Powerful Reminder: Don't Ignore Symptoms
- Emmy Award-winning journalist Antonia Hylton, is sharing a powerful lesson she learned after being diagnosed with a rare type of cancer, neuroendocrine tumor, at age 30— Don’t ignore your symptoms
- Hylton, who has a family history of colon cancer, recounted having normalized not feeling her best in the mornings, sharing in a recent interview that she had persistent stomach problems which started up about two years ago. She found out this year that those symptoms were due to the rare cancer she was diagnosed with, something she discovered after getting a colonoscopy.
- Handling a rare disease or cancer can be very overwhelming, but SurvivorNet’s experts have guidance on how to seek out specialized treatment providers.
- More common diseases might not require the same degree of specialized attention, but finding doctors with specific expertise may be necessary for rare ones. In that case, the most effective place to find a specialist is often at academic centers and comprehensive care centers.
- The SurvivorNet Clinical Trial Finder and websites called Clinicaltrials.gov and PubMed are great resources to use if you’re considering experimental treatment for your rare disease. These databases can also help you find doctors who specialize in your disease.
The Harvard University graduate, who is also a co-reporter for the podcast Southlake, was ultimately diagnosed with a neuroendocrine tumor about two years after noticing early symptoms of the rare cancer. She’s now raising awareness on the importance of being your own advocate and putting your health first.
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It wasn’t until this past August that a news segment of Melvin talking about his brother’s colon cancer-related death, and a TikTok video of a 24-year-old woman diagnosed with colon cancer, inspired Hylton to get checked.
“Something about that really stuck with me,” Hylton told TODAY.
Expert Colon Cancer Resources
- Yes, Women Do Get Colon Cancer
- Does Alcohol Impact the Risks for Colon and Other Cancers?
- Common Misconceptions About Colon Cancer
- Anxiety Around Colon Cancer Diagnosis
- Colon Cancer Diagnosis: What Happens After the Colonoscopy
- Colon Cancer Screening Options And Genetics: Myth Busting With Dr. Heather Yeo
Around the time Hylton decided it was time she see a doctor, she recalls her symptoms having worsened, explaining, “I was waking up (and) my face was swollen. I was having trouble going to the bathroom for days on end.”
With knowledge of her family history colon cancer and the high rates of this type of cancer among Black people across the U.S., Hylton made an appointment with a specialist and scheduled her for a colonoscopy.
Three weeks later, on her 30th birthday, she received messages from her doctor notifying her a scan found a polyp, specifically a neuroendocrine tumor.
Luckily, the tumor was found early enough that a “series of procedures to remove tissue and screening tests to see if the cancer had spread” revealed she is now in the “clear” with no more signs of cancer.
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Telling TODAY what her health scare taught her, Hylton said, “I learned a really important lesson at 30 to listen to myself and to put myself first.
“I love my job. I worked hard here at NBC, and I’m not going to stop doing that. But I’ve learned the lesson that I really need to put my health first and not push these things off.”
She added, “On my father’s side, (I have) the more classic colon cancer and the symptoms you typically think about. And then on my mom’s side, my grandmother … actually had a neuroendocrine tumor as well. I’m grateful that I have a family that talks about these things, so I was armed with that information.”
What is Neuroendocrine Tumor (NET)?
According to the National Cancer Institute (NCI), a neuroendocrine tumor develops from one’s neuroendocrine cells.
“Neuroendocrine cells receive and send messages through hormones to help the body function. Neuroendocrine cells are found in organs throughout the body. Neuroendocrine tumor used to be called carcinoid tumor,” the NCI explains.
“Neuroendocrine tumors often grow very slowly. In children and young adults, neuroendocrine tumors are most often found in the appendix, called appendiceal neuroendocrine tumors, or in the lungs, called bronchial tumors. In adults, neuroendocrine tumors are most often found in the digestive tract, called GI NET. This tumor may spread to other parts of the body but does so more often in adults than children.”
People with NETs may notice symptoms, however, others may not — it all depends on where the tumor is located in the body.
“Patients with appendiceal neuroendocrine tumors usually have symptoms of appendicitis, such as pain in the abdomen. They may be diagnosed later with carcinoid tumor if the doctor removes the appendix and finds a tumor.
Symptoms of a neuroendocrine tumor may include:
- Pain in the abdomen
- Nausea or vomiting
Screening for NETs will consist of urine or blood tests to check hormone levels, in addition to CT, MRIs or PET scans, to see the size of the tumor. A biopsy is also done to confirmed whether the tumor is a neuroendocrine tumor.
Colon Cancer: A Silent Killer
Dr. Heather Yeo, a colorectal surgeon and surgical oncologist at Weill Cornell Medicine and New York-Presbyterian, previously told SurvivorNet, “Colon cancer is considered a silent and deadly killer.
“What happens is people often don’t know that they have colon cancer. They don’t have any symptoms. That’s why we screen for colon cancer in the United States.”
“You should be screened for colon cancer, even if you have no family history. Once you have your initial screening colonoscopy, if there are no polyps and you have no high-risk factors, usually once every 10 years is fine,” she advises.
“Colon cancer is a slowly progressing cancer. If you have any family history of colon cancer, you should be screened about 10 years before your family member had colon cancer. So if you have a family member that was 53, you should be screened at 43.”
Screening for Colon Cancer
Luckily, most colon cancers can be prevented through routine screenings. Colon cancer screenings usually involve a colonoscopy, in which a long thin tube attached to a camera is used to examine the colon and rectum.
