Understanding Rhabdomyosarcoma
- After dismissing hand pain as minor, U.K. cheerleader Morgane Grappy was diagnosed with a rare, aggressive sarcoma at age 13. Now, 15 and cancer-free, she’s sharing her story to raise awareness.
- Rhabdomyosarcoma (RMS) is a rare form of sarcoma, a cancer that affects soft tissues, and it is seen most often in children—and it’s the type of cancer Grappy battled. The American Cancer Society (ACS) explains that sarcomas are cancers that develop in the bones and soft tissues such as muscles, fat, joint linings, and blood vessels.
- The word sarcoma refers to a large array of bone and soft tissue cancers. Those are then further broken down into more specific forms of the disease; there are more than 50 types of soft tissue sarcomas.
- Handling a rare disease can be very overwhelming, but SurvivorNet’s experts have guidance on how to seek out specialized treatment providers. More common diseases might not require the same degree of specialized attention, but finding doctors with specific expertise may be necessary for rare ones. In that case, the most effective place to find a specialist is often at academic centers and comprehensive care centers.
- The SurvivorNet Clinical Trial Finder and websites called Clinical and PubMed are great resources to use if you’re considering experimental treatment for your rare disease.
Grappy, who is now 15, cancer-free, and more appreciative of life than ever before, has gone public with her health journey to spread awareness.
Read MoreShe received her diagnosis soon after getting a biopsy taken on the palm of her hand, which revealed she had rhabdomyosarcoma (RMS), a rare form of sarcoma, a cancer that affects soft tissues, and it is seen most often in children.
Recounting how she needed to take a break from school and cheerleading to undergo treatment, Grappy admitted, “It was really hard, because I was going into the gym and supporting my team and everything, but it was just so hard watching them, knowing that I can’t do this at the moment.”
Grappy, who lost all of her hair and felt “really fatigued’ during treatment, began her fight in August 2024. This involved chemotherapy sessions two days per week on a three-week cycle, as well as daily radiotherapy for five weeks, totaling 24 sessions. In addition, she had a further surgical procedure to remove and examine lymph nodes from her underarms to check whether the cancer had spread.
By September 2025, after completing treatment and choosing surgery for reassurance despite clear scans, to make sure all of the tumor was out of her hand, Grappy was determined to be cancer-free.
Grappy has since returned to school and cheerleading, and she’s feeling “happy to be back” and in her normal routine.
Looking back on her cancer fight, she concluded, “I definitely think it taught me who my real friends are, and it just taught me to live life as much as I can, and appreciate my health.”
Understanding Rhabdomyosarcoma
Rhabdomyosarcoma (RMS) is a rare form of sarcoma, a cancer that affects soft tissues, and it is seen most often in children. The American Cancer Society (ACS) explains that sarcomas are cancers that develop in the bones and soft tissues such as muscles, fat, joint linings, and blood vessels.
There are various types of sarcomas, and rhabdomyosarcoma is unique because it starts in cells that are meant to become skeletal muscle. Prior to these muscle cells becoming fully mature, they are known as rhabdomyoblasts, and cancer can develop when these immature cells grow abnormally. Although it’s possible for rhabdomyosarcoma to affect adults, it occurs more frequently in children because it is linked to these early-stage muscle cells.
When rhabdomyosarcoma occurs in adults, it is often a more aggressive form and tends to appear in areas of the body that are more difficult to treat.
More On Sarcomas
- What Are Sarcomas? Know the Types and Symptoms of These Rare Cancers
- Dancing in the Rain: Osteosarcoma Survivor Sona Kocinsky’s Story of Bravery, Resilience and Hope
- Sarcoma Survivor Who Lost Her Leg Due to Cancer is the First Amputee to Compete in Miss World Pageant Qualifier: ‘Looking Different Doesn’t Make You Any Less’
- New Hope for People with a Rare Type of Cancer Called Epithelioid Sarcoma
Common areas where RMS develops include:
- The head and neck, including near the eye, inside the nasal sinuses, or throat, or near the spine in the neck
- Urinary and reproductive organs, like the bladder, prostate gland, or any of the female organs
- Legs and arms
- Chest and abdomen
There are two main types of RMS: embryonal rhabdomyosarcoma (ERMS) and alveolar rhabdomyosarcoma (ARMS). Other types include: anaplastic rhabdomyosarcoma and spindle cell/sclerosing rhabdomyosarcoma.
