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A cancer diagnosis is scary and confusing, especially for a patient receiving a sarcoma diagnosis. There are numerous sarcomas that a person can be diagnosed with, from the more common liposarcoma and gastrointestinal stromal tumors to the rarer malignant mesenchymoma. In fact, there are over 50 types of sarcomas to-date and the number continues to grow as the medical community gains more knowledge. With each type of sarcoma, and with each stage of the cancer, there are different treatment options available.
In other words, a sarcoma diagnosis is not a straightforward diagnosis. As such, it is imperative that the person newly diagnosed with a sarcoma be diagnosed properly so that they get the most appropriate treatment necessary. To accomplish that, it is important to receive a second opinion from a sarcoma expert.
That is one of the main goals of the Sarcoma Alliance, a nonprofit patient organization that helps patients get that second opinion by a sarcoma expert.
Getting A Second Opinion
In an exclusive interview with CURE, Alison Olig, executive director of the Sarcoma Alliance noted that once a person is newly diagnosed, “one of the first things we do is tell patients they have to get to a specialist for a second opinion consultation.”
Sarcoma Alliance will help patients get to that specialists. The alliance has a list of Sarcoma Specialty Centers on their website and based on a patients’ location, can assist them in getting an appointment.
To make sure the specialty centers they are referring the patients to are appropriate, Olig noted they only list centers on their website that have met the strict criteria for diagnosing and treating patient with sarcoma.
Getting Financial Support
Traveling to get a second opinion at a specialty center can be expensive. There is a concern that some patients will not seek a second opinion and just simply want to get on with the treatment, but the Sarcoma Alliance believes that having a patient at a specialty center is so vital to the care they will receive that the alliance provides financial assistance to any family that applies, regardless of need.
“It can cover anything from hotel and airfare to a copay, or if it’s out of network, it can help with those expenses,” said Olig. “Really anything that the patient has to pay themselves to get to a specialist we want to help with because we want to make sure that the financial component isn’t a barrier from patients getting proper treatment and advice.”
The travel grants are for second opinion consults only and can be for up to $500.
Getting Peer Support
Because the sarcomas are rare cancers, being diagnosed can feel isolating. The Sarcoma Alliance offers many different aspects of support to sarcoma patients.
“We have a whole platform of support networks so that no matter what a patient or caregiver is comfortable with, we have an option for them,” said Olig.
The alliance has a Facebook support group, a twice-weekly digital chat room, as well as a peer-to-peer program which matches patients one-on-one with someone in similar circumstances.
Getting Educational Support
The Sarcoma Alliance website is filled with information to help patients manage their sarcoma. From treatment guidelines to dietary and lifestyle tips, to links to new clinical trials, the Sarcoma Alliance website provides patients with an array of resources to help them in a practical manner.
All sarcoma patients, whether they are newly diagnosed or not, are encouraged to visit www.sarcomaalliance.org to see how the organization can help.
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