The Diagnosis Unknown to Many: Childhood Gynecologic Cancer

Editor’s Note: This piece was submitted by a contributing writer and does not represent the views of CURE Media Group.

Hope Haefner was diagnosed with ovarian cancer in 1968, when she was just nine years old. Her symptoms and signs were nausea, vomiting and abdominal pain, so appendicitis was the preoperative diagnosis. However, the surgeons did not find an inflamed appendix, but a malignant ovarian tumor. It was a grade 2 immature teratoma.

This is a rare cancer. It is in the germ cell tumor category of ovarian cancers. In 1968, the treatment performed was a total abdominal hysterectomy and bilateral salpingo-oophorectomy. Today, conservative surgery (removal of the ovary and fallopian tube) and chemotherapy are the usual treatments for this type of tumor. However, back in the 1960s, chemotherapy for malignant germ cell tumors was not routinely available.

Her recovery was complicated by a bowel obstruction, as well as cardiac arrest. To this day, she tells everyone how very lucky and fortunate she is to have survived. It was a long journey, but a journey that has given her empathy for others and a drive to bring knowledge of this type of cancer to the forefront of patient care and research.

This journey, not surprisingly, also led Hope into the medical field. In 1985, she graduated with a medical degree from the University of Michigan Health System and became an OBGYN. She currently is a professor in the department of Obstetrics and Gynecology at the University of Michigan. When she lectures on her reasons behind entering this profession, she is always amazed at how many of the audience participants and their family members have been touched by cancer. Hope routinely asks for suggestions from these audiences to improve the recovery process of children affected by gynecologic malignancies. Suggestions have included creating a positive atmosphere, addressing patient’s psychological needs and implementing scheduled activities.

As a 48-year survivor of a childhood ovarian cancer, Hope is dedicating the last part of her career to helping the children and adolescents with gynecologic cancers. These patients have emotional and physical needs. As the executive director of the Childhood Gynecologic Cancer Association, she is working on promoting education and research in gynecologic malignancies in children and adolescents. The most common gynecologic cancer in children is ovarian cancer, but fallopian tube, vulvar, vaginal and uterine cancers can also occur in children and adolescents.

The organization’s website, www.cgynca.org contains information for patients and health care providers on the cancers that occur in this population. Educational resources for patients and families, tumor pictures and brochures are easily accessed on the website. When the Childhood Gynecologic Cancer Association is notified of a child diagnosed with a gynecologic malignancy, a gift bag is sent to the patient. Their next goal for the organization is to raise money to fund an international registry to obtain information on the types and numbers of gynecologic cancers in children and adolescents worldwide.

While these conditions are rare, when they do occur, they affect one’s future forever.