ERMS is most common in children under 5 years old, but it can occur at older ages, according to ACS. ARMS, on the other hand, does not have a typical age group. ARMS grows quickly and often demands intense treatment.
It’s unclear what type of rhabdomyosarcoma Grappy was diagnosed with, but we’re delighted she has shared her story as she’s now beaten the disease and is offering others hope in their own cancer journeys.
The ACS explains, “Most RMS tumors develop in children and teens, but they can also occur in adults. Adults are more likely to have faster-growing types of RMS that are in parts of the body that are harder to treat. Because of this, RMS in adults has a worse outlook compared to RMS in children and young adults.”
The Impact of a Childhood Cancer Diagnosis on the Whole Family: Jayne Wexler Shares Her Story
More On Sarcomas
Sarcomas are cancers that develop in the cells responsible for supporting and connecting the body’s tissues. They can form in muscles, nerves, bones, fat, tendons, cartilage, and other types of connective tissue.
RELATED: What Are Sarcomas? Know the Types and Symptoms of These Rare Cancers
“There are hundreds of different kinds of sarcomas, which come from different kinds of cells,” Dr. George Demetri, director of the Sarcoma and Bone Oncology Center at Dana-Farber Cancer Institute and Harvard Medical School, previously told SurvivorNet.
The word sarcoma refers to a large array of bone and soft tissue cancers; those are then further broken down into more specific forms of the disease, however, we will not list them all as there are more than 50 types of soft tissue sarcomas.
Sarcoma Survivor Kara Ladd found solace in Reiki, Meditation, and Energy Healing During Treatment
“Sarcomas are rare, and the cause in most patients is unknown,” Dr. Vishal Gupta, site director of Radiation Oncology at The Blavatnik Family Chelsea Medical Center at Mount Sinai, previously told SurvivorNet.
Treatment depends on the tumor location, its stage, and the type of tumor, with the best results involving being able to have the entire tumor removed. Patients may undergo chemotherapy, along with radiation therapy, to reduce the risk of the cancer coming back. Immunotherapy treatment is also possible for cases that have spread or recurred, or come back.
Coping With a Rare Disease? Here are Some Resources
All sorts of feelings of anxiety, fear, and loneliness can come with the diagnosis of a rare disease. But it’s important to know you’re not alone. Below are some helpful resources for the many people affected by lesser-known or less-researched diseases.
Academic Centers and Comprehensive Care Centers
For some rare disease warriors, community centers provide great treatment options. But for people with rare conditions, cancer or otherwise, more specialized care may be required. In that case, the most effective place to find a specialist is often at academic centers and comprehensive care centers.
In a previous conversation with SurvivorNet, Dr. Kenneth Miller, director of outpatient oncology at the University of Maryland’s comprehensive cancer center, explained what differentiates a “comprehensive cancer center” from other treatment providers.
Seeking Care at a Comprehensive Cancer Center
“Pretty much automatically, there’s going to be a team approach [to your care],” Dr. Miller said. “Surgical oncology, medical oncology, radiation oncology, and all the support services, and also wonderful pathology and radiology.”
Dr. Miller added that at a comprehensive cancer center, all of these different specialists work together as a team to help you find the best course of treatment for your specific kind of cancer.
“We call it a tumor board, a group to go through all the details of your case so you get a group of very smart people coming up with a plan together that is hopefully optimal and gives you the best chance of doing well.”
Clinicaltrials.gov and the SurvivorNet Clinical Trial Finder
Another place to turn to when you’ve been diagnosed with a rare disease, and you’re considering experimental treatment (or trying to find specialists) is clinicaltrials.gov, a database maintained by the U.S. government that compiles privately and publicly funded clinical trials conducted around the world.
Clinical trials themselves are research studies that compare the most effective known treatment for a specific type or stage of a disease with a new approach.
Clinical Trials Can Be Life-Saving for Some
Clinicaltrials.gov can help you explore possible treatment options by looking at trials that are actively recruiting. The site also provides information on some of the most specialized doctors in a specific field since they often end up leading clinical trials that advance our understanding of diseases.
By searching for your disease on Clinicaltrials.gov, you will usually come across a list of many studies. The lead researcher will be listed under the heading, “Investigators.” Lead researchers in studies on rare diseases are typically doctors who have specialized in the study of that condition.
And if you’d prefer to search for clinical trials on a more user-friendly site, try SurvivorNet’s new A.I.-driven tool built on top of clinicaltrials.gov: the SurvivorNet Clinical Trial Finder. This tool is updated daily and gives users access to more than 100,000+ individual clinical trials to help them find treatment options.
