Nov. 7, 2022 — Two years ago, then 28-year-old Ashley Teague began losing weight. At the time, the Indianapolis, IN, native and mother of two was 6-foot-1 and weighed about 270 pounds.
She chalked it up to her busy schedule. She had started a photography business and was travelling “all the time.”
She didn’t know why, but she began losing weight without exercising and without changing her diet, she says.
But a few months later, Teague began having intermittent pain on her left side. She went to see he doctor, who said she needed blood work. After everything came back normal, she was told to change her diet and avoid spicy food, which she says she did.
A few weeks later, Teague says she began having black, tar-like stools and then diarrhea. She says whatever she ate went right through her within 10 to 15 minutes of eating, so she went back to the doctor.
Worried, she questioned if she should get a colonoscopy. She says she was turned down, being told she was too young to need the procedure. Desperate for answers, Teague asked for additional tests.
“I said OK, can I at least get a CT? Can we just run some more tests because I know my blood work came back fine, but I’m literally telling you, something’s not right, I’m not feeling right. I’m not sleeping through the night, I’m being woke up to my stomach [sounding like] somebody’s fighting in there, it’s just a constant rumble. And she’s like ‘OK, it sounds like IBS, so we’re going to treat you for IBS.’”
The results of the CT scan and more blood work came back fine, but she says the IBS medication provided no relief.
“I go back [and] I said, “This stuff isn’t working. The medicine for IBS isn’t working,” she says, noting that at this point, she was having blood in her stools.
Teague’s 56-year-old mother was also a patient at the same medical practice where she was being treated. After being diagnosed with kidney cancer at 38 and then breast cancer at 52, the two-time cancer survivor underwent genetic testing and found out she had Lynch syndrome, which is a genetic disorder caused by a mutation in a gene. It increases the risk of various types of cancer.
The gene typically is inherited and is passed from parents to children. If one parent has it, there’s a 50% chance their children will also have the gene. According to the CDC, people with Lynch are more likely to get colorectal, endometrial, stomach, liver, kidney, brain, and skin cancers. And they often develop these cancers at an early age — before they turn 50.
Colorectal and endometrial cancers are the most common cancers caused by Lynch. The likelihood of getting colon cancer if you have the condition can be as high as 80% to 85%.
The syndrome is extremely underdiagnosed. Most people aren’t aware they have the gene until they get cancer and undergo genetic testing. Lynch Syndrome International, an organization founded by survivors, their families, and health experts specializing in the syndrome, estimates that about 1 million people in the U.S. have Lynch syndrome but only 5% are currently diagnosed.
Teague says she told her providers that her mother had Lynch syndrome, but they never suggested she be tested for the disorder.
“I’m telling them my mom had Lynch, I’m telling them that she had kidney and breast cancer.”
But when her father had cancerous polyps removed from his colon, “all of a sudden everybody’s scrambling to get me a colonoscopy,” she says.
By now, 7 months had gone by. Teague’s colonoscopy revealed a large mass that was the size of a baseball on her colon. It was cancerous.
“My heart just sank,” she says.
Teague says she got excellent care from her surgeon. But unfortunately, most of her colon had to be removed.
“They left me about 5 to 6 inches of colon. He was able to merge it with my small intestine so that I wouldn’t have to have a colostomy bag and would still be able to use the restroom regularly,” she says.
Teague says the surgeon who treated her was the first doctor to suggest she get tested for Lynch syndrome. Once she did, it wasconfirmed that she did have the condition. The American Cancer Society estimates there will be 106,180 new cases of colon cancer in the U.S. this year. Approximately 4,200 colorectal cancers a year are caused by Lynch syndrome, according to the CDC.
It may seem like what Teague experienced is extreme, but Otis Brawley, MD, professor of oncology and epidemiology at Johns Hopkins University, says most of what happened during her 7-month journey was not so out of the ordinary.
“If you have someone who is 28 years old who comes in, ‘I’ve got weight loss, I’ve got nondescript symptoms,’ the doctor should — because so many people come in with that and it is absolutely nothing — the doctor should talk to them, the doctor should counsel them, and the doctor should not go directly to a colonoscopy even though the patient is asking for one.”
But “if they have a prolonged period of having these problems, several months, well documented where they come back to the doctor several times, then it might be appropriate to do some imaging to include colonoscopy,” he says.
Brawley also says that people with Lynch should undergo surveillance of their colon and several other organs like the uterus, starting in their 20s.
His advice to someone having a similar experience to Teague: Be persistent.
