Sarcoma Stories | The Patient Story

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

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)


Kara L., Synovial Sarcoma, Stage 1B

1st Symptoms: Pain behind left knee, needle-like sensation in left foot
Treatment: Surgery to remove what was thought to be benign tumor, chemotherapy, final surgery, radiation (36 sessions)

Jillian J., Synovial Sarcoma, Stage 3

Cancer Details: 5% to 10% of sarcomas
1st Symptoms: pain in leg over 15 years
Treatment: Tumor resection, thoracotomy
Undifferentiated Pleomorphic Sarcoma

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

Cancer details: IDC is most common kind of breast cancer.
1st Symptoms: Tightness and lump in left breast
Treatment: Chemotherapy, radiation, surgery

Nicole B., Undifferentiated Pleomorphic Sarcoma, Stage 3

Cancer Details: <5% of adult sarcomas
1st Symptoms: severe intolerance to food, nausea
Treatment: Cholecystectomy, Chemo (Gemcitabine and Taxotere), Whipple surgery
Desmoid Tumor

Ashley W., Desmoid Tumor

Cancer details: Rare, <3% of all soft tissue tumors, more common in women
1st Symptoms: leg tightness, increased swelling in leg
Treatment: Chemo infusion (Methotrexate, Navelbene), oral chemo (Nexovar)

Demi D., Desmoid Tumor

Cancer details: Rare, <3% of all soft tissue tumors, more common in women
1st Symptoms: fatigue, lump in hip
Treatment: Surgery, radiation, chemo

Alicia B., Desmoid Tumor, Stage 4

Cancer details: Rare, <3% of all soft tissue tumors, more common in women
1st Symptoms: lump found in right armpit
Treatment: Chemo, radiation, targeted therapy, clinical trials, surgery, including forequarter amputation

Ewing Sarcoma

Ariane B., Ewing Sarcoma (Bone)

Cancer details: Most common in kids, young adults (teens through mid-20s)
1st Symptoms: Aching in arm, lump in forearm
Treatment: Chemo (14 rounds), surgery (of radius), radiation (36 sessions)

Brandi B.,
Ewing Sarcoma,
Stage 1B (Soft Tissue)

Cancer Details: Adult case of soft tissue Ewing sarcoma, not bone sarcoma
1st Symptoms: Extreme fatigue, lump in pelvic area
Treatment: 17 cycles of chemotherapy in-patient at hospital with (leg-sparing) surgery in between

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)

Cancer details: Tumors that start in wall of digestive tract or gastrointestinal (GI) tract
1st Symptoms: Feeling the need for constant urination
Treatment: Surgery to take out the tumor, maintenance chemotherapy (3 years)