TFD is an open support group founded in 2007 for parents and survivors of congenital fetal, infant, and childhood germ cell tumors.

We know first hand what is ahead of you, and we are here to help you.  Some of us are parents of babies born with these tumors.  Some of us are adult survivors of fetal and childhood tumors.  We know the fear and grief;  the challenges of pregnancy, surgery, chemotherapy, surveillance, and relapse; and the joys of birth, recovery, remission, life, and even cure.

Although sacrococcygeal teratoma (SCT) is the most common pediatric germ cell tumor (GCT), there are others.  Teratoma alone includes:  mature, immature, benign, malignant, cystic, solid, fetus in fetu, fetiform teratoma, dermoid cyst, struma ovarii, teratoma with malignant transformation (TMT), and growing teratoma syndrome.  Other GCTs are endodermal sinus tumor / yolk sac tumor, embryonal carcinoma, choriocarcinoma, germinoma / dysgerminoma / seminoma, polyembryoma, gonadoblastoma;  also any mixed germ cell tumors.  Some GCTs are malignant (cancer), some are benign.  Because even benign GCTs have malignant potential, all GCTs require followup by an oncologist. SCT sometimes is misdiagnosed as ependymoma or as myelomeningocele (spina bifida, a neural tube defect).  Outside the sacrococcyx, locations include retrorectal, presacral, retroperitoneal, gastric, ovary, testis, mediastinal, cardiac, cervical (neck), tongue, and central nervous system (spine, skull base, brain).  Most children diagnosed with GCT will have surgery, a few will also have chemotherapy and/or radiation.  Most children will survive, and many will have no long term or late effects.

 

This group is not moderated: you can subscribe without approval from a moderator and, once subscribed, post without approval from a moderator.  This group is also public: anyone can read what you post, now and in the future.  Your privacy is important.  You don't need to subscribe in order to read, only to post.  You don't need to give your name, your child's name, where you live, or any other personal details, unless you choose to.  Pseudonyms are okay.