Published Aug 29, 2024

941 Days For Man, 20, To Be Diagnosed With Rare and Aggressive Tumor After Doctors Dismissed Constant Leg Pain As Sciatica For Years

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Understanding Sarcoma Cancer

Jack Spencer, now 26, was diagnosed with a rare and aggressive synovial sarcoma tumor at age 20, nearly three years after he started experiencing a persistent pain in his leg. Now he’s urging others to push for a correct diagnosis, as he went 941 days with pain dismissed as something other than sarcoma.
Synovial sarcoma is a type of sarcoma accounts for five percent to 10 percent of soft-tissue tumors. (For every one million people, one to two are diagnosed with synovial sarcoma every year in the United States.)
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.
When it comes to your health, be a little pushy. You know your body better than anyone else. When you see a doctor for a problem, don’t hesitate to make sure that your question is fully answered and that you are comfortable with the plan moving forward.
From a doctor’s perspective, every problem should have a diagnosis, a treatment, a plan for follow-up, and a plan for what happens next if the treatment doesn’t work.

Jack Spencer, from Kent, England, was diagnosed with a rare and aggressive synovial sarcoma tumor at age 20, nearly three years after he started experiencing a persistent pain in his leg—something doctors dismissed as sciatica [pain that radiates along the sciatic nerve, which moves down the leg[s] from the lower back.

Now, 26, Spencer is hoping to “empower” others to push for answers when it comes to your health as he was only 17 years old when he developed a constant pain in his leg. When he was finally diagnosed, the cancer had already metastasized [spread] to his lungs.

Speaking to BBC in a recent interview, Spencer, who is has since been declared “cancer-free,” said, “It took 941 days for me to be correctly diagnosed and I think of myself as very lucky to have survived.”

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Spencer, who suspected his pain was more than just his sciatic during an incident where he fell on his driveway, explained, “”It’s infuriating to think that for so long I was told it was something that it wasn’t.”

He questioned, “What 19-year-old collapses on a driveway in pain, from orthopedic issues?”

Sarcoma U.K., which also shared Spencer’s story, explained that his health struggle began in 2015 when pain in his hip arose, adding, “In January 2016, he visited his GP, who suggested it might be sciatica. The next two years Jake struggled with lots of pain to the point where in 2017 he collapsed in agony on his driveway.”

The national charity explains further, “Despite the increasing pain, Jake was again told by [emergency room] that it was sciatica. He attended physiotherapy in June 2017, where he was asked if he was focusing on the pain. It wasn’t until October 2017, after an X-ray and MRI, that he was told he had an adventitial bursa. An adventitial bursa is a small, fluid-filled sac that forms abnormally on the outer layer (adventitia) of certain structures, typically blood vessels or tendons.

“Jake underwent shockwave therapy in January 2018, and in July 2018, where a radiologist attempted to aspirate the ‘bursa,’ which was unsuccessful. Eventually, he was referred to RNOH for a biopsy, which confirmed synovial sarcoma. The tumor was around the size of a snooker [poker] ball.”

Following a successful course of radiotherapy and surgery, the cancer recurrence was found in his lung in February 2020. But after undergoing chemotherapy and surgery from March 2020 to August 2020, he has since been deemed “all-clear” and cancer-free.

Overall, Spencer recounts treatment being “painful, “exhausting,” and causing him to feel sleepy most of the time.

“It was a really hard experience, particularly through Covid,” he told BBC.

Although, Spencer felt “pure joy” to have beaten cancer, he is still “absolutely infuriated” that his cancer discovered later on.

He explained, “I’m really grateful that I got the right diagnosis in the end but I don’t think it’s something that should be fought so hard for. In the worst circumstance I could have lost my whole leg, in an even worse circumstance I wouldn’t be here.

“And the fact that that was mostly due to someone misinterpreting a scan makes me really angry.”

Spencer concluded, “People should just keep pushing for their diagnosis. If you’ve got a lump, or pain, or something suspicious then just keep pushing your GP or seek a second opinion.

“I am so grateful to so many healthcare professionals that made me well and that my cancer did actually respond to treatment.”

