Sarcoma is a rare cancer that affects the body’s connective tissues, including bones, muscles, fat, nerves, blood vessels, and cartilage. Referred to as “the forgotten cancer,” the American Cancer Society estimates that in 2025, more than 13,000 new soft tissue sarcomas will be diagnosed, and about 5,400 people will die from it. In observance of Sarcoma Awareness Month in July, we asked Ryon Nakasone, M.D., a private practice physician at Hawaii Oncology who also works with The Queen’s Health Systems specializing in medical oncology and hematology, some questions to learn about this rare cancer.
Q&A with Ryon Nakasone, M.D.
What’s sarcoma?
Sarcoma is the general term for a group of rare cancers that can start in the bones or connective tissues, which connect and support other structures or organs. Examples of connective tissues are blood vessels, muscles, nerves, and even fat. The specific sarcoma name depends on where it starts. For example, if it starts in fatty tissue, it can be referred to as a “liposarcoma”; if it starts in the bones, it can be called an “osteosarcoma.”
Why is it called “the forgotten cancer”?
It’s called the ”forgotten cancer” because it’s rare. So, it’s not usually the first diagnosis a doctor considers when seeing a patient for a particular issue.
As an example of how rare it can be, the American Cancer Society projects that there will be about 13,250 new cases of sarcoma in the U.S. this year, compared to 313,780 new cases of prostate cancer.
On top of that, there are more than 40 different subtypes of sarcoma, which can be challenging to detect and diagnose.
What are some symptoms of sarcoma?
The answer is complex. Because we have connective tissues throughout our body, a sarcoma can arise anywhere, and the symptom would be related to the location in which it arises and the surrounding structures it involves. For example, if a sarcoma is growing in the abdomen and begins pressing on a nerve, it could trigger pain in that area.
About 50% of sarcomas start in the extremities, and many patients may notice a lump growing over time. Pain may be associated with the lump, or there may be no pain.
What are the risk factors for developing sarcoma?
Some sarcomas can be linked to inherited cancer syndromes, meaning that they’re genetic-based, and so they were passed down from a parent. Examples would be if a person has the gene for rare disorders like Li-Fraumeni syndrome (caused by mutations in a gene that acts as a tumor suppressor) or Werner syndrome (a condition that causes premature aging). Then, they would be at increased risk of developing sarcoma.
Another risk factor is if a patient had radiation therapy for a different type of cancer. There could be a chance of developing a sarcoma in the radiated area years after the completion of the radiation. This isn’t common but can occur.
Unfortunately, the majority of sarcomas develop in patients with no known risk factors. This is why there are no good preventive strategies.
How is sarcoma diagnosed?
A patient will often begin experiencing a symptom and see their doctor, who will do an exam and talk to the patient about their history regarding the symptom. This may lead to some form of imaging, whether it’s X-rays, computed tomography (CT) scans, ultrasound, or magnetic resonance imaging (MRI), depending on the location of the symptom and what the doctor is looking for.
In many cases, the patient may need a biopsy, which is a procedure where a piece of tissue from the mass is obtained and sent for testing to determine if it’s cancerous or not.
How is sarcoma treated?
Generally, treatment can involve surgery, chemotherapy, or radiation. However, the specific treatment will depend on a variety of factors, including the type of sarcoma, the location, the size, whether or not it has spread, etc. The treatment could consist of one treatment option or sometimes a combination of treatments, like surgery followed by radiation.
What should people know during Sarcoma Awareness Month?
Since there aren’t any preventive strategies, raising awareness of what a sarcoma is and educating people about what to look out for is a great place to start.
It also helps when people are aware of their bodies and can identify new or worrisome symptoms that their doctor should evaluate. Don’t ignore any new lumps or growths. Be sure to have them checked out.
Also, if their family has a history of cancers (including sarcomas), they should talk to their doctor about whether or not genetic testing is right for them.
Raise awareness
You don’t have to wait for a specific day, week, or month to learn about various health conditions! You can check out these articles:
- anxiety awareness month
- celiac disease awareness month
- children’s health month
- irritable bowel syndrome awareness month
- men’s health week
- menopause awareness month
- national suicide prevention month part I and part II
- neonatal intensive care unit (nicu) awareness month
- post-traumatic stress disorder awareness month
- preeclampsia awareness month
- thyroid awareness month
- women’s health week