To use the SurvivorNet Clinical Trial Finder, simply answer some basic questions using our custom-designed chat feature, and we’ll send clinical trial options within your region right to your email. In simplifying the search, we hope to offer multiple opportunities for clinical trial sponsors and clinical research organizations to engage with patients.
“Clinical trials are critical to the development of new therapies, and as we live through this extraordinary revolution in genomics, immunotherapy, and targeted therapy, it’s clear that one of the most pressing needs for patients, clinical trials sponsors, and researchers is simply a better way to find patients,” SurvivorNet CEO Steve Alperin said. “Even one percent more people successfully enrolled in clinical trials can change the world.”
PubMed
Similar to clinicaltrials.gov, PubMed is another place to turn if you’re looking to research your rare disease. This website includes more than 33 million citations for biomedical literature from MEDLINE, life science journals, and online books.
If you type in your disease, you’ll see a list of studies and articles about the condition. You can even add a filter to only look at clinical trial information. By looking at the doctors associated with the published clinical trial results and other articles, you may be able to find doctors who specialize in research for your disease.
Newly-Developed Drugs
For those who’ve been recently diagnosed with a rare disease, we also want to highlight reasons for hope since there is something of a revolution going on in the development of drugs for rare diseases.
The sequencing of the human genome has enabled doctors to take new approaches to treating some of these uncommon conditions. One step you may take after being diagnosed with a rare disease is looking into the drug companies developing drugs to treat your condition.
Compassionate Use and Off-Label Use
Drug companies may be able to help patients enroll in clinical trials, and in some rare cases, they may even be able to offer “compassionate use.” Compassionate drug use makes a new drug that has not been fully approved available to a patient facing a serious illness. This only typically happens when a patient has exhausted all other treatment options, but it is an important option to understand.
Similarly, researching drug companies may be a path to “off-label” drug use. Off-label drug use involves taking a drug that has been approved for treating one condition in the hopes that it may treat another condition for which it has not yet been approved.
What You Need to Know About Survivorship
Whether you’re beginning your journey into survivorship or are a seasoned survivor, you’ll quickly learn that it’s a term with many layers. At its simplest, ‘survivorship’ signifies the state of living beyond a challenging event or diagnosis, such as cancer. More specifically, it marks the period after treatment where a patient goes from merely surviving to thriving, as they navigate their newfound lease on life.
It’s important to remember that survivorship isn’t just an end state – it’s a continuous journey. It begins the moment a person is diagnosed with a significant health condition and continues throughout their life. You might hear people say things like, “from the moment of diagnosis, you become a survivor.”
It’s a powerful sentiment that reflects the courage and resilience involved in battling a serious illness.
Being a survivor also means redefining your life while coping with the aftermath of disease and its treatment. This phase might include the challenge of dealing with physical and emotional changes, attending regular check-ups, the fear of recurrence, or the need for long-term medication. Despite these hurdles, many survivors find unique strength, growth, and transformation during this time.
Survivorship is much more than just the absence of disease—it’s a new stage of life, a rite of passage. Your journey might not have been one you would have chosen, but through it, you’ll uncover a greater understanding of yourself and what you’re capable of. Each person’s survivorship journey is unique, and how you choose to travel is entirely up to you.
Remember—navigating this new terrain called ‘Survivorship’. It might be challenging, but remember, you’re not alone. There are ample resources and support systems designed to help you along the way.
Continued Medical Care
Don’t lose sight of the importance of continued medical care – always keep your follow-up appointments and adhere to any healthcare recommendations.
Remember, embracing these coping strategies can help you navigate your way into survivorship with greater ease and renewed energy. Just remember – slow and steady wins the race! You’ve overcome huge hurdles; it’s okay to take this new stage of your life at your own pace.
Resilient learning to overcome any obstacle
Additionally, health checkups are an integral part of maintaining wellness and spotting potential health issues early. This holds true for everyone, but even more so for a person who’s in the throes of survivorship.
One of the main reasons you’ll want to maintain routine health checks is to monitor for recurrence. While the hope is always for complete recovery, there’s a possibility of the disease returning—even with successful treatment. Regular checkups allow you to keep a vigilant eye on the situation, leading to early detection and treatment if any problem emerges.
Contributing: SurvivorNet Staff
Learn more about SurvivorNet's rigorous medical review process.
