In the aftermath of Pro Bowl lineman Trent Williams’ allegation that the Washington Redskins should have done more to diagnose cancer in his head, experts tell SurvivorNet that this rare condition is often misdiagnosed.
“It was cancer,” Williams said. “I had cancer. I had a tumor removed from my skull, attached to my skull. It got pretty serious for a second. I was told some scary things from the doctor. It was definitely nothing to play with, one of the things that changed my outlook on life.”
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William has spoken about the diagnosis to ESPN, saying that he didn’t get the attention he deserved, because the league wanted him to keep playing. “I guess nobody took the time to actually realize, try to see what was really going on there,” Williams said. “Football was more important, and I mean, to me it was more important, too. I was told it was something minor, so I didn’t really question it. But, I mean, the lump continued to grow over the years. It was concerning, but there was no pain involved. If I’m being told by the very people who I put my career in the hands of, they’re telling me that I’m fine, then I’m fine. That’s how I looked at it.”“We literally caught it within weeks of metastasizing through to my brain, to my skull,” Williams said. “Extracting it was the only thing they could do. Doing radiology on it would have put a cap on my life. I think 15 years was the most I would have had after I started chemo. So I had to cut it out.”
Information about dermatofibrosarcoma protuberans
Dermatofibrosarcoma protuberans is a very rare type of sarcoma that begins in connective tissue cells in the middle layer of your skin (dermis), according to the Mayo Clinic. “DFSP is an extremely rare cancer of the soft tissues,” Dr. Reidel told SurvivorNet. It’s part of a large family of cancers collectively known as sarcomas. Sarcomas represent 1 percent fo cancers in adults. There are more than 50 different subtypes and this is just one of them. When you add up all the subtypes, there are about 13,000 diagnoses per year. There are less than a thousand cases in the U.S. per year.”
It can first appear as a bruise or scar, and as it grows, lumps of tissue can form near the surface of the skin. “It’s traditionally a low or intermediate grade – the lesser side. It will commonly present as a lump or a bumb. Because it is typically thought to be low grade, which is typically treated with surgery alone, assuming you can get a wide margin around it. We want what’s called ‘negative margins’ when we’re done, meaning no microscopic disease left behind.”
In order to diagnose the disease, doctors will use a combination of skin examinations, skin biopsy (removing a piece of the tissue for laboratory testing), and in some cases, imaging tests such as MRI’s to better understand the extent of the cancer and plan for treatment.
According to Dr. Reidel, though these are not usually considered to be the riskiest tumors, there is a possibility for them to become a more aggressive and dangerous cancer. “They can transform into a high-grade aggressive fibro-sarcoma. The transformation to a higher grade malignancy can actually result in the development of metastatic disease, which is often incurable. If patients have a biopsy that shows transformation, doctors will do radiation in addition to surgery.”
Dr. Reidel said that there are a few things that indicate this type of cancer to doctors, “the red flags are things that are rapidly growing, things that are painful, anything bigger than a golf ball.”
And in terms of how to prevent this type of cancer, Dr. Reidel the best thing to do is to pay attention to your body. “I think certainly people should be attuned to their body,” he said. “I don’t think every individual needs to do routine skin exams or self-exams, but for things this rare, just having awareness of if something is new, if it’s growing, that really warrants you to seek medical attention.”
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