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The exact cause of Ewing sarcoma is not fully understood. Researchers have not been able to pinpoint risk factors or prevention measures for Ewing sarcoma. However, researchers have discovered chromosomal changes in a cell's DNA that can lead to the formation of Ewing sarcoma. These changes are not inherited. They develop in children for no apparent reason after they are born.

In most cases, the changes involve the fusing of genetic material between chromosomes 11 and 22. When a certain piece of chromosome 11 is placed next to the EWS gene on chromosome 22, the EWS gene gets "switched on." This activation leads to an overgrowth of the cells and eventually the development of cancer. Less often, there is an exchange of DNA between chromosome 22 and another chromosome that leads to the EWS gene being turned on. The exact mechanism remains unclear, but this important discovery has led to improvements in diagnosing Ewing sarcoma.

Patients with Ewing sarcoma may experience symptoms differently. The most common symptoms include the following:

The symptoms of Ewing sarcoma may resemble other medical conditions or problems. Always consult your doctor for a diagnosis.

In addition to a complete medical history and physical examination, diagnostic tests help confirm the presence of a tumor and also provide details about the tumor that can help oncologists determine the best approach to treatment. Diagnostic tests for Ewing sarcoma may include the following:

Ewing sarcoma is difficult to distinguish from other similar tumors. Diagnosis is often made by excluding all other common solid tumors and using genetic studies.

The cancer care team develops specific treatment plans based on the following:

Depending on the stage of the tumor, treatment may include the following:

Since Ewing sarcoma is rare in adults, the treatment details described in the following sections typically apply to children. Treating Ewing sarcoma in adults may involve modifications, particularly with chemotherapy, as children are much more tolerant of chemotherapy drugs.

Primitive neuroectodermal tumors (PNET) are very rare, molecularly-related tumors that often arise outside of the bone and are treated the same as Ewing sarcoma.

Before treatment can begin, most patients will need to have their tumor staged. Typically, staging an Ewing tumor involves the following:

After the cancer stage is determined, patient care is taken over by a pediatric oncology team that will administer chemotherapy. All Ewing sarcoma patients require chemotherapy as the initial phase of therapy to shrink the primary or main tumor. Even if other aspects of treatment differ—like how the tumor is removed or treated locally—chemotherapy is always the first step. This is because doctors approach Ewing sarcoma as both a local and systemic disease. Chemotherapy is used to treat any potential metastasis (spread) to the lungs, which is quite common but very treatable. A multimodality approach is used even when the disease only appears to be localized at diagnosis.

The first set of chemotherapy drugs for Ewing sarcoma often includes vincristine, doxorubicin (Adriamycin) and cyclophosphamide (VAC). Following recovery from the first set of drugs, ifosfamide and etoposide (IE) may be given.

Like most other childhood cancers, the Children’s Oncology Group determines treatment protocols for Ewing sarcoma. Most cancer centers follow established protocols.

Following initial chemotherapy to shrink the tumor, patients receive another MRI and CT scan of the chest to restage the tumor.

If the tumor is operable, the patient will usually have a resection (surgery). Generally, if cancer can be removed, surgery is recommended as an alternative to radiation, which can cause profound side effects, especially in young children.

If the tumor is inoperable, radiation may be required. Surgery may be discouraged in the following scenarios:

Sometimes both surgery and radiation are required. After tumor resection, the pathologist will analyze the tumor and look for a negative margin on the resected tissue. A negative margin indicates that the portion of tissue around the tumor does not have any live cancer cells. If any live cells are found, radiation is required as a follow-up treatment. Ewing tumors are typically very responsive to radiation.

Another round of chemotherapy is given following surgery or radiation therapy to destroy tumor cells that may have spread to other parts of the body.

Researchers are working to find new and improved ways to treat all kinds of cancers, including Ewing sarcoma. While some progress has been made, targeted treatments such as immunotherapy are considered experimental for patients with Ewing sarcoma. Doctors may pursue potential alternatives for patients with recurrent or advanced Ewing sarcoma who have already exhausted traditional treatment options.

Genomic sequencing may be used to find a drug that’s already FDA-approved for tumors with certain biomarkers (characteristics that may indicate that a tumor is a good target for a certain kind of therapy). Even drugs that haven’t previously been used to treat Ewing sarcoma may be considered.

Clinical trials may also be available. Your doctor can provide information about open studies at your cancer center or other centers across the country.

Ewing sarcoma patients will be monitored with X-rays of the original tumor every three to six months for three to five years. Similarly, patients will have regular CT scans of the lungs and periodic bone scans to detect recurrence as early as possible.

For the rest of their lives, patients will have yearly X-rays of the area of the original tumor to monitor any reconstructive devices and healing of the limb. Exercises may be suggested to increase the function of the affected limb.

According to the American Cancer Society, the overall five-year survival rate for localized Ewing sarcoma is 70 percent. Patients with metastatic disease have a five-year survival rate of 15 percent to 30 percent.

It is unclear whether adults with Ewing sarcoma do as well as children with the condition. Some studies have suggested they do not. However, these studies have been criticized because they used lower doses of chemotherapy than those used in children. Other studies have suggested that when treated aggressively, adults can do just as well as children. The challenge with aggressive treatment is that adult bodies cannot withstand the same dosages of chemotherapy drugs that children can.

As with any cancer, prognosis and long-term survival can vary greatly from person to person. Since every individual is unique, your treatment and prognosis will be based on your unique health condition and needs. The individual patient prognosis for Ewing sarcoma greatly depends on the following:

Compared with smaller tumors, larger tumors are more difficult to remove and have had more opportunity to develop into micrometastatic disease. Micrometastasis describes cancer that has spread to other parts of the body as tumors that are too small to be detected.

Prompt medical attention and aggressive therapy help ensure the best possible prognosis. Continuous follow-up care is also essential.

A person who was treated for Ewing sarcoma as a child or adolescent may develop health effects, which are called late effects, months or years after treatment ends. The type of late effects a survivor develops depends on the location of the tumor and the treatment method.

Late effects can include heart and lung problems, emotional and learning difficulties, growth issues and second malignancies associated with chemotherapy or radiation. For example, children treated for Ewing sarcoma have a higher risk than the average population of developing solid tumors or leukemia later in life.

Some treatments may later affect fertility. If this side effect is permanent, it will cause infertility (the inability to have children). Both men and women can be affected by fertility issues.

If Ewing sarcoma recurs, it usually happens within a few years of treatment. About 30 percent of patients will have a recurrence within the first five years.

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