Nov. 7, 2022 – Two years ago, then 28-year-old Ashley Teague started 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 camera shop and was out and about “all the time”.
She didn’t know why, but she started losing weight without exercising or changing her diet, she says.
But a few months later, Teague developed intermittent pain in her left side. She went to the doctor who said she needed a blood test. After everything returned to normal, she was told to change her diet and avoid spicy foods, which she says she has done.
A few weeks later, Teague says, she developed black, tarry stools and then diarrhea. She says everything she ate went through within 10 to 15 minutes of eating, so she went back to the doctor.
Concerned, she asked if she should have a colonoscopy. She says she was turned down because she was told she was too young to need the procedure. Desperate for answers, Teague requested additional testing.
“I said OK, can I at least get a CT scan? Can we do some more tests because I know my blood work is fine, but I’m telling you, literally, something is wrong, I don’t feel right. I don’t sleep through the night, I’m woken up to my stomach [sounding like] someone’s fighting in there, it’s just a constant rumble. And she’s like, ‘Okay, it sounds like irritable bowel syndrome, so we’re treating you for irritable bowel syndrome.’”
The results of the CT scan and more blood tests came back fine, but she says the IBS medication didn’t bring any relief.
“I go back [and] I said, “This stuff doesn’t work. The medication for IBS isn’t working,” she says, noting that she had blood in her stool at the time.
Teague’s 56-year-old mother was also a patient at the same doctor’s office where she was treated. After being diagnosed with kidney cancer at 38 and breast cancer at 52, the two-time cancer survivor underwent a genetic test and found she had Lynch syndrome, a genetic disorder caused by a mutation in a gene. It increases the risk of various types of cancer.
The gene is typically inherited and passed from parents to children. If a parent has it, there is a 50% chance that their children will also have the gene. According to the CDC, people with Lynch are more likely to develop colon, endometrial, stomach, liver, kidney, brain, and skin cancers. And they often develop these cancers at an early age — before they turn 50.
Colon cancer and endometrial cancer are the most common cancers caused by Lynch. The probability of developing colorectal cancer can be as high as 80 to 85%.
The syndrome is extremely underdiagnosed. Most people don’t know they have the gene until they get cancer and have a genetic test. Lynch Syndrome International, an organization founded by survivors, their families, and health professionals specializing in the syndrome, estimates that approximately 1 million people in the US have Lynch syndrome, but only 5% are currently diagnosed.
Teague says she told her providers her mother had Lynch syndrome, but they never suggested testing her for the disorder.
“I tell them my mother had Lynch, I tell them she had kidney and breast cancer.”
But when her father had cancerous polyps removed from his colon, “everyone started running to get me a colonoscopy,” she says.
In the meantime 7 months had passed. Teague’s colonoscopy showed a large baseball-sized mass on her colon. It was cancerous.
“My heart just sank,” she says.
Teague says she received 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 fuse it to my small intestine, so I didn’t need a colostomy bag and could still go to the bathroom regularly,” she says.
Teague says the surgeon who treated her was the first doctor who suggested she get tested for Lynch syndrome. Once she did, it wasconfirmed she had the condition. The American Cancer Society estimates that there will be 106,180 new cases of colon cancer in the United States this year. Lynch syndrome causes approximately 4,200 colorectal cancers annually, according to the CDC.
It might seem like what Teague experienced was extreme, but Otis Brawley, MD, a professor of oncology and epidemiology at Johns Hopkins University, says most of what happened during their 7-month journey was not was so unusual.
“If you have someone who’s 28 years old who comes in, ‘I’ve got weight loss, I’ve got unremarkable symptoms,’ the doctor should — because so many people come with it and it’s absolutely nothing — the doctor should talk to them, the Physician should advise them, and the physician should not go directly to a colonoscopy, even though the patient asks for it.”
But “if they have these problems over a longer period of time, several months, well documented, where they see the doctor multiple times, then it might be appropriate to do some imaging to include a colonoscopy,” he says.
Brawley also says people with Lynch should have screening of their colon and several other organs, such as the uterus, starting in their 20s.
His advice to someone in a similar experience to Teague’s: persevere.
