Advocating for Your Health
- Football star Trent Williams was diagnosed with a rare cancer called dermatofibrosarcoma protuberans (DFSP) after multiple years of doctors dismissing his concerns. Today, he is cancer-free and remains one of the best offensive lineman in the NFL.
- Tackling a rare disease can be difficult, so you might want to consider seeking more specialized care from academic centers and comprehensive care centers. Clinical trials can also be a good option for some people with rare diseases, but it’s important to remember that clinical trials aren't for everybody and going into a study does not necessarily mean you'll receive better care than the standard treatment.
- Being your own advocate can be key to getting a correct cancer diagnosis and obtaining the best treatment possible while dealing with a diagnosis. One of our experts says there should be a plan for what your doctor is going to do for you after you leave every appointment.
- Resilience is not an uncommon trait amongst cancer warriors. Danielle Ripley-Burgess, a two-time colon cancer survivor, says her cancer journey helped her uncover "some beautiful things: Wisdom. Love. Life purpose. Priorities."
Williams wears number 17 for the San Francisco 49ers. And the 6-foot-5-inch offensive tackle has not let a cancer journey just a few years ago slow him down in the slightest. He did miss a few of the 49ers' games due to a high ankle sprain he suffered in the team’s week three loss to the Denver Broncos, but he’s since returned to the field and started in every other game this season.
Read MoreAs far as having a history of superb playing goes, Williams is one of the best offensive players in the league. Just last year, he was even chosen as left tackle for the 2021 All-Pro Team. And though we have a ways to go before NFL awards season this year, The Athletic NFL staff mentioned him during their vote for the 2022 midseason All-Pro Team offensive tackle selections.
“[Andrew] Thomas finished ahead of perennial Pro Bowl selection Trent Williams, who despite missing three games with an ankle sprain, remains one of the NFL's best left tackles,” the report reads.
Playing such a high caliber of football is impressive in and of itself, but it’s even more impressive considering all that Williams has overcome in recent years.
Trent Williams’ Cancer Journey
When Trent Williams found a bump on his head in 2014, he "immediately called the trainer and booked a doctor appointment the next day." He was told by the doctor for his former team, the Washington Commanders, that he had nothing to worry about and that it was just a cyst.
But "the cyst" only continued to go grow. So, Williams finally laid down the law in 2019 and refused to take "no," for an answer.
"I went in the training room and closed the door and said, 'You're gonna call the doctor right now,’" he said on the “I Am Athlete” show.
Williams was finally sent to a specialist who removed the lump. It was indeed a tumor.
Cancer Research Legend Urges Patients to Get Multiple Opinions
Even then, his doctors insisted it was probably benign. Williams went in to see an oncologist, who was allegedly shocked that the athlete's team hadn't done anything about the bump on his head years earlier. Williams was then finally diagnosed with a cancer called dermatofibrosarcoma protuberans (DFSP), a rare type of skin cancer that starts in connective tissue cells in the middle layer of the skin (dermis).
"Probably 99 percent of the time those doctors (who examined Williams) would have been right," Dr. Richard Reidel, a medical oncologist at Duke University Cancer Institute, told SurvivorNet of Williams’ very tough disease to diagnose. "It's not uncommon for these to be misdiagnosed as something else, because they are so rare."
The young father was then told by another doctor to "spend as much time as possible with your children," as his days were numbered and he needed to "get his affairs in order."
Finally, Williams finally caught a break upon discovering that his cancer had not metastasized through his skull, and he would be able to undergo treatment. Today, he is cancer-free.
"I'm blessed man, I'm blessed," he said.
Williams wasn't able to sue his former team because of a "stipulation" in the league's agreement. But the top offensive lineman was traded to the San Francisco 49ers and is happy to continue performing at the most elite level.
Tackling a Rare Disease
For some cancer warriors, community oncology provides great treatment options. But for people with rare cancers, more specialized care may be required. In that case, the most effective place to find a specialist is often at academic centers and comprehensive care centers.
In a previous conversation with SurvivorNet, Dr. Kenneth Miller, director of outpatient oncology at the University of Maryland's comprehensive cancer center, explained what differentiates a "comprehensive cancer center" from other treatment providers.
