Robyn

Her Son's Story

Birthday: October 1983

Location: South New Jersey, USA

Diagnosis Date: August, 2005

Type of Sarcoma: Alveolar Rhabdomyosarcoma

Tumor Site: Right Clavicle/Right Rib

Age at time of Diagnosis: 21 years

Hospital:
Pennlsylvania Hospital (University of PA Health System)

Oncologist:
Dr. A. Staddon

Surgeon:
Dr. Fox (Biopsies)

Diagnosis Experience:
My Son's cancer presented as a lump (fortunate). An X-ray of area-showed nothing. A local orthopedic surgeon performed an MRI without contrast MRI with contrast. 'I don't know what it is; but it won't kill you'
Orthopedic Surgeon-Dr. Fox at PA. Hospital performed a Full Body Scan, CT scan Needle Biopsy, Open Biopsy; Thoracic surgeon-HUP-additional spot on CT scan- second open biopsy. No surgery on tumor-treated with Chemo to shrink at the Joan Karnell Cancer Center by Dr. A. Staddon.
About a month and a half until treatment started-chemo-agonizing-tried to get them to 'hurry up & start - give him something, anything'. Two additional opinions (MSK & CHOP) in this time frame. Every new test seemed to bring worse and worse news until chemo started.

Treatment:
Chemo: Irinotecan & Vincristine (1 day)-5days first week & one-day second week-5 weeks (98% gone) Cytoxan, Adriamycin, Vincristine-alternating with Ifex, Etoposide, Mesna-5 days per week 4 cycles each. Scans-all clear. Repeated these alternating cycles again then back to Cpt-11 (irin.) & Vincristine.
Within two weeks, we couldn't feel the lump in the original site. Many setbacks and delays - 3 or 4 hospital stays - 4 or 5 blood transfusions. Son is now back in college and working part-time. His parents always worry; he 'seems' to only worry during scans and report of scans. He's very private - won't talk about his experience. Treatments ended in August 2006.

Recovery:
Only thing that is left is that his hair hasn't grown back fully and he gets very loud hiccups. No PT, but he takes many vitamins and supplements and we try to get him to have more fruits and vegetables. Even more anxious now than he was before - always had Anxiety Disorder.

Life Now: He sees his friends who supported him throughout his trials and is looking for girls on paid websites. Has been getting better grades than ever before; should graduate from college in Dec. 2008. Insurance will become a problem after the summer semester. He also works part-time.

Thoughts: Push for diagnosis as soon as possible; go to a knowledgeable person for sarcomas (experienced); get at least one other good sarcoma opinion. Don't stop searching when someone tells you they don't know what it is. Be treated at a Sarcoma center.

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