effect of hormone treatment which, along with other treatments, changes the body’s metabolism. Certain patients interrupt hormone treatment because of weight-gain and other side-effects. Doctors and care-givers do not talk enough about nutrition and the importance of physical exercise as ways to help these persons.
Concerning mobility, a young working woman gave testimony. Ten years after surgery for breast cancer, she had still not regained complete mobility in one arm. Sometimes, a long time after surgery, women cannot carry their children or drive a car. Physiotherapy undertaken immediately after surgery to avoid lymphedema, as is practiced at the HUG Maternity, is very important, even only for removal of the sentinel node. This was my case. The practice was established by Dr. Peter Schäfer who was my surgeon. Women (38% according to the Logbook) complain about lymphedema after radiotherapy. Other effects on mobility include shoulder problems. Arm exercises are strongly recommended: Nordic walking, swimming, rowing or gym exercises (group activities also have a beneficial effect on morale.)
There was a lively discussion about fatigue. A woman in her thirties, suffering from fatigue for a long time after treatment, gave testimony of the lack of understanding of her entourage. One has to put life projects on hold, even abandon them. The woman could not work. Her request for disability insurance was refused. The insurance doctor said she could work full time. There are those who do not dare to announce their illness to their employees. Caregivers focus on pain and nausea, often neglecting complaints about fatigue. They should ask their patients: “what are the symptoms which bother you the most and what impact do these have on your life?” 88% of women complain about fatigue, however, only 56% of doctors consider this side-effect important. It is very important to talk about this to one’s doctor. The causes of this fatigue include the illness itself, treatment, muscle loss, sleep loss, nutrition, and depression. Psychotherapy is sometimes useful. It is disturbing that one of the doctors talking about this issue mentioned “chemical molecules” (medication) to combat depression which to me would seem to have a negative impact on a body already assaulted by cancer treatment.
Chemotherapy and hormonal changes can cause cognitive troubles and lower the quality of life. This was the complaint of between 15 and 50% of patients.
The issue of communication during treatment was taken up. There is the tendency of “ultra-medicine” to erect barriers between doctor and patient. This is a medicine dominated by men. Consultations are often too short. The lack of harmony between patient, therapist and one’s entourage can have a negative impact on treatment results. One must take the time to listen to the patient’s point of view. Communication is having goals and language in common. During the break, I met a member of a cancer support group. She told me that in certain countries (such as Ireland), a caregiver/nurse accompanies the patient from the beginning to the end of treatment because moral support is very important.
The last presentation that I attended was on complementary therapies. In Switzerland as of 2012 for a provisional period of six years, certain therapies will be reimbursed by the obligatory health insurance: neural therapy, anthroposophic medicine, phytotherapy, homeopathy, and traditional Chinese medicine. These therapies are effective against fatigue, anxiety and sleep disturbances. Acupuncture can be effective against fatigue and can strengthen immunity.
by Meris Michaels
by Meris Michaels