Sebastien Daigle is 27 years old. He's in love, he's just bought a new condo and as I wait to talk to him he is watching videos on his PSP (Portable Sony Playstation). The only thing that sets him apart from most people his age is he has cancer.
"I have Ewing sarcoma," says Sebastien, as he readjusts his 6' foot 4" frame in a chair in the MUHC Adolescent and Young Adult (AYA) Oncology Clinic at the Royal Victoria Hospital - the first clinic of its kind in Canada. Tubes run from under his shirt to a bag containing his chemotherapy treatment, hanging on an IV pole next to him. "This cancer can start in bone or in soft tissues. Mine started in the collar-bone."
Sebastien was diagnosed in 2001. He had his collar bone and two ribs removed and then he went through radiation and very aggressive chemotherapy. Unfortunately, five years after Sebastian's initial diagnosis, he found out his cancer had spread to his lungs. There were three masses in his left lung and one in the right. He was immediately put under the care of Dr. Petr Kavan, founder and director of the AYA Oncology Clinic.
Each year, the AYA Oncology Clinic sees about 60 new patients between the ages of 18 and 29 - about 40 are treated at the RVH and 20 at the Jewish General Hospital, where a sister clinic has been established. Kavan is cross- appointed with the JGH - one of the few oncologists working at the two hospitals. The clinic helps ease the stress young cancer patients face by providing a compassionate and multidisciplinary care program that addresses the physical, social and psychological dimensions of their illness, while facilitating their transition from pediatric to adult care.
Kavan, Czech by origin, trained in pediatric and adult oncology and started the AYA Oncology Clinic over three years ago, less than three years after moving to Montreal to join the MUHC. He had noticed deficiencies in the transition of young cancer patients from pediatric care to adult care within the MUHC and across the entire a province. "Adolescents and young adults who were moving to adult care were literally being treated for their cancers like adults were being treated," says Kavan. "Yet research has proven that treatment results under pediatric care compared to adult care of the adolescent and young adult are inferior in the latter."
According to Kavan, even if treatment results were the same, in the long-term - 20 to 30 years later - the cancer still could come back. In young adults there is more time to develop secondary cancers. For example, with Hodgkin's disease, the patient could be treated at the age of 20 and be "cured" but statistics have shown that within 30 years there is a 30 per cent chance of another type of cancer developing. So treatment has to be adjusted to ensure the cancer is hit the hardest it can be hit, however, long-term consequences (both medical and psychosocial) need to be considered.Continued follow-up care is essential.
Psychologically and socially, adolescents and young adults are also very different from older patients with cancer. At this young age they are looking forward to CEGEP, university, careers, family. To have cancer slap you in the face at this time in life when you are seeking independence means many patients require psychological and social support. For example, only 20 per cent of children and adolescents who survive brain cancer are fully functional after their treatment. Most are not able to return to their normal lives. Therefore the treatment plan for this age group has to be tailored to their specific needs once the cancer has been vanquished. "They are referred to social workers, psychologists (psychiatrists if needed), the fertility clinic, the rehabilitation clinic," says Kavan. "They are also immediately integrated into a support group."
Dr. Lawrence Hoffman, an MUHC psychiatrist who works with adolescents and young adults with cancer, likes the fact he treats his patients in the AYA Oncology Clinic. "I have immediate access to nurses, patient information, clinicians - I like to refer to it as one-stopshopping," says Hoffman. "This is the advantage of being onsite as opposed to referring the young patients to out of hospital psychiatric services.
"I provide a psychological and social support. We try to have the best interaction with the best treatment process. I assess strengths and weaknesses and how the character of the individual can overcome the difficulties facing him and work from there in helping him cope with his situation on a day to day basis."
Christine Leblanc, MUHC pivot nurse (nurses who act as case managers, coordinating care and providing support to cancer patients and their families) of the AYA Clinic, plays a key role. She attends all meetings between the patient, family and doctor, and can put any information into more understandable terms. Leblanc also coordinates the treatment plan among different MUHC sites. Should a patient have to be admitted to the hospital, she handles the admission details and communicates with all members of the multidisciplinary team, so the young patient can save his or her energy to fight the disease. "My role is to help the patient and family navigate the healthcare system," says Leblanc. "I try to prevent them from falling through the cracks and to ease their experience with cancer chemotherapy as much as possible."
"All factors are addressed in a management plan, in coordination with many team players," says Kavan. "Care should not be carried out in isolation. Being able to work in this large McGill system allows us to work with outstanding expertise."
"I know I'm in good hands," says Sebastien, as he rubs his hand over his smooth head and prepares to leave for the day.
Julia Asselstine - MUHC
