During her third trimester of pregnancy, Natalie Phelps, then 38, began experiencing a lot of pain in her lower back and pelvis, and around her rectum. Her doctor suspected it was hemorrhoids and said it would likely go away after she gave birth. But the pain worsened after delivery, and next came the “unusual bowel movements,” she told TODAY.
At one point, a doctor recommended she see a therapist because she believed Phelps’ symptoms were psychosomatic; she was under a lot of stress after giving birth two weeks early in March 2020, and she was caring for two kids during pandemic lockdown.
Months later, she had a colonoscopy and finally learned what was wrong
“I went into the colonoscopy thinking I was going to wake up with colitis or Crohn’s — something not fun, but not cancer,” Phelps, now 40, from Bainbridge Island, Washington, said. “I woke up from the colonoscopy and they said, ‘We found a very large tumor, and it is almost 100% cancer.”
Late pregnancy and postpartum symptoms
Phelps recalled feeling surprised her OB-GYN suspected her pain was due to hemorrhoids because she didn’t have them in her first pregnancy. Still, it sounded possible.
“When I was discharged, I still (had) this pain, but I was on a lot of antibiotics and pain medication, so it didn’t really register,” she said. “I lost all the baby weight really fast, and I remember (thinking), ‘Wow, I guess that breastfeeding really does work.’”
Looking back, she realized that the pain and rapid weight loss were her first symptoms of colorectal cancer. Six weeks postpartum, her bowel movements changed, and she went from being constipated to having loose stools somewhat randomly. By nine weeks postpartum, Phelps knew her symptoms were not related to birth.
“I reached out to my OB, and she’s like, ‘This is absolutely not related to postpartum delivery anymore,” she said. “She recommended I go to a (gastroenterologist) and in hindsight I wish I had.”
Instead, Phelps turned to her primary care physician first. The doctor wanted a virtual visit due to the pandemic until she realized how much pain Phelps was in, and she “cautiously agreed” to an in person visit, Phelps recalled. But it was delayed thanks to lockdown.
“She actually did a rectal exam and didn’t find my tumor, and then … she (ordered) an ultrasound and an X-ray,” Phelps said. “The tests did not reveal anything.”
When Phelps’ symptoms didn’t abate, she went back to her primary care doctor, who performed a pelvic exam and still didn’t find the tumor. The doctor suggested that maybe Phelps’ difficulties were from recently giving birth and taking so many antibiotics for the complications she experienced.
“I kept sort of awkwardly pushing back. I know the difference between my vagina and my rectum,” Phelps said. “She was like, ‘You should just take a lot of probiotics.’”
Phelps tried that, but soon after, she noticed blood and mucous in her stool, and the pain became so intense she couldn’t function.
“I couldn’t walk. I couldn’t sit. I was up all night in tears, and I sent her a message in May and said, ‘It’s 4 a.m.. I can’t even sleep. I’m taking 600 mg of ibuprofen around the clock,’” Phelps said. “At which point, she replied, ‘I’m putting in a prescription for (antidepressant) Cymbalta, and I’m going to refer you to a therapist.’”
At first, Phelps wondered if the stress of giving birth mixed with the onset of the pandemic could be the cause of her symptoms.
“I was so rundown from being in isolation, from being in pain, from having this terrible birth that I almost just conceded to this idea for a moment. I said, ‘Well, maybe it is in my mind,’” Phelps said. “I was just confused, but I trusted my doctor. I loved her and thought maybe this is something else we should explore. When I look back at those correspondences … they make me really angry.”
Phelps didn’t find any relief with therapy, recalling that even her therapist wondered why she was doing it, as her therapist couldn’t treat her physical pain. So, Phelps turned to a friend who’s a doctor, who recommended she undergo an MRI and colonoscopy. But the GI doctor who’d administer these exams couldn’t see her until July.
Meanwhile, she visited a naturopathic practitioner who ordered an MRI for Phelps’ lower pelvis. The MRI looked negative for cancer, and she had a third rectal exam that also found nothing.
“I was not thinking I had cancer at all. I had so many tests,” Phelps said. “The primary doctor also told me … ‘I think you have nerve damage from giving birth.’”
