Has your child developed a strange lump? Let's talk about Rhabdomyosarcoma

It's normal to feel very scared when you see something unusual, like a lump or swelling, on your body or on the body of your little one. At such times, we think of many things. Today we are going to talk about a type of cancer that may be like that, but is a little rare. That is rhabdomyosarcoma. Although the name may sound a little complicated when you hear it, let's talk about it simply.

What is Rhabdomyosarcoma?

Simply put, rhabdomyosarcoma is a type of cancer that develops in the soft tissues of our body. It most commonly affects the muscles that are attached to our skeleton (called skeletal muscles ). It is most common in children and young adults , but it can also affect adults. It is estimated that between 400 and 500 people in the United States are diagnosed with this condition each year. This means that it is a very rare cancer . There are different types of rhabdomyosarcoma. Some types are very aggressive, meaning they spread quickly and are difficult to treat. With good treatment, sometimes the condition can go away completely (called remission). However, sometimes the cancer can come back (called cancer recurrence).

What are the main types of this disease?

There are several main types of rhabdomyosarcoma. Let's take a look at what they are:

1. Embryonal Rhabdomyosarcoma `(Embryonal Rhabdomyosarcoma)`

This is the most common type . It occurs in children rather than adults. It usually occurs in areas around the head and neck. For example, in the membranes that cover the brain and the eye socket (where the eye is sunken). There are also subtypes. Some can develop in hollow organs such as the bladder and vagina (called ``Botryoid Rhabdomyosarcoma''). Another subtype can develop around the testicles (sperms) of a child (called ``Spindle Cell Rhabdomyosarcoma'').

2. Alveolar Rhabdomyosarcoma `(Alveolar Rhabdomyosarcoma)`

This type is usually seen in older children and young adults, between the ages of 20 and 35. It most commonly occurs on the arms, legs, or torso. This alveolar type is very severe and spreads quickly . It starts spreading almost immediately after it develops.

3. Pleomorphic Rhabdomyosarcoma `(Pleomorphic Rhabdomyosarcoma)`

This type is usually seen in adults over the age of 50. Although it can develop anywhere on the body, it is most commonly seen on the legs . It can also develop on the arms, chest, abdomen, and some parts of the head and neck.

What are the symptoms of rhabdomyosarcoma?

The symptoms of this disease vary depending on where the cancer is located . For example, if a child has a tumor like this in their ear, they may experience symptoms such as earache and fluid draining from the ear. If a tumor develops behind the eye, the eye may appear swollen and bulging. Here are some other examples:

• In the case of a muscle in an arm or leg: a lump or swelling that is accompanied by pain.
• Abdominal (`(Abdomen)`): stomach cramps , constipation, vomiting .
• Bladder and urinary tract: Blood in the urine (`(Hematuria)`), difficulty urinating.
• Nasal cavity: Symptoms similar to nosebleeds (`(Epistaxis)`), sinus infections (`(Sinus Infection )`).
• Vaginal: Something like a lump coming out of the baby's vagina.
• Testicular nodules: A rapidly growing lump around a child's testicles .

Important: These symptoms can sometimes be caused by less serious conditions. Things like nosebleeds, vomiting, and lumps in the body are not always caused by rhabdomyosarcoma. However, if you or your child have these symptoms, if they persist or seem to get worse, you should definitely see a doctor .

What are the causes of this disease?

Rhabdomyosarcoma is caused by genetic mutations in our muscle cells (immature muscle cells) that cause them to become cancerous and divide rapidly, forming tumors. Certain genetic mutations, such as the PAX/FOX01 fusion gene, can cause some types of rhabdomyosarcoma. Also, people with certain hereditary conditions are at higher risk of developing the disease. Some of these conditions include:

• Li-Fraumeni syndrome
• Beckwith-Wiedemann syndrome
• Neurofibromatosis
• Costello syndrome
• Cardiofasciocutaneous syndrome `(Cardiofasciocutaneous syndrome)`

How is rhabdomyosarcoma diagnosed?

When you or your child sees a doctor, they will first ask about your symptoms. They will also ask if anyone in your family has any of the hereditary conditions mentioned above, as this can give you an idea of ​​your risk of developing the disease. They will then perform a physical examination to look for any signs of the disease, such as lumps and swelling. In addition, they may do the following tests to help diagnose the condition:

• CT scan `(Computed Tomography (CT) scan)` or MRI scan `(Magnetic Resonance Imaging (MRI) scan)`
• PET scan `(Positron Emission Tomography (PET) scan)`
• Bone scan
• Lumbar puncture (a test in which a small amount of fluid is taken from the spinal cord)
• Bone Marrow Biopsy
• A biopsy (taking a small piece of tissue from the tumor for examination)
• Special tissue tests such as immunohistochemistry
• Cytology tests

Can this be detected with blood tests?

No, there is no direct blood test that can diagnose rhabdomyosarcoma. However, your oncologist may order blood tests after the diagnosis. For example, a complete blood count (CBC) may be done to see if the disease has spread to the bone marrow. Blood tests are also done during treatment to see how your body is responding to treatment.

