'Forrest Gump' actor's son, 33, dies of rare bone cancer: What a Canadian expert says about chordoma

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A rare form of bone cancer called chordoma has taken the life of Gary Sinise's son, the actor shared in a heartfelt tribute earlier this week.

The "Forrest Gump" star shared the news of McCanna Anthony "Mac" Sinise's death both on Instagram and his foundation's website on Tuesday, noting his musician son died at age 33 the same week his album, "Resurrection & Revival," went to press.

"He died on Jan. 5, 2024 at 3:25 p.m., and was laid to rest on Jan. 23," Gary wrote. "Like any family experiencing such a loss, we are heartbroken and have been managing as best we can. As parents, it is so difficult losing a child. My heart goes out to all who have suffered a similar loss, and to anyone who has lost a loved one."

In his tribute, Gary shared his son joined the foundation in February 2017. The following June, his wife Moira was diagnosed with stage three breast cancer and Mac was diagnosed with chordoma a couple months later in August. While Moira went into remission after months of treatment, Mac faced a tough battle Gary said "disabled him more and more as time went on."

Treatment and two surgeries allowed Mac to come into the Gary Sinise Foundation's office for most of 2019, but following a third spine surgery that November and another in January 2020, he had to focus full-time on his cancer battle.

"In sharing our story, we hope to shine a little bit of light on what has been a difficult time for us as Mac was truly a light for all of us," Gary added in his tribute. "An incredible inspiration to those who knew and loved him, he faced his battle with grace, courage and love."

But what exactly is chordoma and should people worry about this rare form of cancer? Read on to learn what a Canadian expert shared about the disease.

What is chordoma?

Chordoma is a rare type of bone cancer that mostly occurs in the spine or the skull, with the distribution of cases being about the same for both areas. Dr. Gelareh Zadeh, a senior scientist at the Princess Margaret Cancer Centre at the University Health Network, noted the majority of tumours — around 50 per cent — occur in the skull base. Another 20 per cent occur where the skull joins the spine, while 30 per cent develop in the lower spine towards its connection to the pelvis.

"Regardless of the distribution, it seems that there are these two subtypes [of chordoma]: One that responds poorly to treatment because it's aggressive, it grows fast, and one that's more indolent," the head of neurosurgery at Toronto Western Hospital told Yahoo Canada, noting it's one of the key discoveries her lab has made.

"The research we're focusing on is to see how we identify this for patients based on biomarkers."

What are the signs and symptoms of chordoma?

As the tumours grow, they'll put pressure on the areas around the spinal cord or brain, resulting in a range of symptoms that may vary depending on the location. General symptoms include pain, as well as weakness or numbness in the back, arms or legs. Other symptoms of chordoma include sexual dysfunction, endocrine problems and difficulty swallowing.

If the chordoma is at the base of the skull, typical symptoms include:

• Double vision

• Blurry vision

• Headaches

• Facial numbness or pain

If the chordoma is around the tailbone, some symptoms may include:

• A lump you can feel through the skin

• Issues with bladder or bowel function

• Pain in the lower back or tailbone

How is chordoma treated?

Following a diagnosis of chordoma, typically through a biospy or detailed imaging like an MRI or CT scan, a health-care professional will create a treatment plan tailored to the patients specific needs. That plan will be adjusted with a team of experts on cancer, nose and throat therapy, radiation therapy and possibly experts in endocrinology, ophthalmology and rehabilitation.

Surgery is the main form of treatment for chordoma, where operations will aim to remove as much of the cancer as possible without damaging surrounding healthy tissue or causing injury. But Zadeh explained surgery is often not entirely curative.

"There's so much invasion that's already occurred by the time the person is diagnosed that you're limited in how much you can remove," she noted, adding there's enough evidence proving that despite complete resection of these tumours, there can be a recurrence due to remaining microscopic cells.

While follow-up care like radiation is often recommended for patients, Zadeh added some people don't always respond to those treatments.

"We need to determine who responds well to radiation ... and to those who don't, we need to look and think of other therapeutics," she shared."We need to do better at finding targeted therapeutics."

How common is chordoma?

While there's no certain answer why this cancer occurs, some researchers believe it may be caused by mutations in the TBXT gene, according to Cleveland Clinic. Moreover, most chordoma cases happen randomly. Zadeh noted there's a range of one to eight cases per 10 million people each year.

"It's a rare condition," she said. "The awareness needs to come around early detection so that the tumour hasn't become so infiltrated."

While the cancer can develop at any age, it's most often found in people in their 50s and 60s. Cases that form in the base of the skull are typically more common amongst younger patients, while those in the spine more often occur in later ages. Additionally, more than half of all chordoma tumours grow again after an initial treatment.

"About twice as many men are diagnosed with chordoma as women," the Chordoma Foundation noted. "While chordoma can run in families, this is very rare."

Can chordoma be prevented?

When it comes to preventing a serious disease like chordoma, Zadeh reiterated it's best to detect the cancer early, understand its symptoms and be aware that it's a potential diagnosis for people of any age.

"There aren't any known preventative measures," she shared. "There's no known risk factors, there's no activity that results in higher risk for chordoma."

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