Sarcoma Patient Stories

What is sarcoma? Sarcomas account for over 20% of all pediatric solid malignant cancers and less than 1% of all adult solid malignant cancers. The vast majority of diagnosed sarcomas will be soft tissue sarcomas, while malignant bone tumors make up just over 10% of sarcomas. (National Institutes of Health).

Explore below for in-depth sarcoma stories from our community members who share everything: first symptoms, treatment timeline, to navigating life with cancer.

• Soft Tissue Sarcoma Stories
  • Synovial
  • Undifferentiated Pleomorphic
  • Desmoid Tumor (benign so not technically cancer)
• Ewing Sarcoma (bone and soft tissue)
• Gastrointestinal Stromal Tumor (GIST)

Soft Tissue Sarcoma

Soft tissue sarcoma is a broad term for cancers that start in soft tissues (muscle, tendons, fat, lymph and blood vessels, and nerves). These cancers can develop anywhere in the body but are found mostly in the arms, legs, chest, and abdomen. (National Cancer Institute)

Synovial

Kara L., Synovial Sarcoma, Stage 1B



Symptoms: Pain behind left knee, needle-like sensation in left foot
Treatments: Surgery to remove what was thought to be benign tumor, chemotherapy, final surgery, radiation (36 sessions)
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Jillian J., Synovial Sarcoma, Stage 3



Symptom: Pain in leg for over 15 years
Treatments: Surgeries (tumor resection, thoracotomy)
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Marisa C., Synovial Sarcoma, Stage 4



Symptom: Small bump on the foot (stable for years, then grew during pregnancy), pain when pressed

Treatments: Surgeries (below-knee amputation, pulmonary wedge resections, segmentectomy), chemotherapy, radiation (lungs & hip)
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Undifferentiated Pleomorphic Sarcoma

Monica H., IDC, Stage 2B & Undifferentiated Pleomorphic Sarcoma



Symptoms: Tightness and lump in left breast
Treatments: Chemotherapy, radiation, surgery

Nicole B., Undifferentiated Pleomorphic Sarcoma, Stage 3



Symptoms: Severe intolerance to food, nausea
Treatments: Surgeries (cholecystectomy, Whipple), chemotherapy (Gemcitabine and Taxotere)

Desmoid Tumor

Ashley W., Desmoid Tumor



Symptoms: Leg tightness, increased swelling in leg
Treatments: Chemotherapy infusion (Methotrexate, Navelbene), oral chemotherapy (Nexovar)
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Demi D., Desmoid Tumor



Symptoms: Fatigue, lump in hip
Treatments: Surgery, radiation, chemotherapy
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Alicia B., Desmoid Tumor, Stage 4



Symptom: Lump in right armpit
Treatments: Chemotherapy, radiation, targeted therapy, clinical trials, surgery, including forequarter amputation
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Ewing Sarcoma

Ariane B., Ewing Sarcoma (Bone)



Symptoms: Aching in arm, lump in forearm
Treatments: Chemotherapy (14 rounds), surgery (of radius), radiation (36 sessions)
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Brandi B.,
Ewing Sarcoma (Soft Tissue), Stage 1B



Symptoms: Extreme fatigue, lump in pelvic area
Treatments:17 cycles of chemotherapy in-patient at hospital with (leg-sparing) surgery in between
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Gastrointestinal Stromal Tumor (GIST)

Gastrointestinal stromal tumor is a disease in which abnormal cells form in the tissues of the gastrointestinal tract. Genetic factors can increase the risk of having a gastrointestinal stromal tumor. (NCI)

Louis D., Gastrointestinal Stromal Tumor (GIST)



Symptom: Feeling the need for constant urination
Treatments: Surgery to take out the tumor, maintenance chemotherapy (3 years)
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