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7 Tips for Understanding a Soft Tissue Sarcoma Diagnosis

Holding Hands

This is a contributing guest post by Atrium Health's Orthopedic Surgeon, Dr. Joshua Patt, MD, MPH, FAOA who actively serves on the Move For Jenn Foundation Board. Find out more about Dr. Patt.

Cancer Discovery

Discovering cancer early many times allows for more treatment options. Some cancers have symptoms that are noticeable, and others do not. It’s very rare that an MRI of a soft tissue mass will be concerning, and that you’ll be referred to a specialist for treatment and evaluation. However, some sarcomas go unrecognized and are only diagnosed after an unintended excision. While this isn’t the most efficient way of dealing with sarcoma diagnosis, there is evidence that your outcome will be the same if you’re referred to a doctor that can perform an operation.

Soft tissue sarcoma removal requires surgery. Surgery plays a vital role in the treatment of soft tissue sarcoma cancer. It’s important that your doctor is experienced in the treatment of these rare sarcomas since these types of tumors are hard to treat and require expertise.

The following 7 tips are meant to help guide you in understanding your soft tissue sarcoma diagnosis.

  1. What to Look for When Choosing A Doctor

    The most important thing above all is to choose a doctor with appropriate training in sarcoma treatment that you’re comfortable communicating with. Soft tissue sarcomas should be treated either by an Orthopaedic Oncologist or a General Surgeon who is trained in surgical oncology. Orthopaedic oncologists are orthopaedic surgeons who deal primarily with soft tissue sarcomas of the extremities. Finding the right surgeon is much like shopping for a car. It is a big commitment and ultimately the choice has to feel right to you.

  2. Understanding Your Sarcoma Diagnosis

    Due to sarcomas being a rare type of cancer that can be found on different parts of the body, it’s important to take the appropriate steps in determining the nature of the tumor and understanding your sarcoma diagnosis so the best treatment can be chosen. Sarcoma is a type of cancer that develops from the connective tissues which are the tissues that hold us together. Examples of connective tissue include muscles, nerves, bones, fat, tendons and cartilage. Most of the connective tissue in the body is in the extremities (arms and legs) which is why most of these tumors are found in these locations. Soft tissue sarcomas represent approximately 1% of all adult cancers. There are approximately 12,000 diagnosed annually in the United States.

  3. Understanding Grade of Tumor & Stages

    After being diagnosed with soft tissue sarcoma, it’s important to understand the grade of the tumor and the different soft tissue sarcoma stages. There are different staging systems dependent on where the cancer is located in the body. The grade of a tumor is used to determine the stage of the sarcoma and helps with predicting how fast it will spread and grow. Knowing the grade is helpful in determining sarcoma treatment options. Your doctor will order a series of tests that help determine if there is evidence of the tumor anywhere else. With soft tissue sarcomas, this typically consists of an MRI of the mass, with and without contrast dye,  a chest x-ray, as well as a CAT scan of your chest. With a few tumors, sometimes a scan of your abdomen and pelvis will be done. While PET scans can be considered, they are not necessary for staging in sarcomas and should be used in select circumstances. Most tumors can be categorized as high or low grade. Low-grade tumors typically grow slowly and rarely metastasize. High-grade tumors, on the other hand, can grow rapidly and have a much higher chance of spreading. The physicians at Atrium Health are highly specialized in diagnosing and staging various types of sarcoma. 

  4. Your Soft Tissue Sarcoma Treatment Plan

    Everyone’s cancer diagnosis is different, and many doctor’s reference evidence-based recommendations in addition to peer-reviewed medical literature to stay up to date on treatments (such as the National Comprehensive Cancer Network). The National Comprehensive Cancer Network is devoted to patient’s education, research, care and overall improving the quality and effectiveness of cancer care so patients can live a better life. These evidence-based credible resources are used as guidelines that assist the doctor to make the best decisions possible for their patient’s specific circumstances and help aid in the diagnosis, prevention, and the cancer treatment plan.

  5. Why You Should Get a Cancer Second Opinion

    Dependent on the type of cancer and stage, there is typically a period of time before treatment begins which allows time for cancer patients to get a second opinion. Some patients choose to talk with other doctors to see what information and treatment options are provided. Ultimately, the decision of choosing a doctor should be made after you’ve looked at all your treatment options and have decided on which doctor you feel most comfortable with. It's important to have a physician that encourages you to meet with other physicians, is open-minded, and is willing to share your case with others on the team and through tumor boards to give you peace of mind. Not only can getting a second opinion add validity to your decision if all opinions are the same, but it can present other options that you may not have known were available.

  6. Sarcoma Recovery

    Regardless of what your recovery plan looks like, balancing the expectations of how you should feel and how long it takes to return to your regular activities is important in order to keep a positive mindset. Sarcoma is a rare cancer with many different subtypes, and each case is treated differently. Some sarcomas are removed surgically, while others require chemo or radiation either before or after surgery, and some subtypes aren’t responsive to chemo or radiation. It’s important to stay on top of pain medications as directed by your physician to help with pain management and side effects. Many times doctors recommend creating a chart to manage medications and dosages, especially when you have various caretakers. There are also non-opioid options available to help with associated pain that you can ask your doctor about if that’s important to you.

  7. Follow Up Care After Cancer Treatment

    Despite receiving news that you are “NED” (no evidence of disease), it’s important to still follow up with your physician for scans and appointments. Although you may have received surgery and other associated therapies, it’s important to keep in mind that sarcoma can recur in its original location or in distant sites such as your lungs. Early detection of sarcoma is key to survival, regardless of your diagnosis. Choosing a follow-up plan with your physician helps to not only ensure you stay cancer free but if there are any changes in your scans or examinations, you have the option to respond.

Treating Soft Tissue Sarcomas

All in all, it’s important to have an accurate diagnosis of the extent and type of sarcoma prior to treatment. Atrium Health’s Levine Center Institute has a team of nationally renowned physicians that use the latest technology to diagnose and treat soft tissue sarcomas, focusing on removing your tumors. Their dedicated care team has a wide range of support services and can give you the complete care you need to treat your rare cancer. Find out how they can help.

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