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Information for Families Dealing With A New Rhabdo Diagnosis

Being informed that you, your child, or someone else you love has been diagnosed with rhabdomyosarcoma (rhabdo or RMS) can be totally overwhelming. Since it is a rare form of cancer, many pediatricians and primary care physicians may not be prepared to talk about it in any depth. It will be up to you to become as knowledgeable about this disease as you can, and Focus On Rhabdo is here to help you as much as possible. Just knowing that you are not alone can help ease a little of your anxiety.

Rhabdomyosarcoma is a type of sarcoma. Sarcoma is cancer of soft tissue (such as muscle), connective tissue (such as tendon or cartilage), or bone. Rhabdomyosarcoma usually begins in muscles that are attached to bones and that help the body move. Rhabdomyosarcoma is the most common type of soft tissue sarcoma in children. It can begin in many places in the body.1

Begin Treatment Quickly
Perhaps the most important advice that I personally received, was to begin treatment immediately. Don't worry about which is the best treatment, just begin. Once treatment has begun you can continue your research and, with the help of your oncology team, adjust the treatment protocol. Rhabdo is a very fast growing cancer and a delay in diagnosis or treatment can greatly affect the long-term results.

If You Can - Get To A Sarcoma Center
Since rhabdo is so rare, it is best treated in a Sarcoma Center with specialists who have dealt with this type of disease before. Most physicians will never see a case of rhabdo let alone treat one. Sarcoma specialists have the experience in this most specialized disease type. There is an excellent article titled "What is Sarcoma" on the Liddy Shriver Sarcoma Initiative (Sarcomahelp.org) website here. Additionally, there is a comprehensive listing of Sarcoma Centers around the globe that you can find here.

Read and Learn
There are two booklets available on-line that should be read. Both are written for the families of newly diagnosed rhabdo patients. The first is titled "Rhabdomyosarcoma - A Booklet for Parents. What you Need to Know. It can be found here. The other, "The ESUN Guide for the Newly Diagnosed" can be found here.

Get Support
Once a diagnosis has been established, the journey begins, and it is not an easy journey. Join a support network! If your hospital or clinic has a cancer family support group, join it. There is an excellent on-line support network that is part of ACOR - Association of Cancer Online Resources - you can join it (it is free) here

While Focus On Rhabdo cannot answer questions that are specific to a patient or a treatment plan, general questions on rhabdo can be posted on the RhabdoTalk Forum. They will be answered by a member of our Advisory Council.

 

References:


1. National Cancer Institute, Childhood Rhabdomyosarcoma Treatment (PDQ®)