... Because "Surviving Embryonal Rhabdomyosarcoma" has way too many syllables for a website name. :)

A Blog Site to offer perspective and inspiration to those who are faced with this disease.

Since I was considered a Pediatric case- i'll start with the information on that level.   Rhabdomyosarcoma is a soft tissue cancer that is typically born out of connective or muscle tissues.    It can occur in Children and Adults.    In Children there are three types-

Alveolar- shows up in the arms, legs, abdomen and typically in children in their teens

Embryonal- the most common of all rhabdomyosarcoma- it can show up in the eyes in very young children (0-5) and then in the trunk of the body in teens.

Anaplastic- this is extremely rare in children.

The way the tumor reacts to treatment in children vs. adults is different.   According to my physicians- Embyronal Rhabdomyosarcoma is a tumor that can adapt to treatment.  As such, treatment is usually very aggressive- multi-therapy including surgery.

Some statistics (in the USA):

  • 850-900 children per year are diagnosed with soft tissue sarcomas- of those 350 are Rhabdomyosarcoma
  • Of those 350 cases- 75% of them are Embryonal Rhabdomyosarcoma
  • Between 1985 and 1994- the average 5 year survival rate for Rhabdomyosarcoma was 64%
  • This is an improvement over 1975 - 1984 where the average 5 year survival was 59%
  • Between 1975 and 1995- Average Incidence Rate per Million for Embroyonal Rhabdomyosarcoma in children aged 15-19 is 1.8 per million. 
  • For same period- in children under 5 the incidence Rate is 4.4 per million for Embryonal Rhabdomyosarcoma
  • The most common location in the body for Embryonal Rhabdomyosarcoma is Head/Neck/Eyes (29%)
  • The Pelvic Soft tissue is the primary location for the tumor 11% of the time.
  • While the extremities (hands- feet) occur 6% of the time.

For Adults:

Soft tissue sarcomas form in the legs, arms, trunk and abdomen. 

The treatment regimen will likely be different than the way a childhood soft tissue sarcoma is treated.

For Stage 1 (earliest stage)-  Surgery followed by Radiation

For Stages 2 & 3 (which can indicate some spreading locally of the cancer)- Surgery, High dose radiation & chemotherapy

For Stage 4 (advanced disease- lymph nodes & distant metastasis)- Surgery followed by clinical trials with high dose radiation & chemotherapy


In relation to cancer survival based on date of diagnosis- I find I fall into the following category:

For the period 1986 - 1989 (I was diagnosed in 1986)- 41.7% of the people diagnosed with any cancer are still alive after 19 years.




Ries LAG, Smith MA, Gurney JG, Linet M, Tamra T, Young JL, Bunin GR (eds).  Cancer Incidence and Survival among Children and Adolescents: United States SEER Program 1975-1995, National Cancer Institute, SEER Program. NIH Pub. No. 99-4649. Bethesda, MD, 1999 


SEER Cancer Statistics Review 1975 - 2010, National Institutes of Health from:


General Information on Adult Soft Tissue Sarcomas from http://www.cancer.gov/cancertopics/pdq/treatment/adult-soft-tissue-sarcoma/Patient



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