Rhabdobobbo!

... 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.

 

 

Sources:

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 

http://seer.cancer.gov/archive/publications/childhood/childhood-monograph.pdf

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

http://seer.cancer.gov/csr/1975_2010/results_single/sect_02_table.09.pdf

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

 

 

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