Stories of progress, inspiration, and information in overcoming osteosarcoma.

Nout van Barneveld and hugging his girlfriend Roos

‘I Still Believe in My Body’

26-year-old Nout says staying positive is his key for coping with osteosarcoma metastasis.

When Nout (rhymes with “out”) van Barneveld, 26, of Amsterdam, got his biopsy results and found out he had osteosarcoma, his first thoughts were for his loved ones.

“I could handle [the news]. I felt strong,” he says. “For me, it is more difficult to see family and friends dealing with it.”

To cope, Nout has chosen to remain positive throughout his osteosarcoma patient journey, even when things get particularly tough, which they have — more than once.

“I think having a good mindset, it makes you stronger,” he says. “My biggest motivation for sharing my situation is to let people see how important it is to be positive and believe in yourself. I believe in myself; I believe in my body; and I think I can recover and survive this.”

Nout’s Osteosarcoma Story

In fall 2021, Nout went to the doctor with hip pain that he assumed stemmed from a soccer injury. But rather than subsiding, his pain worsened.

“At first, it was not too bad, but then the pain got worse really fast,” he says.

When physical therapy failed to help, Nout’s provider ordered a scan that revealed a tumor on his left lower hip. But it was difficult to accurately assess the abnormality on the scan, Nout says, which resulted in a delayed diagnosis. The medical team performed a biopsy and then surgery to gain a tumor sample to evaluate. Finally, in February 2022, “after much deliberation at a national level,” as Nout puts it, he got the news that it was osteosarcoma.

Surgery to remove a portion of Nout’s hip containing the tumor and replace it with a prosthesis was scheduled for a week later. Then came the chemotherapy.

“My biggest motivation for sharing my situation is to let people see how important it is to be positive and believe in yourself. I believe in myself; I believe in my body; and I think I can recover and survive this.” — Nout van Barneveld

Nout thought he was in the clear until a scan less than a year after he finished chemotherapy showed multiple osteosarcoma metastases in his right upper lobe. Two weeks later, he had surgery to remove it. And about three months after that, two more metastases were found — another in his lung and one in his arm.

“The piece in my arm was little, so they cut it out very easily,” he says. “But I had to have radiation for the other metastasis in my lung.”

Remaining Optimistic

Luckily, Nout has had a solid support system to lean on during the past three tumultuous years. In addition to his parents, his girlfriend of seven years, Roos (pronounced “Rose”), has been by his side.

“I have a very sweet girlfriend with whom I can share everything, and she is my support,” Nout says. “She makes me smile. We laugh a lot together, but even when there is sadness, we share it, allowing it to find a place and be let go.”

Of course, Nout’s osteosarcoma diagnosis has changed their relationship.

“Yes, the relationship has changed because of the situation, but I think it is stronger, because we know each other better now,” he says. “Our conversations have changed from parties, studies, holidays, and jobs to talking about life and happiness. I know she will always be there for me.”

The diagnosis has also changed Nout’s outlook on life.

“Before I was very focused on work and money and things like that,” he says. “But now I am just living day to day, and I am enjoying [life] more than before.” Nout’s motto is: “Don’t take life too seriously, you’re not going to survive it anyway.”

Nout’s most recent scan concluded that the spot on his lung responded well to radiation, and no new abnormalities were found. He will continue to receive regular follow-up scans of his lungs and the rest of his body. He also expects to have additional operations to improve the fit of his new hip, which has been dislocated on three separate occasions by activities as basic as putting on socks. Each dislocation was painful and required a hospital visit to correct.

In addition to this follow-up care, Nout hopes to continue to explore alternative healing methods like acupuncture and supplements along with potential enrollment in osteosarcoma clinical trials abroad.

For now, Nout’s priority is living life to the fullest. While he can no longer play soccer because of the risk to his hip, he can still ride a bike, which is both an enjoyable pastime and important mode of transportation in Amsterdam. He also enjoys making beer, spending time with family and close friends, and traveling as much as possible. He has visited Spain and spent two months in France since his diagnosis. Next up, as soon as he is able: a trip to South America with Roos.

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