Understanding Sarcoma Cancer
- Kimberley Nix, a resident doctor in Canada was diagnosed at age 28 with undifferentiated pleomorphic sarcoma, a high-grade soft tissue sarcoma affecting the body’s connective tissues, after noticing a rapidly-growing lump in her leg. Now she’s sharing her story to help others be better self-advocates and inspire them to live life to the fullest.
- The word sarcoma refers to a large array of bone and soft tissue cancers. Those are then further broken down into more specific forms of the disease; there are more than 50 types of soft tissue sarcomas.
- According to Moffitt Cancer Center, undifferentiated pleomorphic sarcoma, a high-grade soft tissue sarcoma which was referred to as malignant fibrous histiocytoma in the past is “a subtype of sarcoma, a cancer affecting the body’s connective tissues (e.g., bones, cartilage, muscles, tendons, ligaments, fat, skin, nerves and blood vessels).”
- “Different sarcoma subtypes affect different areas of the body, and undifferentiated pleomorphic sarcoma typically develops in the soft tissues of the arms, legs and area behind the abdominal organs (the retroperitoneum),” the center explains.
- Being your own healthcare advocate can be key in getting to a correct diagnosis and obtaining the best treatment possible.
It’s been three years since Nix’s cancer diagnosis, which doctors first informed her was extra-skeletal osteosarcoma, and despite her cancer being stage 4, metastatic, the resident MD is living life to the fullest and spreading sarcoma awareness.
Read More@cancerpatientmd Replying to @Sarah #sarcoma #md #resident #sarcomaawareness #sarcomacancer #palliative
She told People, “When I was first diagnosed, I was also studying for my specialty licensing exam (which I fortunately passed!) and working full time as a resident.
“I was disappointed about the news, but between frequently meeting with friends to study, my supportive family (including my now husband), and working with a licensed cancer counselor, I kept my spirits high, which helped me immensely with the sarcoma cancer journey.”
Nix revealed how she was first informed she had extra-skeletal osteosarcoma, only to later discover she actually had undifferentiated pleomorphic sarcoma, something that’s normal. She explained, “having an evolving diagnosis is common in sarcoma because there are over 100 subtypes.”
She continued, “Symptoms of sarcoma are so important because there is no screening test. My symptom was the most common symptom in soft tissue sarcoma. [Everything was] completely normal — including all my lab values — except for a small, but rapidly growing lump in my left leg.
“Mine changed rapidly, which led me to see my doctor right away. It went from the size of a pea to the size of a golf ball in just over a week.”
Nix revealed on her TikTok page that she had surgery soon after her diagnosis and was cancer-free for six months. However, after stopping chemo, nodules developed in her lung, meaning her cancer was metastatic and spread. Resulting in her cancer being incurable and her having to receive palliative treatments.
@cancerpatientmd As a #stage4 #sarcoma #cancerpatient on #palliative treatments, I have no regrets about my training – but understand now more than ever how precious each moment with our loved ones is. #chronicillness #chemotherapy #md #medtok
Nix, who now takes a targeted chemo pill daily and is continuing to study at the Cumming School of Medicine, University of Calgary, has since been sharing her cancer journey on Instagram and TikTok.
In fact, during a recent Instagram post, Nix about one of the biggest things she’s learned throughout her cancer journey, writing alongside a selfie of herself, “One of the biggest lessons I’ve learned as a #sarcoma cancer patient (and medical resident), has been the importance of self-advocacy as a patient. Most recently, with help from a friend, I was able to access medicine I wouldn’t otherwise have been able to have. During other times, I prevented myself from bleeding out of a broken IV I was told wasn’t damaged despite knowing I heard it pop when the phlebotomist tripped on it.
“I’ve also called to see if my team was happy with long wait times on scans, followed up on results, discussed new symptoms, asked for referrals and second opinions. #patientadvocacy is key to filling gaps in care that aren’t the fault of any one healthcare team member.”
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Earlier this year, she captioned another post, “3 years. 3 years as a #sarcoma cancer patient. My illness may be incurable, and terminal without a new trial presenting, but I am grateful for time.
“Grateful for community. Grateful for family and friends. Grateful for pet snuggles. Grateful for my care teams, grateful for life.”
View this post on Instagram
Understanding Undifferentiated Pleomorphic Sarcoma
According to Moffitt Cancer Center, undifferentiated pleomorphic sarcoma, a high-grade soft tissue sarcoma which was referred to as malignant fibrous histiocytoma in the past is “a subtype of sarcoma, a cancer affecting the body’s connective tissues (e.g., bones, cartilage, muscles, tendons, ligaments, fat, skin, nerves and blood vessels).”
“Different sarcoma subtypes affect different areas of the body, and undifferentiated pleomorphic sarcoma typically develops in the soft tissues of the arms, legs and area behind the abdominal organs (the retroperitoneum),” the center explains.
