Silent No Longer: Supporting Children and Adolescents Affected by Gynecologic Cancers
I give a lecture on humanism. In that lecture, I talk about a patient who was diagnosed with ovarian cancer in 1968. She underwent a total abdominal hysterectomy and bilateral salpingo-oophorectomy for a malignant germ cell tumor. On the radio each day, as she drove to and from the hospital for treatments, the poweful song "The Sounds of Silence," by Paul Simon played over and over. I ask the audience, “what do the words mean to you?” The majority of the time they remain silent.
I then tell them what those words meant to me. I was the patient and I was 9 years old.
It was a time of darkness for many. It caused marital discord, sibling jealousy and fear. The silence ended 4 1/2 years later when I was rushed to the emergency room with a bowel obstruction. I found out from the intern that day, at age 14, that I was a cancer survivor, an infertile one to be exact. As Simon writes, "In restless dreams I walked alone"-forever different from my friends...Always trying to be like them.
I am lucky. A grade 2 immature teratoma (prior to the development of chemotherapy ) and I survived. I’ve spent my life working through these times and devoted my career to caring for patients with chronic problems.
"The Sounds of Silence" was written in the sixties, a time when society lacked in communication. We’ve come a long way since then. Communication between cancer survivors and healthcare professionals has improved, but we have a long way to go.
Silence ... No longer ... We are here for each other, in friendship, support, research and hope. A coworker, Barbara Getty, and I, have formed an association for children and adolescents with gynecologic malignancies. We have met with several organizations, as well as oncologists, as we explore what else is needed. The initial focus has been on education. A website was developed for patients and families to provide education on germ cell tumors, chemotherapy, and sexuality needs. Our next goal is to raise funding for research and the development of a worldwide registry for children and adolescents with gynecologic cancers.
While my own cancer experience may differ from yours, there are similarities in many of the situations I describe. We are all survivors who can improve our own lives with communication. Please visit www.cgynca.org to learn more.