The Phoenix-based research team was led by Dr. Wang, who is an internationally recognized testicular cancer specialist.
‘Due to their disability, patients with Down Syndrome may not convey their symptoms effectively, often leading to delayed diagnosis and poor outcomes’
Testicular Cancer and Down Syndrome
Testicular cancers (TC) are rare in the general population, accounting for 1 percent of all human cancer. TC mainly affects young men between the ages of 15 to 35 years. Down syndrome (DS) is a genetic disorder caused by the presence of an extra copy of chromosome 21. Individuals with DS had an increased risk of testicular cancer. Although the curative rate for testicular cancer is high, delay in the diagnosis of testicular cancer is associated with greater morbidity and poorer prognosis. Due to their disability, patients with DS may not convey their symptoms effectively, often leading to delayed diagnosis and poor outcomes. Dr. Wang and his team reported their experience of successful treatment of a 29-year-old man with advanced stage testicular cancer which had spread to his lungs at the time of diagnosis.
The researchers established the largest cohort of TC in patients with DS. They found there is a higher rate of delayed or missed diagnosis of testicular cancer in patients with DS, in comparison with general population and that about 50 percent of patients were found in advanced stage. The researchers identified several factors contributed to the delayed diagnosis in this special population. "This research provides very important findings. It forms the basis of future guidelines for optimal management of these patients"
said William G. Cance, MD, Deputy Director, University of Arizona Cancer Center at St. Joseph's Hospital and Medical Center.
"Since individuals with DS may not be able to effectively communicate their symptoms, this often leads to delayed diagnosis and potentially a worse outcome. We emphasize the need for improved communication skills with patients with learning disabilities, as well as conducting a thorough physical examination in these patients to avoid delayed diagnosis," says Dr. Wang who is the section chief of the Center's Genitourinary Oncology Division and also a professor of medicine at Creighton School of Medicine. Dr. Wang has served on several national oncology practice guideline committees such as The National Comprehensive Cancer Network. He also co-authored "Testicular Cancer Clinical Practice Guidelines in Oncology".
The goal for this research is to raise awareness of the increased incidence of testicular cancer in patients with DS and educate the community on the importance of early diagnosis and detection. Dr. Wang points out; "there is no advanced equipment that can replace a patient-physician relationship that is based on trust, compassion and effective communication."
Dr. Wang points out that the care of cancer patients with DS presents a challenge to doctors, nurses, families and caregivers at multiple levels. Based on their findings the research team is developing a multidisciplinary men's health/cancer program, and establishing a special algorithm and a tailored pathway to enhance patients and family experience. Going forward, the research will expand into the DS community in order to improve the current standard of care for cancer patients with learning or physical disability such as DS.