Seeking Care at a Comprehensive Cancer Center
"Pretty much automatically, there's going to be a team approach [to your care]," Dr. Miller said. "Surgical oncology, medical oncology, radiation oncology, and all the support servicesand also wonderful pathology and radiology."
Dr. Miller added that at a comprehensive cancer center, all of these different specialists work together as a team to help you find the best course of treatment for your specific kind of cancer.
"We call it a tumor boarda group to go through all the details of your case… so you get a group of very smart people coming up with a plan together that is hopefully optimal and gives you the best chance of doing well."
Clinical trials are also an option to consider when dealing with a rare disease. These research studies compare the most effective known treatment for a specific type or stage of a disease with a new approach.
Dr. Beth Karlan, a gynecologic oncologist with UCLA Health, previously told SurvivorNet that clinical trials can play an important role for some patients' treatment, but they also serve a larger purpose.
"Clinical trials hopefully can benefit you, but is also providing very, very vital information to the whole scientific community about the effectiveness of these treatments," Dr. Karlan said. "We need everyone to be partners with us if we're ever going to truly cure cancer or prevent people from having to die from cancer."
That being said, it's important to remember that clinical trials aren't for everybody. And going into a study does not necessarily mean you'll receive better care than the standard treatment.
If you want to search for clinical trials on a user-friendly site, try SurvivorNet's new A.I. driven tool built on top of clinicaltrials.gov: the SurvivorNet Clinical Trial Finder. This tool is updated daily and gives users access to more than 100,000+ individual clinical trials to help them find treatment options.
The Importance of Advocating for Your Health
Whether you are currently battling cancer or worried that you might have it, it's always important to advocate for your health. Cancer is an incredibly serious disease, and you have every right to insist that your doctors investigate any possible signs of cancer.
And, as we saw in the case of Trent Williams, it's always crucial to speak up about any changes to your health even if you don't think there's anything sinister behind them.
Be Pushy, Be Your Own Advocate… Don't Settle
"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. Zuri Murrell, director of the Cedars-Sinai Colorectal Cancer Center, told SurvivorNet in a previous interview. "And I think that that's totally fair. And me as a health professional that's what I do for all of my patients."
In a previous interview with SurvivorNet, April Knowles explained how she became a breast cancer advocate after her doctor dismissed the lump in her breast as a side effect of her menstrual period. Unfortunately, that dismissal was a mistake. Knowles was diagnosed with metastatic breast cancer at age 39. She said the experience taught her the importance of listening to her body and speaking up when something doesn't feel right.
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"I wanted my doctor to like me," she said. "I think women, especially young women, are really used to being dismissed by their doctors."
Figuring out whether or not you actually have cancer based on possible symptoms is critical because early detection may help with treatment and outcomes. Seeking multiple opinions is one way to ensure you're getting the care and attention you need.
Another thing to remember is that not all doctors are in agreement. Recommendations for further testing or treatment options can vary, and sometimes it's essential to talk with multiple medical professionals.
The Resilience of Cancer Warriors
Here at SurvivorNet, we get to share stories of resilience all the time because there's no shortage of brave cancer warriors holding onto hope in the face of adversity and achieving amazing things.
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Danielle Ripley-Burgess, a two-time colon cancer survivor, is another resilient cancer survivor like Trent Williams. She was first diagnosed with colon cancer in high school and proceeded to beat the disease not once, but twice.
Understandably so, Ripley-Burgess has had to work through a lot of complex emotions that came with her cancer journey. Even still, she's always managed to look at life with a positive attitude.
"As I've worked through the complex emotions of cancer, I've uncovered some beautiful things: Wisdom. Love. Life purpose. Priorities," she previously told SurvivorNet. "I carry a very real sense that life is short, and I'm grateful to be living it! This has made me optimistic.
"Optimism doesn't mean that fear, pain and division don't exist they do. Our world is full of negativity, judgment and hate. Optimism means that I believe there's always good to be found despite the bad, and this is what my life is centered around."
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She moves through life with a sense of purpose unique to someone who's been faced with the darkest of times. Happily in remission today, she's determined to, one day, leave the world better than she found it.
"We can choose to stay positive, treat others with respect and look for the light in spite of the darkness," she said. "This type of attitude and behavior will lead to the kind of legacies I believe all of us hope to leave."
Contributing: Marisa Sullivan, Joe Kerwin
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