Understanding Synovial Sarcoma

According to the National Cancer Institute, synovial sarcoma is described as a cancer that can come from different types of soft tissue, such as muscle or ligaments.

The institute explains, “It is often found in the arm, leg, or foot, and near joints such as the wrist or ankle. It can also form in soft tissues in the lung or abdomen. Synovial sarcoma may also be called malignant synovioma.

“One third of patients with synovial sarcoma will be diagnosed under the age of 30. It is somewhat more common in males.”

Synovial sarcoma symptoms often depend on where the tumor develops and it’s often first noticed as a painless lump. If the growth is located near a near, it may cause numbness or pain as it gets bigger.

When it comes to diagnosing this type of cancer, doctors will often use scans like an X-ray, ultrasound, CT scan, and MRI to take photos of the tumor. Your doctor will also perform a biopsy and take samples of the tumor to further diagnose what type of tumor it is.

This type of sarcoma accounts for five percent to 10 percent of soft-tissue tumors. (For every one million people, one to two are diagnosed with synovial sarcoma every year in the United States.)

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.

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.”

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.

Sarcoma Survivor Kara Ladd found solace in Reiki, Meditation, and Energy Healing During Treatment

“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 & Getting a Second Opinion

Jack Spencer’s showcases the utmost importance of being your own healthcare advocate. And, sadly, it isn’t unheard of teens having their health concerns not taken seriously prior to a cancer diagnosis.

Additionally, after receiving a cancer diagnosis, it’s important to remember that you can and should talk to other cancer specialists about your disease.

“If I had any advice for you following a cancer diagnosis, it would be, first, to seek out multiple opinions as to the best care,” National Cancer Institute Chief of Surgery Steven Rosenberg told SurvivorNet in a previous interview. “Because finding a doctor up to the latest information is important.”

As we highlight in several areas of SurvivorNet, highly respected doctors sometimes disagree on the right course of treatment, and advances in genetics and immunotherapy are creating new options.

Also, in some instances, the specific course of treatment is not clear-cut. That’s even more why understanding your disease’s potential approaches is crucial.

At the National Cancer Institute, a patient referral service will “guide patients to the right group depending on their disease state so that they can gain access to these new experimental treatments,” Rosenberg says.

Cancer Research Legend Urges Patients to Get Multiple Opinions

Furthermore, getting another opinion may also help you avoid doctor biases. For example, some surgeons own radiation treatment centers. “So there may be a conflict of interest if you present to a surgeon recommending radiation because there is some ownership of that type of facility,” Dr. Jim Hu, director of robotic surgery at Weill Cornell Medical Center, tells SurvivorNet.

Other reasons to get a second opinion include:

To see a doctor who has more experience treating your type of cancer
You have a rare type of cancer
There are several ways to treat your cancer
You feel like your doctor isn’t listening to you or isn’t giving you sound advice
You have trouble understanding your doctor
You don’t like the treatment your doctor recommends or are worried about its possible side effects.
Your insurance company wants you to get another medical opinion
Your cancer isn’t improving on your current treatment

Be Pushy, Be Your Advocate, Says Leading Expert

The bottom line is that being proactive about your health could be life or death. Learn as much as possible from as many experts as possible so you know you did your best to take control of your health.

How Common Are Misdiagnoses?

Jake Spencer’s story reminds us of a shocking study about how frequently patients are misdiagnosed. According to the study, published in BMJ, an estimated 371,00 people in the U.S. die every year due to a misdiagnosis and around 424,000 people are permanently disabled. The study said an estimated 800,000 Americans in total suffer “serious harm” due to misdiagnosis every year.

The researchers for this particular study focused on “serious harm,” but also noted that less detrimental misdiagnoses were likely occurring on an even grander scale. According to STAT, authors believe the number of diagnostic errors that happen in the U.S. each year could be between 50 and 100 million.

Despite these shocking numbers, most misdiagnoses do not have dire consequences.

David Newman-Toker, the lead author of the paper, told the outlet, “The risk level just walking through the door in the doctor’s office that something horrible is going to happen to you because of a diagnostic error is actually quite low.”