Published Aug 18, 2024

Doctors Dismissed Lump On Three-Year-Old Girl’s Toe As a Wart, It Was Rare Soft Tissue Cancer- Prayers & Her Treatment Path

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Understanding Sarcoma Cancer

A five-year-old girl was diagnosed with a rare type of sarcoma called desmoid-type fibromatosis two years after a growth on her foot was dismissed as a wart. Now her mom is working to spread awareness for sarcoma.
The term sarcoma is used to describe more than 70 rare cancers that begin in the bones and the soft tissues, such as muscles.
One of our experts says “most sarcomas do not cause many of the symptoms that may be associated with other cancers.” However, a slow-growing, painless mass is generally the main symptom of sarcomas. She says “it’s important that patients who do have symptoms are not dismissive of them.”
The type of cancer Nansi Alysa was diagnosed with is Desmoid-type fibromatosis, described by the National Cancer Institute (NCI) as a “type of soft tissue tumor that forms in fibrous (connective) tissue, usually in the arms, legs, or abdomen, and it may also occur in the head and neck.”

Nansi Alysa was diagnosed with a rare type of sarcoma called desmoid-type fibromatosis at age five—two years after a lump on her toe was dismissed as a wart and one year after the growth was mistakenly observed as a benign cysts.

Desmoid-type fibromatosis is described by the National Cancer Institute (NCI) as a “type of soft tissue tumor that forms in fibrous (connective) tissue, usually in the arms, legs, or abdomen, and it may also occur in the head and neck.” The institute notes that these type of tumors are usually benign (not cancer) and often return after treatment and spread to nearby tissue. Its rare for these type of tumors to spread elsewhere.

Nansi Alysa (Photo Credit: Leila Evans via BBC)

Now her mom, Leila Evans, from Wales, England, is urging other parents to push for questions and seek answers when it comes to your children’s health.

She told BBC in a recent interview, that her daughter was just three years old when her symptoms first appeared. But Nansi Alysa didn’t receive a correct diagnosis until she was age five.

“The doctors should have listened to me. I’m her mother, and a mother knows best,” her mom, who first was told by a general practitioner in May 2021 that her daughter’s growth was a wart, insisted.

What You Need to Know About Soft Tissue Sarcomas

Evans explained that after the growth increased in size over the next 13 months, she sought the advice of another doctor.

In June 2022, Evans was told her daughter had a benign cyst. However, it wasn’t until July 2023 that Nansi Alysa had surgery to have the lump removed.

After the procedure was done at Alder Hey Children’s Hospital, testing was done on the growth that was removed off of the five-year-old girl.

Six weeks later, the results revealed Nansi Alysa had a rare type of sarcoma. Her upset mother told BBC, “I would have liked it if they had listened to me,” she said. I knew it wasn’t a wart. A mother knows when something is wrong with their children.”

“Before Nansi Alysa was diagnosed I had not heard of the condition. So getting the news a year ago everything was running through my mind: that my daughter has cancer, what is going to happen next, what is the treatment?

“It was a really upsetting time for all the family.”

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Now Evans is working to raise awareness for sarcoma by taking part in a local charity event, raising money for Charity Sarcoma UK.

“If we can help one family or one child we will be happy,” she said.

All About Sarcoma Cancer

Sarcomas are cancers that arise from the cells that hold the body together. They can occur in muscles, nerves, bones, fat, tendons, cartilage or other forms of connective tissues.

“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, told SurvivorNet in an earlier interview.

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.

“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 toldSurvivorNet.

The word sarcoma refers to a large array of bone and soft tissue cancers, and individual cancers within that set go by unique names. For instance, other types of sarcomas include:

Ewing’s sarcoma is a cancer that typically occurs in and around the bones, often in the arms or legs, or the bones of the pelvis. It most commonly occurs in children and young adults.
Desmoid-type fibromatosis is a type of soft tissue tumor that develops in the fibrous (connective) tissue, usually in the arms, legs, or abdomen. Sometimes it can be found in the head and neck.