“Try to have an open dialogue with you [doctor] and prefertry to stay the same [doctor],” he says. “Let them know that what you tried last week, 2 or 3 or 4 weeks ago isn’t working and you’re still having the symptoms. It’s all part of the diagnostic process. The bug is that some people think, “Oh, I came in and said I had this, the doctor should diagnose it right away.” That’s not the case. Very often, you have to keep going to the doctor. And it’s very common, that people have very subtle tummy problems, and it’s okay to say, “I think it’s irritable bowel syndrome, and let’s do these things, and if it continues, come back.” And that’s how it should be worked on.”
But Brawley concedes that it’s difficult to guess these things when you haven’t been in the room.
That said, “black, tarry stool actually means blood in the stool,” he says. “That would make most doctors want to do some sort of colonoscopy.”
Still, it’s not always cut and dry.
Teague says that when she told doctors she had blood in her stool, they ordered a CT scan, which Brawley said was “the right thing to do.”
Teague was persistent. She made several trips to her doctor’s office. She says at times she was in such pain that she made multiple visits to the emergency room, leaving a paper trail.
It was 7 months from the time she went to the doctor with symptoms to the time the colonoscopy found the tumor. By then she had lost about 30 pounds.
“A little bit outside of what I would consider normal,” says Brawley. “I would say I would hope things like that get diagnosed within 3 or 4 months but 7 months with people having appointment issues and especially during COVID time that’s not so outrageous it’s on the edge what I would call acceptable.”
“Unfortunately, our system within our system isn’t that good at doing things in a meaningful way,” says Brawley.
Mandeep Sawhney, MD, associate professor of medicine at Harvard Medical School and gastroenterologist at Beth Israel Deaconess Medical Center, is an expert on Lynch syndrome. He says rates of colon cancer and the number of people dying from the disease are declining. All good news, but that’s only half the story.
“For reasons we don’t fully understand, rates of colon cancer are increasing in our younger patient population, and this is unusual. People born in 1990 are twice as likely to get colon cancer and four times more likely to get rectal cancer than people born in 1950. A significant proportion of cancers occurring in young patients are the result of syndromes such as Lynch syndrome. And because cancer is uncommon in young patients overall, it often takes much longer to diagnose them because [doctors] Don’t often think that a person in their 20s or 30s could have colon cancer.”
“One of the things that we really talked about with our primary care [doctors] especially with the understanding that there is a significant increase in young people being diagnosed with colon cancer is to keep that up and focus when you see a patient complaining of bleeding from the rectum and when you see a patient Complaining about a change in bowel habits You don’t have a good explanation for this. Don’t ignore young patients with bleeding or these symptoms. Consider a full evaluation as you would an elderly patient.”
Sawhney recommends that children of Lynch syndrome patients between the ages of 16 and 18 be tested.
“If you look at 100 young patients who develop colon cancer, I would say that about 25% to 30% will have Lynch syndrome, but the other 70% we never find an explanation as to why they got cancer at a young age fall ill. And that’s worrying, especially when you consider that we’ve made really big strides in colon cancer, because of early detection, because of the colonoscopy that’s been done. For once, we’re actually seeing a drop in the number of cancers being diagnosed, and that’s great, but at the same time we’re seeing this alarming trend that sometimes, for reasons we just don’t understand, young people in their 20’s or 30’s get colon cancer, which we never have have seen before.
Two years after her surgery, Teague has yet to fully regain her appetite. She says her mental health has deteriorated. She’s scared, a little more paranoid, and says she’s becoming a hypochondriac. But she believes she survived her ordeal for a reason. So she shares her story in hopes that she can help others, especially millennials.
“I want our millennials to know not to get discouraged. Keep going to the doctors, keep making appointments, keep going to the ER, keep a paper trail so once you find a doctor who takes you seriously, you can look back,” she says. “Don’t be discouraged by no insurance, don’t be discouraged by our age, don’t be discouraged by the circles the medical community talks about. Don’t let anyone around you talk, don’t let anyone convince you that you don’t feel what you feel. If you know something is wrong, if you feel something is wrong, keep standing up for yourself.”
Teague says she will have her daughters, ages 10 and 6, tested for Lynch when they turn 18.
A GoFundMe page was set up to help her with her medical bills and get startedExpense for a foundation she is establishing to raise awareness of colon cancer and educate people worldwide about Lynch Syndrome.