In France there is a law stating that before entering a clinical trial, a patient is required to give their informed consent to participate in the trial. "This paper should only be signed if three conditions are met," advised Sylvia Achin, member of a team responsible for reviewing clinical protocols for the French League Against Cancer. "First, the objectives and effects of the treatment have to be thoroughly explained. The time period involved needs to be defined, and the patient must be assured that all data will remain anonymous, that is, that personal information will remain confidential."
A two-time cancer survivor and 37 years of hospital experience make Sylvia Achin an authoritative patient advocacy spokeswoman. " 'I'm going to die', is the first frightening thought that crosses a patient's mind the moment their physician diagnoses them with cancer," Sylvia said at a press conference at the European Society for Medical Oncology Congress today (19 October 2002).
Being diagnosed with cancer is a terrible moment. Physicians should dedicate ample time to carefully explain the situation and to answer patients' questions. "The news is so devastating that you come out of the doctor's office not remembering much of what he said. Being accompanied by a family member or a friend is useful to both the physician and the patient," added Sylvia.
Once treatment begins, physicians need to explain the general classical effects of the therapy, like hair loss or nausea, in a very clear and honest way, using everyday terms. Patients will often break down and cry in their offices. "Knowing that they may lose their hair is not easy for patients to accept, but it gives them the opportunity to cut it very short, as opposed to waking up one morning to find most of your hair on your pillowcase," explained Sylvia.
Besides dealing with their illness, life for cancer patients is mostly uphill. Fatigue is a common symptom that cannot be seen, but is felt quite acutely by patients. Family members are not always capable of understanding just how tiring cancer treatment is. Patients returning to work often feel 'very small', because colleagues begin treating them as if they are no longer capable of fulfilling all of their responsibilities.
"For a woman, breast cancer poses the most difficult emotional burden. Many women go to the operating table not knowing whether just the tumour or the entire breast will be removed. Having a mastectomy at 40-50 years of age, when your body structure has changed, is cruel and very hard to accept," emphasised Sylvia.
She notes that some patients risk losing even their partner if he/she cannot support the changes and consequences of the disease. "Your priorities completely change when you are faced with a life-threatening disease, like cancer," Sylvia says.