Kaposi sarcoma is a very rare type of cancer that causes lesions on the skin, in lymph nodes, organs, and the mucous membranes of the mouth, nose, and throat. It typically affects people with compromised immune systems, such as those with HIV.
Epithelioid sarcoma is a type of soft tissue cancer that grows slowly. It is likely to begin under the skin of areas like the finger, hand, forearm, lower part of the leg, or foot.
Synovial sarcoma, also called malignant synovioma, is a cancer that can form soft tissues such as muscle or ligaments, commonly close to joints or in areas like the arm, leg, or foot.
Osteogenic sarcoma, also called osteosarcoma, starts in the bone, often as it is forming as a young person grows.
Spindle cell sarcoma is very rare, comprising as little as 2 percent of all primary bone cancer cases. It can start in the bone, often in the arms, legs, and pelvis, and usually occurs in people over 40.
Angiosarcoma: a rare cancer that develops in the inner lining of blood vessels and lymph vessels. It can occur anywhere in the body but is most often found in the skin, breast, liver and spleen.

Sarcoma Symptoms

The typical symptom of sarcomas is a slow-growing, painless mass. But sarcoma can be hard to detect through symptoms. “Unfortunately, most sarcomas do not cause many of the symptoms that may be associated with other cancer,” Dr. Dale Shepard, director of the Cleveland Clinic Taussig Cancer Institute Phase I and Sarcoma Programs, told SurvivorNet in an earlier interview.

Shepard explains that this often leads to large tumors at the time of diagnosis. “Soft tissue sarcomas are typically painless,” he says.

“Bone sarcomas may be mistaken for orthopedic injuries. A mass the size of a golf ball or larger and growing should be evaluated as a potential sarcoma. It’s important that patients who do have symptoms are not dismissive of them.”

Sarcoma Survivor Kara Ladd found solace in Reiki, Meditation, and Energy Healing During Treatment

Carcinoma Vs. Sarcoma Explained

Dr. Gupta explains to SurvivorNet that the main difference between a sarcoma and a carcinoma is where they originate. “”A sarcoma typically occurs in soft/connective tissues of the body such as fat, muscle, blood vessels, bones, and nerves whereas a carcinoma typically occurs in organs such as the lung, prostate and breast.”

Or as Dr. Shepard puts it, a carcinoma comes from the cells that line organs (think lung, colon, or prostate), while a sarcoma comes from the cells that otherwise make up the organ: “Sarcomas are tumors in what people are made from after the organs are removed.”

Sarcomas may be treated by surgery, radiation therapy, and chemotherapy. Many patients benefit from treatment with more than one of these methods, Dr. Shepard explains.

Sarcoma Survivor Kara Ladd found solace in Reiki, Meditation, and Energy Healing During Treatment

“More than other types of cancer, the benefits of multidisciplinary care should prompt most patients to be seen by a group that specializes in treating sarcoma.” Dr. Shepard says.

“Even if only for a second opinion or to develop a treatment plan, multidisciplinary care is crucial. As examples, patients may benefit from surgical resection or radiation therapy even with metastatic disease. Patients may benefit from the addition of chemotherapy to radiation therapy prior to surgery to resect a sarcoma.”

Leading Experts Urge Patients to Be Proactive

As we highlight in several areas of SurvivorNet, highly respected doctors sometimes disagree on the right course of treatment for an ailment, and advances in medicine are always creating new options. Also, in some instances the specific course of treatment is not clear cut.

That’s even more reason why understanding the potential approaches to your disease is crucial.

Furthermore, getting another opinion may also help you avoid doctor biases. For example, when seeking care for cancer, some surgeons may have an affiliation with a radiation center.

Cancer Research Legend Urges Patients to Get Multiple Opinions

“So there may be a conflict of interest if you present to a surgeon that is recommending radiation because there is some ownership of that type of facility,” Dr. Jim Hu, director of robotic surgery at Weill Cornell Medical Center, previously told SurvivorNet.

Other reasons to get a second opinion include:

To see a doctor who has more experience treating your type of disease
You have a rare disease
There are several ways to treat your illness
You feel like your doctor isn’t listening to you, or isn’t giving you good advice
You have trouble understanding your doctor
You don’t like the treatment your doctor is recommending, or you’re worried about its possible side effects
Your insurance company wants you to get another medical opinion

Bottom line, being proactive about your health could be a matter of life or death. Learn as much as you can from as many experts as you can, so that you know that you did your best to take control of your health.