The advantage of a colonoscopy is that your doctor can remove any polyps found during the test before they turn into cancer. If no polyps are discovered, the next screening won’t be needed for about 10 years.
A colonoscopy isn’t the only colon cancer screening test. There are other options, including stool tests that detect blood or DNA, and flexible sigmoidoscopy, which checks only the lower third of your colon.
Ask your doctor whether any of these tests would be good additions to a colonoscopy, based on your risks and/or personal preferences.
“We know that colon cancers can be prevented when polyps are found early,” Dr. Yeo added. “Lowering the screening age helps somewhat with this, but access to care is a real problem.”
The American Gastrointestinal Association lowered the recommended initial age for a colorectal screening from 50 to 45.
“The fact that we have now reduced the screening age to 45 is a huge step,” Michael Sapienza, CEO of Colorectal Cancer Alliance, told SurvivorNet in an earlier conversation.
“It will allow us to potentially screen 15 million more eligible Americans a year and will certainly save lives. I also think what it’ll do is bring much-needed attention that even if you’re younger than 45 you should be paying more attention. I think that’s also a really important message.”
Questions for Your Doctor
If you are concerned about symptoms you’re experiencing or your risk of developing colorectal cancer, here are some questions you may consider asking your doctor:
- Do you recommend I get a colonoscopy, even if I am younger than the recommended age?
- Which of my symptoms are similar to those from colorectal cancer?
- How can I prepare for the colonoscopy?
- What will the results tell me?
- When should I come back to reassess my symptoms/condition?
Colon Cancer Symptoms and Risk Factors
Despite more young people getting diagnosed with colon cancer, people older than 50 years old are still at the greatest risk, with this age group making up about 90% of the cases.
Other risk factors for developing colon cancer include:
- Having inflammatory bowel disease
- Having a family history of colon cancer
- Not exercising very often
- Eating a diet high in meat
- Being overweight or obese
- Using excessive alcohol and tobacco
Colon cancer symptoms and warning signs include:
- Change in bowel movement
- Bloody stool
- Diarrhea, constipation or feeling the bowel does not empty completely
- Unexplained weight loss
- Constant abdominal pain or cramps
If you notice concerning symptoms or changes to your body, it’s important to discuss them with your doctor promptly.
Have a Rare Disease? Here are Some Resources
All sorts of feelings of anxiety, fear, and loneliness can come with the diagnosis of a rare disease, like the one Antonia Hylton battled. But it’s important to know you’re not alone. Below are some helpful resources for the many people affected by lesser-known or less-researched diseases.
Academic Centers and Comprehensive Care Centers
For some rare disease warriors, community centers provide great treatment options. But for people with rare conditions, cancer or otherwise, 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.
“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 services, and 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 board, a 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.”
Clinicaltrials.gov and the SurvivorNet Clinical Trial Finder
Another place to turn to when you’ve been diagnosed with a rare disease and you’re considering experimental treatment) or trying to find specialists) is clinicaltrials.gov, a database maintained by the U.S. government that compiles privately and publicly funded clinical trials conducted around the world.
Clinical trials themselves are research studies that compare the most effective known treatment for a specific type or stage of a disease with a new approach.
Clinicaltrials.gov can help you explore possible treatment options by looking at trials that are actively recruiting. The site also provides the information of some of the most specialized doctors in a specific field since they often end up leading clinical trials that advance our understanding of diseases.
By searching your disease on Clinicaltrials.gov, you will usually come across a list of many studies. The lead researcher will be listed under the heading, “Investigators.” Lead researchers in studies on rare diseases are typically doctors who have specialized in the study of that condition.
And if you’d prefer to search for clinical trials on a more 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.
To use the SurvivorNet Clinical Trial Finder, simply answer some basic questions using our custom-designed chat feature and we’ll send clinical trial options within your region right to your email. In simplifying the search, we hope to offer multiple opportunities for clinical trial sponsors and clinical research organizations to engage with patients.
“Clinical trials are critical to the development of new therapies, and as we live through this extraordinary revolution in genomics, immunotherapy and targeted therapy, it’s clear that one of the most pressing needs for patients, clinical trials sponsors, and researchers is simply a better way to find patients,” SurvivorNet CEO Steve Alperin said. “Even one percent more people successfully enrolled in clinical trials can change the world.”
Similar to clinicaltrials.gov, PubMed is another place to turn if you’re looking to research your rare disease. This website includes more than 33 million citations for biomedical literature from MEDLINE, life science journals, and online books.
If you type in your disease, you’ll see a list of studies and articles about the condition. You can even add a filter to only look at clinical trial information. By looking at the doctors associated with the published clinical trial results and other articles, you may be able to find doctors that specialize in research for your disease.
For those who’ve been recently diagnosed with a rare disease, we also want to highlight reasons for hope since there is something of a revolution going on in the development of drugs for rare diseases.
The sequencing of the human genome has enabled doctors to take new approaches to treating some of these uncommon conditions. One step you may take after being diagnosed with a rare disease is looking into the drug companies developing drugs to treat your condition.
Compassionate Use and Off-Label Use
Drug companies may be able to help patients enroll in clinical trials, and in some rare cases, they may even be able to offer “compassionate use.” Compassionate drug use makes a new drug that has not been fully approved available to a patient facing a serious illness. This only typically happens when a patient has exhausted all other treatment options, but it is an important option to understand.
Similarly, researching drug companies may be a path to “off-label” drug use. Off-label drug use involves taking a drug that has been approved for treating one condition in the hopes that it may treat another condition that it has not yet been approved for.
Contributing: SurvivorNet Staff