Still, she decided to keep her appointment at the end of July.
“The (GI doctor) didn’t even do an exam. He said, ‘You’ve suffered enough. We’re just going to do a colonoscopy,’” she said.
On July 31, 2020, Phelps learned she had colorectal cancer, which was later determined to be stage 4.
“I remember sobbing uncontrollably that I thought that I was going to die and leave my child who was just over 4 months old alone with my husband. And I also had a 3-year-old son,” she said. “I was just in shock literally on the floor sobbing.”
Colorectal cancer in young people
Historically, colorectal cancer has affected older people, said Dr. Fola May, a medical advisor for the charity Fight Colorectal Cancer and associate director of the Kaiser Permanente Center for Health Equity at University of California, Los Angeles.
But “when we look at the data in the United States since the early 1990s, we’ve had a 45% increase in the number of people under 50 that get colorectal cancer,” May told TODAY. “We need to be on the lookout for this disease in people in their 40s and 50s.”
The exact reason for this shift remains unclear, but experts have some ideas. For example, it’s unlikely that more young people are developing colorectal cancer due to their genetics, as the increase has happened too quickly. “We’ve seen this change over one generation,” May explained.
She said the prevailing theory is a combination of environmental factors, like diet. But researchers are looking into other possible correlations, such as having a certain number of infections as a child and whether a person was breastfed, May said.
“One thing we know for sure that it’s environment,” she added.
The United States Preventative Services Task Force recommends people start screening for colorectal cancer starting at 45; until 2021, it was at 50. People with a family history of colorectal cancer should start screening earlier. The gold standard of screening is a colonoscopy, but many feel wary about undergoing one.
“Off the bat, people have an association with pain and discomfort. I like to emphasize to people: This procedure is painless,” May said. “We put patients to sleep completely. You probably get the best sleep of your life.”
May said there are at home kits that people can try if they’re too squeamish about undergoing the colonoscopy, adding, “The best test is the test you’re going to get done.”
May encourages people who experience colorectal cancer symptoms, regardless of age, to speak to their doctor. These include:
People often hesitate to talk about their bowel movements, rectums and anuses. May hopes that people will be more comfortable discussing any changing symptoms with their doctors — and even loved ones to raise awareness of colorectal cancer.
“There is a huge stigma about this part of the body and some of it is because it’s associated with poop and stool, which are dirty matters,” May said. “Colorectal cancer affects everyone … no matter your race, your background.”
Learning to live with the aftermath of treatment
Phelps’ cancer had metastasized to her liver, and she underwent chemotherapy and radiation on her primary tumor. The cancer cells remained, and in April 2021, she underwent an 18-hour surgery.
“They really had to cut me open and scoop out my pelvis,” Phelps said. “I lost my rectum, my perineum, two thirds of my vagina. My uterus and ovaries were all removed, and I had some reconstructive surgery with a flap made from tissue from my thigh.”
Doctors also removed some of the cancer, and she now has a permanent colostomy bag. Still, cancer cells remained, and she resumed chemotherapy from January to May 2022. For months, she couldn’t sit in a chair without pain. She needed additional treatments because her wounds weren’t healing. As part of recovery, she needed pelvic floor physical therapy and regular physical therapy to learn walk again due skin being removed from her thigh.
“My husband and I only recently have been able to have sex. I still have pain (sitting cross legged),” she said. “I can sit in a chair now without pain.”
Facing the changes to her body felt trying.
“I’ve had a lot of body issues, and a lot of mourning for my old body, for not having an ostomy, for not having scars all over my abdomen,” Phelps said. “I decided if this is who I am, I am going to make the best of it.”
All of Phelps’ recent scans have been stable, but she still has some tumors on her liver that are too small to operate on. If they grow, she’ll need more surgery to have them removed.
She hopes her story encourages others to advocate for their health and to be screened for colorectal cancer. After her diagnosis, her brother, who was then 33, underwent a colonoscopy, and doctors removed pre-cancerous polyps.
“He’s been saved all this grief,” she said. “If you can get screened, you can prevent all this surgery and everything I’ve gone through. Gosh. If I had caught this when I was 35, it would have been a completely different story.”