A New Rhabdo Diagnosis?

If you or a loved one just received a diagnosis of rhabdomyosarcoma, we are sorry that you’re here, but you’ve come to the right place.

Being informed that you, your child, or someone else you love has been diagnosed with rhabdomyosarcoma (rhabdo or RMS) can be frightening, depressing, and 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 as you can and be a active advocate for yourself or your family member. FocusOnRhabdo.org is here to help as much as possible. Just knowing that you’re not alone can help ease a little of your anxiety.

If you haven’t already read the first section of this website “Rhabdomyosarcoma” we suggest that you do that now. Knowing a little bit about the disease is important as you will get to know that two things are important - the speed at which you begin treatment, and the experience of those you have providing the treatment.

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 that metastasizes quickly and any delay in either diagnosis or treatment can greatly affect the long-term results.

Experience Counts - 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.Write your text here...

Experience Counts! Where to Go

Not every oncologist is a specialist in rhabdomyosarcoma. Most will not see a case during their entire career. While getting to a Sarcoma Center is the best option, it is not the only one. First, ask the doctor how many Rhabdo patients they've seen. If they say, like we were initially told "Haven't seen one, but we'll treat it like we treat all the cancers" use caution. Push the oncologist to 'partner' with one that has treated Rhabdo patients. With today's technology, your doctors can easily share all the test results and follow the protocol outlined by the Rhabdo expert. These are some of the best (but not all) Sarcoma Centers in the US.

• Memorial Sloan Kettering Cancer Center - NYC

• MD Anderson Cancer Center - Houston, TX

• Los Angeles Children’s Hospital - Los Angeles CA

• St. Jude’s - Memphis, TN

• Children’s Hospital of Philadelphia, Philadelphia, PA

• Mayo Clinic - MN

• National Cancer Institute

• Seattle Children’s Hospital

• Stanford Children’s

• University of Texas Southwestern Medical Center

• Fred Hutchinson Cancer Research Center

• Dana-Farber/Boston Children’s Hospital

If you cannot get the patient to a medical center with experience in treating RMS, please make sure that you take advantage of second and third opinions from these very special centers. RMS is not a cancer that you can just make go-away. It is an aggressive and highly metastatic disease, which once metastasizes, less than 20% of patients with metastatic RMS are able to be cured. If you are at a ‘small’ local hospital, have your doctor contact an expert!

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 FocusOnRhabdo Group on Facebook. We will try to respond to your questions.

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.

Check the list of publications on the Resources for Rhabdo Families page.