Understanding Rhabdomyosarcoma
- A 25-year-old woman's symptoms were dismissed as mere hemorrhoids because she seemed "young and healthy," but she was battling a rare cancer: rhabdomyosarcoma.
- Altman visited four doctors before she was finally diagnosed with alveolar rhabdomyosarcoma. Her story highlights the importance of advocating for yourself in the medical world.
- This cancer is considered rare because there are only about 400 to 500 new cases diagnosed each year in the United States, according to the American Cancer Society.
Kasey Altman, 25, from San Diego, Calif., says she saw four different doctors before she was finally diagnosed with cancer. She says that she had "these tumors pop up on my body," but three doctors dismissed her because she seemed "young and healthy." Altman finally found relief and a diagnosis with the fourth doctor, highlighting the importance of advocating for yourself in the medical world.
Read More"I was perfectly healthy, exercising daily, eating well," she says. "I'm a former college athlete, so I take my health very seriously."@kaseyaltman This was the most self-aggrandizing couple mins of my life but hopefully info overload means I'll never have to do it again #cancer #rhabdomyosarcoma ♬ original sound – Kasey Altman
"Then I had these tumors pop up on my body, which was close to my anus, and no one would listen to me because I was young, healthy and looked fine."
Kasey's Quest to Find Answers
Altman visited four doctors before she was finally diagnosed with alveolar rhabdomyosarcoma, a rare cancer. This cancer is considered rare because there are only about 400 to 500 new cases diagnosed each year in the United States, according to the American Cancer Society.
"The first doctor I saw didn't give me an exam at all, she just refused to look at it," Altman says of her first doctor visit. "I walked in and said, 'This is what I think is a tumor on my body.' She (the doctor) dismissed me within two minutes and sent me on my way with a suppository which would help a hemorrhoid."
She visited a second doctor, who also dismissed her before her aunt recommended she see an OB-GYN.
"The third doctor I went to was an OB-GYN who looked at it and thought it was really weird," Altman says. "But she also assured me that surely I'm healthy and young and that it couldn't be anything serious."
"I started to get emotional because no one was hearing me," she adds, "and this was the third time it happened in three weeks."
Altman was determined to get answers to what she knew was something wrong with her body, so she pushed back against the doctor and requested a CT scan.
"She (the doctor) was reluctant but did order a CT scan which then led to my diagnosis," she says. "I'm grateful for that but it was still considered an issue to get her to take me seriously."
It was October 2020 when her rhabdomyosarcoma was discovered; she had to reorganize her life around chemotherapy treatment, which lasted 10 months, until September 2021.
"I think the hardest pill to swallow emotionally is that when you're in your 20s, all you do is plan for 30s and 40s and onwards," Altman says. "When you're told you probably don't have much time left, you have to make a pivot."
"For me, that was to try to find my purpose in this world because I had this sense of urgency that didn't exist before,” she says.
However, her cancer returned just weeks after her last round of treatment. The cancer returned as a lymph node in her chest; she faces additional chemotherapy. She is also waiting to hear if she will be able to join a clinical trial to treat her cancer.
"There's a lot of innovative medicine and I have the luxury of having a parent advocate, my mother, who's literally the smartest person in the world," Altman says.
What is Rhabdomyosarcoma?
Rhabdomyosarcoma, also known as RMS, is a rare type of sarcoma (soft tissue cancer) that occurs most commonly in children. According to the ACS, sarcomas are cancers that develop in bones and soft tissues like muscles, fat, the linings of joints or blood vessels.
There are many types of sarcomas, and RMS specifically is made up of cells that normally develop into the muscles we use to move our bodies around. Before they fully develop, the cells that will form these muscles are called rhabdomyoblasts, and they are the cells that can become RMS. Though RMS can occur in adults, it is more common in children because it is connected to these early forms of muscle cells.
When adults, like Altman, develop RMS, they generally have faster growing types of the disease that occur in harder-to-treat parts of the body. Common RMS sites are the head and neck, urinary and reproductive organs, arms and legs, and the chest and abdomen.
There are two main types of RMS: embryonal rhabdomyosarcoma (ERMS) and alveolar rhabdomyosarcoma (ARMS), which Altman has.
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.
The Importance of Advocating for Yourself
"I'm at the point now where I'm advocating for myself now and taking an active role in my treatment," Altman says. "We’re pursuing every option under the sun."
And that is exactly what Altman's story embodies: advocating for yourself.
Advocating for Yourself While Navigating the Medical World
Being your own advocate is always important when it comes to cancer care. And by doing so, you can make sure that your doctor sees you as an individual.
"One of the biggest things that I did from the very beginning was asking the right questions," Alex Echols, a patient advocate and lymphoma survivor, tells SurvivorNet. "It's our lives on the line."
He credits these questions with making sure that doctors took him seriously and viewed him as a partner in his treatment.
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