“Try to keep an open dialogue with your [doctor] and preferablytry to keep the same [doctor],” he says. “Let them know that what you started trying out last week, 2 or 3 or 4 weeks ago, is not working and you still have the symptoms. That is all part of the diagnostic process. The mistake is some people think, ‘Oh, I came in and I said I had this, the doctor should diagnosis it immediately.’ That is not the case. Very frequently you have to go back over and over again to see the doctor. And it’s very common for people to have very nondescript abdominal problems, and it’s fine to say ‘I believe this is irritable bowel syndrome and let’s do these things and if it continues, come back.’ And that’s the way it should be worked at.”
But Brawley concedes it’s hard to second guess these things when you weren’t in the room.
That said, “black, tarry stools actually mean blood in the stools,” he says. “That would prompt most doctors to want to do some type of colonoscopy.”
Still, it’s not always cut and dry.
Teague says when she told the doctors there was blood in her stools, they ordered a CT scan, which Brawley says was “the appropriate thing to do.”
Teague was persistent. She made multiple trips to her doctor’s office. She says sometimes she was in such pain she made several visits to the emergency room, creating a paper trail.
From the time she started going to the doctor with symptoms to the time the colonoscopy found the tumor was 7 months. By then, she had lost about 30 pounds.
“A little bit outside of the length of time that it would be, that I would consider to be normal,” Brawley says. “I would say, I would hope that these sorts of things would be diagnosed within 3 or 4 months, but 7 months with folks having appointment issues and especially during COVID time, that’s not that outrageous, it’s on the edge of what I would call acceptable.”
“Unfortunately, in our system, our system is not that great in doing things expediently,” Brawley says.
Mandeep Sawhney, MD, associate professor of medicine at Harvard Medical School and a gastroenterologist at Beth Israel Deaconess Medical Center, is a Lynch syndrome expert. He says the rates of colon cancer and the number of people dying from the disease are going down. All good news, but that’s only half the story.
“For reasons that we don’t fully understand, the rates of colon cancer are increasing in our younger patient population, and that’s unusual. People born in 1990 are two times more likely to develop colon cancer and four times more likely to develop rectal cancer than people born in 1950. A significant proportion of cancers that develop in young patients are the result of syndromes like Lynch syndrome. And because cancers overall are uncommon in young patients, it often takes much longer for them to get diagnosed because [doctors] don’t often think that a person in their 20s or 30s could have colon cancer.”
“One of the things we’ve been really been talking to our primary care [doctors] about, especially with the understanding that there’s a marked increase in young people getting colon cancer, is to keep that up and center when you see a patient who’s complaining of bleeding from rectum and when you see a patient who’s complaining of change in bowel habits that you don’t have a good explanation for. Don’t ignore young patients with bleeding or these symptoms. Consider a full evaluation like you would with an older patient.”
Sawhney recommends that children of Lynch syndrome patients get tested between 16 to 18 years of age.
“If you look at 100 young patients who develop colon cancer, I’d say about 25% to 30% will have Lynch syndrome, but the other 70% we never come up with an explanation for why they develop cancer at a young age. And that’s worrisome, especially considering that we really made big strides in colon cancer because of screening, because of colonoscopy that are being done. For once, we are actually seeing a drop in the number of cancers that are being diagnosed, and that’s great, but at the same time we’re seeing this alarming trend where for reasons we just don’t understand, young people, sometimes in their 20s or 30s are getting colon cancer, which we never really saw before.”
Two years out from her surgery, Teague has not fully regained her appetite. She says her mental health has deteriorated. She has anxiety, is a bit more paranoid, and says she’s becoming a hypochondriac. But she believes she survived her ordeal for a reason. So she’s sharing her story in the hopes it may help others, especially millennials.
“I do want our millennials to know do not be discouraged. Keep going to the doctors, keep making the appointments, keep going to the ER, create a paper trail so once you do get a doctor who’s going to take you seriously, they can look back,” she says. “Do not be discouraged by no insurance, do not be discouraged by our age, do not be discouraged by the circles that the medical professionals talk. Don’t let anyone talk circles around you, don’t let anyone convince you that you’re not feeling what you’re feeling. If you know something’s not right, if you feel something’s not right, keep advocating for yourself.”
Teague says she will have her daughters, ages 10 and 6, tested for Lynch when they turn 18.
A GoFundMe page has been set up to help with her medical bills as well as the startupcosts for a foundation she’s creating to shine a light on colon cancer awareness and educate people globally about Lynch syndrome.