Advocating for Your Health
- 19-Year-old Georgia Williams dealt with crippling knee pain for months before she finally received her bone cancer diagnosis.
- Williams has osteogenic sarcoma, also called osteosarcoma, the most common type of cancer that starts in the bones.
- Being your own healthcare advocate can be key in getting to a correct diagnosis and obtaining the best treatment possible.
- Sadly, we’ve heard many women talk about being dismissed by doctors, in particular. One cancer survivor told SurvivorNet she recommends asking many questions, so doctors “earn that copay.” And one of our cancer experts says everyone should educate themselves and be their own health care advocate.
Georgia first went to the doctor for her knee pain in September. But her mother, Janine, says she was ultimately turned away.Read More
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After pushing for a scan, Georgia was told she had a torn ligament and a fractured knee cap. But a subsequent look back on the same scan revealed something strange. The doctors sent Georgia’s scan to a specialist, but Georgia and Janine said they were not told that happened.
Instead, Georgia found out she might have cancer two weeks later after receiving a text message saying her scan was sent to the hospital’s bone sarcoma department. She later received an email about bone cancer that told her to make an appointment.
Janine assumed the news was a mistake given the poor communication, but her fears were confirmed after another trip to the hospital: Georgia had a type of bone cancer called osteosarcoma.
“A little bit of communication with us wouldn’t have hurt,” Janine said. “She is 19, that’s terrifying.”
Today, Georgia awaits results to see how far her cancer has progressed while looking ahead to the chemotherapy, radiotherapy and surgery treatments she’ll have over the next two years.
To read more about Georgia’s story and donate to help her with finances, check out the GoFundMe page created on her behalf by a friend.
What Are Sarcomas?
Generally speaking, the term sarcoma describes more than 70 rare cancers that begin in the bones and the soft tissues, such as muscles. This diverse group of diseases only makes up about 1% of tumors in adults and just over 10% of tumors in children.
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A slow-growing, painless mass is usually the main symptom of sarcomas, but symptoms can be hard to detect as soft tissue sarcomas are typically painless and bone sarcomas are sometimes mistakenly diagnosed as orthopedic injuries.
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“Unfortunately, most sarcomas do not cause many of the symptoms that may be associated with other cancers,” Dr. Dale Shepard, director of the Cleveland Clinic Taussig Cancer Institute Phase I and Sarcoma Programs, told SurvivorNet in a previous discussion. “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.”
Types of Sarcoma Cancers
As mentioned before, there are many different types of sarcomas. Sarcoma types include:
- Ewing’s sarcoma: 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.
- Kaposi sarcoma: 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 the immune system disease HIV.
- Epithelioid sarcoma: 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 known as malignant synovioma: a cancer that can form in the soft tissues such as muscle or ligaments, commonly close to joints or in areas like the arm, leg, or foot.
- Osteogenic sarcoma, also known as osteosarcoma: the most common type of cancer that starts in the bones. This is the type of cancer 19-year-old Williams has.
- Spindle cell sarcoma: a very rare disease, 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.
The importance of Advocating For Your Health
Georgia Williams’ story showcases the utmost importance of being your own healthcare advocate. And, sadly, we’ve heard many women, in particular, talk about how their health concerns were not taken seriously prior to a cancer diagnosis.
April Knowles, for example, previously talked with SurvivorNet about how she became a breast cancer advocate after her doctor dismissed the lump in her breast as a side effect of her menstrual period. Sadly, the dismissal was a mistake, and Knowles was diagnosed with metastatic breast cancer at 39. She says the experience taught her the importance of listening to her body and speaking up when something doesn’t feel right.
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“I wanted my doctor to like me,” she said. “I think women, especially young women, are really used to being dismissed by their doctors.”
Jenny Saldana is another woman who promotes self advocacy. She says she was told, “you can’t keep coming back here taking up resources for women that really need them” when she was trying to get her breast cancer diagnosis.
“The squeaky wheel gets the oil,” she offered as advice to others.
Advocating For Yourself While Navigating the Medical World
Evelyn Reyes-Beato shared a similar sentiment. As a Latina – like Saldana – and a colon cancer survivor, she urges people to “get knowledge” so they won’t feel intimated by their doctors. She wants to remind others that they have a right to ask questions and make physicians “earn that copay.”
Dr. Zuri Murrell previously told SurvivorNet that healthcare guidelines are designed to do the right thing for the largest number of people while using the fewest resources.
“The truth is you have to be in tune with your body, and you realize that you are not the statistic,” the director of the Cedars-Sinai Colorectal Cancer Center said.
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Not every patient will “fit into” the mold, according to Dr. Murrell, so it’s important to “educate yourself and be your own health care advocate.”
“Every appointment you leave as a patient, there should be a plan for what the doc is going to do for you, and if that doesn’t work, what the next plan is,” Dr. Murrell said. “And I think that that’s totally fair. And me as a health professional – that’s what I do for all of my patients.”
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