The signs and symptoms of a soft tissue sarcoma largely depend on the location of the primary tumor (where the tumor first grew) and whether or not the disease has metastasized (spread) to other areas. Often, a lump or mass is one of the first signs of a soft tissue sarcoma.
Cassandra had been complaining for a month of pain in her left knee while sleeping at night. I brought this to the attention of her pediatrician at a well-child visit. The doctor looked her over and said that it was probably growing pains, and to elevate her leg in the evening and see if that might help. Following his advice, I began to elevate her leg at night with a pillow—a practice that my mother used when I had similar pains in my legs as a child. This didn’t help alleviate the pain, though, and in fact, it seemed to intensify as days went by. One week later we were at a local coffee shop and Cassandra had to go to the bathroom. I went in with her, and while I was helping her with her tights I noticed a large lump on her left buttock.
Primary tumors located in the head or neck region can cause many different signs and symptoms. Tumors in the tissues around an eye can cause the eyelid to droop. The eye may appear to protrude or bulge, and a child may also develop double vision.
I called a dear friend who had graduated from being our babysitter during her four years of college to her current status as second-year medical student. I told her I needed to do some research, listed Joseph’s symptoms, told her what the ophthalmologist said, then asked about tumors in the eye area. She opened her cancer book and under orbital tumors found a word—a cancer—I’d never heard of before. “Okay,” she said, “this is the most common orbital tumor in children, it causes ptosis (drooping eye) and proptosis (protruding eye), hits kids most commonly between the ages of 2 and 6, is more common in boys than in girls, and is highly malignant.”
As she described these symptoms, she was literally describing Joseph’s face. She spelled the word out for me, and I still have the piece of paper on which I took those notes, on which I first wrote the word “rhabdomyosarcoma.”
A soft tissue sarcoma in the head can paralyze cranial nerves controlling eye movement or sight, causing blurred vision, blindness in one eye, or one side of the face to droop. Tumors that arise in the sinus area or the middle ear can cause nasal obstruction, sometimes resulting in discharge and intermittent bleeding. Also, the child’s voice may sound different.
Rhabdomyosarcomas are often found in the bladder and prostate. Symptoms include blood in the urine, difficulty passing urine, urinary obstruction, and pain. Prostate tumors tend to be found as a large mass, sometimes accompanied by constipation.
Boys with tumors in the paratesticular area (the area near the testicles) may have a painless enlargement of the scrotum.
Vaginal tumors (usually seen in infants) may look like a bunch of grapes at the vaginal opening, often accompanied by vaginal discharge. Tumors originating in the cervix or uterus are diagnosed more frequently in older girls, and they usually consist of a mass that can cause vaginal discharge.
Tumors that occur in the extremities and trunk press on nerves or muscles, resulting in swelling, pain, and redness in the affected area. These masses are usually hard and not tender to the touch. Invasion of the disease into peripheral nerves can cause pain or weakness in the pelvis and extremities. Tumors that develop on the chest wall can cause breathing difficulties, and an abdominal mass can block the gastrointestinal or genitourinary tract.
The pediatrician looked concerned as she examined Cassandra and told me that it was some type of “mass.” I didn’t think the word “cancer” at all. She made an appointment for her to see a surgeon at Children’s Hospital later that afternoon. I knew that this was something serious, but had no idea just how bad until later that evening when the surgeon gave me the results of the CT scan [computerized tomography scan]: cancer in her left buttock, with metastatic lesions in her lungs. When I heard this news, I was reeling. My sister had died just 2 years before of breast cancer, and my younger brother had just finished treatment for testicular cancer. I thought, “This can’t be happening again!”
Table of ContentsAll Guides
- 1. Diagnosis
- 2. Bone Sarcomas
- 3. Liver Cancers
- 4. Neuroblastoma
- 5. Retinoblastoma
- 6. Soft Tissue Sarcomas
- 7. Kidney Tumors
- 8. Telling Your Child and Others
- 9. Choosing a Treatment
- 10. Coping with Procedures
- 11. Forming a Partnership with the Medical Team
- 12. Hospitalization
- 13. Venous Catheters
- 14. Surgery
- 15. Chemotherapy
- 16. Common Side Effects of Treatment
- 17. Radiation Therapy
- 18. Stem Cell Transplantation
- 19. Siblings
- 20. Family and Friends
- 21. Communication and Behavior
- 22. School
- 23. Sources of Support
- 24. Nutrition
- 25. Medical and Financial Record-keeping
- 26. End of Treatment and Beyond
- 27. Recurrence
- 28. Death and Bereavement
- Appendix A. Blood Tests and What They Mean
- Appendix B. Resource Organizations
- Appendix C. Books, Websites, and Support Groups