Be aware of the rare cancer called sarcoma

Jul 12, 2021 | Jennifer O'Hara | @jenohara | Comments (6)

A sarcoma is a rare form of cancer that begins in the bones and in the softer connective tissues in the body. Sarcomas that begin in the bones are called "bone cancer," and sarcomas that forms in the tissues, including muscle, fat, blood vessels, nerves, tendons, and the lining of joints, are called "soft tissue sarcoma."

"These are rare cancers, and in adults, sarcomas comprise less than 1% of new cancers diagnosed every year," says Dr. Brittany Siontis, a Mayo Clinic medical oncologist. "So most people never hear about sarcoma. And that's why we're grateful to have Sarcoma Awareness Month, to try and bring more education to the population about this rare tumor."

Because this form of cancer is rare, it is important to seek care at a center that sees a high volume of sarcoma patients.

"When we're dealing with something that is so rare, it's really important to have a team of folks who are comfortable with these cancers, familiar with how these cancers behave, and know the data to help make the best treatment plan for each patient," says Dr. Siontis.

On the Mayo Clinic Q&A podcast, Dr. Siontis discusses the various forms of sarcoma, treatment options, and research that's underway on new therapies and ways to treat sarcoma.

To practice safe social distancing during the COVID-19 pandemic, this interview was conducted using video conferencing. The sound and video quality are representative of the technology used. For the safety of its patients, staff and visitors, Mayo Clinic has strict masking policies in place. Anyone shown without a mask was recorded prior to COVID-19 or recorded in an area not designated for patient care, where social distancing and other safety protocols were followed.

Read the full transcript.

For more information, go to the Mayo Clinic News Network and mayoclinic.org.

Connect with others talking about sarcoma, and supporting one another in the Cancer support group.

Interested in more newsfeed posts like this? Go to the Podcasts blog.

I am fortunate to have Dr, Siontis as my primary oncologist. Since the 90’s I have been treated at Rochester for my soft tissue sarcoma. There have been numerous surgeries for reoccurrence as well as radiation and cryoablation. Dr. Siontis connect with a trial drug for my cancer with Pfizer. I have been taking it for a year now and it is working. Thank you Mayo and Dr. Siontis. .

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I have had two sarcomas-- an Angiosarcoma, and a Gastro Intestinal Stromal Tumor, both were treated by surgery only. No support or genetic testing was offered, and I have had several other cancers as well. This was in 2011, and I just had surgery for my second Melanoma. With such a high and diverse amount of cancers, one might think I would be a good candidate for research. However, I am beyond that stage now & just sick & tired of cancer and doctors!

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Four-and-a-half years ago I had a spindle-cell sarcoma in my right lung. After a lobectomy, I had no chemo or radiation because my nodes were clear. I go to my oncologist for bloodwork and scans twice a year. Sometimes my left lung has nodes; six months later they’re flat.
My tell that something was wrong was coughing up a small amount of blood that I thought was a result of the huge number of allergens in Tuscany. My doctor (and it took three to diagnose it. Sigh.) disagreed. I get very nervous every six months when I go for my checkup, but my oncologist says to relax now. I am trying.

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As of this week I was diagnosed with a rare sarcoma. NUTM1 rearranged colorectal sarcoma. I had surgery in August to remove the tumor and several lymph nodes. After a PET and MRI, did not show any cancer. I will have scans every two months to check to see if anything shows up. Since it is so rare, from what I have found only 6 cases prior to mine, there isn't a treatment option. I guess at this time, I will just live each day and not worry until there is something to worry about.

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@liz2566

As of this week I was diagnosed with a rare sarcoma. NUTM1 rearranged colorectal sarcoma. I had surgery in August to remove the tumor and several lymph nodes. After a PET and MRI, did not show any cancer. I will have scans every two months to check to see if anything shows up. Since it is so rare, from what I have found only 6 cases prior to mine, there isn't a treatment option. I guess at this time, I will just live each day and not worry until there is something to worry about.

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Hi @liz2566, you may wish to join the discussions about sarcoma here:
- Diagnosed with sarcoma? Let's share
https://connect.mayoclinic.org/discussion/diagnosed-with-sarcoma-lets-share/
How are you doing with recovery from surgery?

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Thanks for the response. I am doing very well from the surgery. Just anxious about the unknown and being diagnosed with a rare cancer is scary.

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