Rhabdomyosarcoma Risk Groups

When children develop rhabdomyosarcoma, oncologists classify the disease into risk groups. This classification is based on three main factors: 1. Tumor stage: Doctors use a system called the TNM Staging System to determine this. T refers to the size and location of the tumor, N refers to whether the cancer has spread to the lymph nodes, and M refers to whether the cancer has spread to other parts of the body. 2. Clinical group: This is determined after a biopsy or surgery. For example, if the tumor can be completely removed by biopsy or surgery, it is classified as Group I. These groups range from 1 to 4. 3. Genetic changes: Whether the PAX/FOX01 fusion gene mutation is present. These risk categories are called low risk, intermediate risk, and high risk . Your child's medical team uses this risk category to plan treatment, estimate the chance that the cancer will come back after treatment, and determine what to expect after treatment (prognosis).

The process of determining this risk category is a bit complicated. You may not immediately understand all the information used. So, don't hesitate to ask your child's medical team for clarification . They will be happy to explain everything to you.

What are the treatments for rhabdomyosarcoma?

Treatment options vary depending on the type of disease. Because rhabdomyosarcoma is a rare disease, if you or your child has this condition,Ask your medical team if you can participate in a clinical trial . Oncologists typically use these treatments:

• Surgery
• Radiation Therapy
• Chemotherapy (chemotherapy)

Can rhabdomyosarcoma be completely cured?

Sometimes, yes, treatment can cure rhabdomyosarcoma . This is called a ``remission'' of the disease. This means that the symptoms disappear and no cancer cells are found on tests. Most of the time, this cure is permanent, but sometimes rhabdomyosarcoma can come back. In general, adults are less likely to recover completely from this disease than children .

What is the life expectancy of someone with rhabdomyosarcoma?

There is no exact figure for how long someone with rhabdomyosarcoma will live. However, researchers keep track of the percentage of people who are alive five years after being diagnosed with rhabdomyosarcoma. This survival rate depends on many factors, including the type of disease, the risk group, and whether the disease comes back after treatment . Overall, 70% of children with this disease are alive five years after diagnosis. For adults, the five-year survival rate is about 20%.

Regardless of your situation, it's important to remember that these survival rates are estimates based on the experiences of others who have been treated for rhabdomyosarcoma. If you or your child has this condition, it's normal to want to know what the future holds. If so, your medical team is the best person to talk to about it .

How can I take care of my child and myself?

Cancer can have a big impact on your daily life. Rhabdomyosarcoma is no exception. If you or your child has this condition, you may feel very stressed and exhausted. Here are some suggestions that can help during this time:

• Consider Palliative Care: Cancer symptoms and treatments can be difficult to cope with. Palliative care is a treatment that helps improve quality of life, from reducing symptoms to providing emotional support.
• Talk to a Child Life Specialist: Cancer can turn a child's life upside down. It can take them away from friends and everyday activities. Living with cancer can be lonely for a child who is going through an experience that their friends can't understand. Child life specialists are specially trained health workers who help children cope with medical experiences.
• Take a break:Cancer treatment – ​​and caring for a child with cancer – can be very tiring. If you are undergoing treatment, try to rest whenever you need to, not just when you have time. If you are caring for a child with rhabdomyosarcoma, ask your doctor about respite care programs and services.
• Consider Cancer Survivorship: Rhabdomyosarcoma can come back after treatment. If you are concerned that the cancer will come back for you or your child, ask your doctor about support services for surviving cancer.

When should I contact my oncologist?

If you or your child are receiving treatment, contact your doctor if the side effects of the treatment are worse than expected . Depending on your condition, your doctor may have given you specific instructions about symptoms that may indicate that your rhabdomyosarcoma is spreading or coming back. Don't hesitate to talk to them about any concerns you may have.

What questions should I ask my doctor?

Rhabdomyosarcoma is a rare disease. You may not know much about it. Whether you have this disease or your child does, you may have many questions about what to expect in the future. Here are some questions to ask at such times:

• What type of rhabdomyosarcoma do I/my child have?
• What is the risk group classification?
• What treatments do you recommend?
• What are the side effects of the treatment?
• Are there any clinical trials we can participate in?
• What is the prognosis for my child's illness?
• What support services do you have that can help us?

Finally, what to remember

Rhabdomyosarcoma is a very rare type of cancer . Experts still don't know exactly why it happens. If you or your child has rhabdomyosarcoma, you may be frustrated that you don't know exactly why it happened. Your medical team understands that. While they can't explain why you or your child has rhabdomyosarcoma, they can explain things like the diagnosis, possible treatments, and the ability to participate in clinical trials. They can also help you find resources like support groups and specialized care. Don't worry, you're not alone. Rhabdomyosarcoma, cancer, childhood cancer, soft tissue cancer, cancer symptoms, cancer treatments, genetic diseases