It’s currently unknown what causes this type of cancer, however, research is being done to figure this out Additionally, studies suggest “people over the age of 50 and those who previously received radiation therapy near the area in question” seem to have an increased of developing undifferentiated pleomorphic sarcoma.
Moffitt Cancer Center says possible symptoms could be:
- Swelling
- A lump that increases in size
- Pain
- Numbness
- Tingling
- Fever
- Unintended weight loss
“Other symptoms will depend on where the cancer is located within the body. For example, if the malignancy develops within the abdomen, someone may experience reduced appetite and constipation. Undifferentiated pleomorphic sarcoma is generally considered to be an aggressive type of cancer, and it’s fairly common for it to spread (metastasize) to other areas of the body, including the lungs and lymph nodes,” the center says.
Treatment for this type of sarcoma does vary from patient to patient, as it depends on where the cancer is located and it’s size. It’s also important to note that this type of sarcoma often returns following the completion of treatment, so staying on top of symptoms of follow-up appointments is needed.
Treatment may include one or more of the following:
- Chemotherapy
- Immunotherapy
- Radiation therapy
- Surgery to remove the cancerous cells
- Targeted drug therapy
All About Sarcoma Cancer
Sarcomas are cancers that arise from the cells that hold the body together. They can occur in muscles, nerves, bones, fat, tendons, cartilage or other forms of connective tissues.
“There are hundreds of different kinds of sarcomas, which come from different kinds of cells,” Dr. George Demetri, director of the Sarcoma and Bone Oncology Center at Dana-Farber Cancer Institute and Harvard Medical School, told SurvivorNet in an earlier interview.
The word sarcoma refers to a large array of bone and soft tissue cancers; those are then further broken down into more specific forms of the disease, however, we will not list them all as there are more than 50 types of soft tissue sarcomas.
“Sarcomas are rare and the cause in most patients is unknown,” Dr. Vishal Gupta, site director of Radiation Oncology at The Blavatnik Family Chelsea Medical Center at Mount Sinai, previously toldSurvivorNet.
The word sarcoma refers to a large array of bone and soft tissue cancers, and individual cancers within that set go by unique names. For instance, other types of sarcomas include:
- Ewing’s sarcoma is 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.
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- Kaposi sarcoma is 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 HIV.
- Epithelioid sarcoma is 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 called malignant synovioma, is a cancer that can form soft tissues such as muscle or ligaments, commonly close to joints or in areas like the arm, leg, or foot.
- Osteogenic sarcoma, also called osteosarcoma, starts in the bone, often as it is forming as a young person grows.
- Spindle cell sarcoma is very rare, 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.
Sarcoma Symptoms
The typical symptom of sarcomas is a slow-growing, painless mass. But sarcoma can be hard to detect through symptoms. “Unfortunately, most sarcomas do not cause many of the symptoms that may be associated with other cancer,” Dr. Dale Shepard, director of the Cleveland Clinic Taussig Cancer Institute Phase I and Sarcoma Programs, told SurvivorNet in an earlier interview.
Shepard explains that this often leads to large tumors at the time of diagnosis. “Soft tissue sarcomas are typically painless,” he says.
“Bone sarcomas may be mistaken for orthopedic injuries. 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.”
Sarcoma Survivor Kara Ladd found solace in Reiki, Meditation, and Energy Healing During Treatment
Carcinoma Vs. Sarcoma Explained
Dr. Gupta explains to SurvivorNet that the main difference between a sarcoma and a carcinoma is where they originate. “”A sarcoma typically occurs in soft/connective tissues of the body such as fat, muscle, blood vessels, bones, and nerves whereas a carcinoma typically occurs in organs such as the lung, prostate and breast.”
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Or as Dr. Shepard puts it, a carcinoma comes from the cells that line organs (think lung, colon, or prostate), while a sarcoma comes from the cells that otherwise make up the organ: “Sarcomas are tumors in what people are made from after the organs are removed.”
Sarcomas may be treated by surgery, radiation therapy, and chemotherapy. Many patients benefit from treatment with more than one of these methods, Dr. Shepard explains.
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“More than other types of cancer, the benefits of multidisciplinary care should prompt most patients to be seen by a group that specializes in treating sarcoma.” Dr. Shepard says.
“Even if only for a second opinion or to develop a treatment plan, multidisciplinary care is crucial. As examples, patients may benefit from surgical resection or radiation therapy even with metastatic disease. Patients may benefit from the addition of chemotherapy to radiation therapy prior to surgery to resect a sarcoma.”
The Importance of Advocating For Your Health
Kimberly Nix’s 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.
“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.
Be Pushy, Be Your Own Advocate, Don’t Settle
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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Contributing: SurvivorNet Staff
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