clear cell sarcoma usa patient portal

What is clear cell sarcoma?

The Clear Cell Sarcoma Foundation (formerly Sara’s Cure) is a Charleston, SC based 501(c)(3) with one mission – to make Clear Cell Sarcoma survivable through education and scientific research while ensuring all patients and caregivers impacted have a voice and platform to enact change and strive towards the cure.

Does clear cell sarcoma cause pain?

The Clear Cell Sarcoma Foundation (formerly Sara’s Cure) is a Charleston, SC based 501(c)(3) with one mission – to make Clear Cell Sarcoma survivable through education and scientific research while ensuring all patients and caregivers impacted have a voice and platform to enact change and strive towards the cure.

How is clear cell sarcoma (CCS) diagnosed?

Background: Clear cell sarcoma of the kidney (CCSK) is a rare and aggressive tumor accounting for 5% of pediatric renal tumors with an incidence of 20 patients per year in the USA. It is bone metastasizing with poor prognosis. Our aim was to show characteristics of patients in relation to improved outcome in one of the developing countries.

Does clear cell sarcoma show up on MRI?

Unlike many other types of sarcoma, clear cell sarcoma usually arises as a result of genetic mutation. The exact cause of most sarcomas cannot be pinpointed. Symptoms of Clear Cell Sarcoma. Initially clear cell sarcoma patients present few symptoms or pain. If the tumor is not too deep within the body, it is sometimes presented as a slow-growing lump not unlike a hernia.

How do you know if you have clear cell sarcoma?

Initially clear cell sarcoma patients present few symptoms or pain. If the tumor is not too deep within the body, it is sometimes presented as a slow-growing lump not unlike a hernia.

What happens if you have clear cell sarcoma?

If you believe that your clear cell sarcoma was diagnosed incorrectly or late you might have a medical malpractice claim. You might have a medical malpractice claim if the recommended course of treatment was inadequate or surgery was botched.

How long does it take for a clear cell sarcoma to spread?

The most difficult fact of a clear cell sarcoma diagnosis is that it is prone to relapse and spread long after its initial diagnosis. About two-thirds of patients survive five years after their initial diagnosis, 33 percent after ten years and around ten percent after 20 years.

What age do you get sarcoma?

This type of sarcoma is most often found in adults between the ages of 20 to 40, with no distinct preference for females over males. Sarcomas in general are cancers that appear in connective tissue. Clear cell sarcoma usually grows on tendons in the limbs, especially those in the hands and feet.

Why do surgeons remove margins in sarcoma?

Clear cell sarcoma tends to be quite invasive, so the surgeon removes a margin of normal tissue (this is often referred to as a surgical margin) in order to prevent local recurrence. In addition to surgery, radiation and/or chemotherapy is used as a supplement to prevent local recurrence.

Can you talk to your doctor about clear cell sarcoma?

If you or a loved one has been diagnosed with clear cell sarcoma, you are probably looking for answers to your questions and concerns about the disease. We strongly recommend that you speak with your doctor and other medical professionals about all aspects of the diagnosis. However, you can consider this guide an introduction to clear cell sarcoma ...

Can sarcoma grow in the gastrointestinal tract?

They can also grow in the gastrointestinal tract and throughout the torso. Unlike many other types of sarcoma, clear cell sarcoma usually arises as a result of genetic mutation. The exact cause of most sarcomas cannot be pinpointed.

What is clear cell sarcoma?

Clear cell sarcoma is a translocation-associated sarcoma, which means that a genetic mutation defines the disease. In chromosomal translocations, the pieces of two chromosomes are swapped, which can result in an abnormal fusion of genes. There are two ways to classify clear cell sarcoma tumors: by site or by translocation type.

How to classify clear cell sarcoma?

There are two ways to classify clear cell sarcoma tumors: by site or by translocation type. Types of clear cell sarcoma based on site of origin are: By genetic classification, the most common types are clear cell sarcoma harboring an EWSR1/ATF1 or a EWSR1/CREB1 translocation.

What is the genetic aberration of clear cell sarcoma?

The distinctive genetic aberration most consistently found in clear cell sarcoma is a reciprocal chromosomal translocation of chromosomes 12 and 22 occurring at chromosomal arms q13 and q12, respectively, notated t (12;22) (q13;q12). The translocation produces an in-frame gene fusion of Activating Transcription Factor 1 ( ATF1) and Ewing Sarcoma Breakpoint Region 1 ( EWSR1 ). This chromosomal translocation was first described by cytogenetic karyotyping in the early 1990s by Bridge et al.23,24 Some cases of clear cell sarcoma may harbour cryptic fusions or use alternative partners for EWSR1, such as CREB1, in order to cause similar oncogenic changes. 25,26 In recent years, EWSR1 translocations with either ATF1 or CREB1 have been confirmed in over 90% of analyzed cases using PCR and dual color, break-apart FISH. 16,25,27,28 However, Pierotti et al. claims that a significant number of deep soft tissue cases with no history of melanoma have been misdiagnosed as melanoma based on the absence of a EWSR1 -translocation, when many were actually true clear cell sarcoma. 29 Both EWSR1 -translocation-negative cases and metastatic melanoma cases were consistently found to harbor chromosome 22 amplifications.

What is the most common type of cutaneous clear cell sarcoma?

cutaneous clear cell sarcoma (of the skin) By genetic classification, the most common types are clear cell sarcoma harboring an EWSR1/ATF1 or a EWSR1/CREB1 translocation. Sometimes, tumors have no observed EWSR1 translocation.

What are translocations in sarcomas?

Translocation-associated sarcomas such as clear cell sarcoma, Ewing family tumors, and desmoplastic small round cell tumor possess non-homologous chromosomal translocations, whereby two different chromosomes interchange parts with each other, that appear to be fundamental in the progression of these diseases. In most cases, chromosomal translocations in these tumors generate chimeric master transcription factors by fusing one transcription factor’s DNA-binding domain to a regulatory domain from a different transcription factor, leading to dysregulated expression of the original target genes. Such events are thought to be fundamental oncogenic driver mutations: though these sarcoma cells often carry relatively few genetic mutations, translocations involving master regulator oncogenes simultaneously dysregulate a number of downstream oncogenes leading to cancer progression. This has been best characterized for synovial sarcoma with the invention of the synovial sarcoma mouse model, wherein the conditional expression of the SS18/SSX fusion oncoprotein as the sole human protein expressed in immature mouse myoblasts leads to development of tumors in mice with the same histology, protein and gene expression profile changes characteristic of human synovial sarcomas. 7 Similarly, various human mesenchymal cell lines undergo malignant transformation after expression of the EWSR1/FLI1 fusion oncoprotein consistently found in Ewing family tumors. 8,9

How is a clear cell sarcoma imaged?

Clear cell sarcoma tumors are often imaged by an MRI. An MRI contrasts different types of chemical bonds using magnetism, essentially contrasting tissues with high water content from tissues with high fat content to create a grayscale image.

What is the FDA approved treatment for sarcoma?

Two FDA approved chemotherapies used in the management of soft tissue sarcomas are ifosfamide and doxorubicin. The most promising experimental strategies for treating clear cell sarcoma are targeted therapies, which are designed to target specific features of cancer cells.