During her third trimester of pregnancy, Natalie Phelps, 38, started experiencing a lot of pain in her lower back and pelvis, as well as around her rectum. Her doctor suspected it was hemorrhoids and said it might go away after she gave birth. But the pain worsened after childbirth, followed by “unusual bowel movements,” she told TODAY.
At one point, a doctor suggested she see a therapist because she thought Phelps’ symptoms were psychosomatic. She was under a lot of stress after giving birth two weeks early in March 2020, and was caring for her two children during the pandemic lockdown.
A few months later, she had a colonoscopy and finally knew what was wrong
Phelps, 40, from Bainbridge Island, Wash., said: “I had a colonoscopy thinking I was going to wake up with colitis or Crohn’s disease — it wasn’t fun, but it wasn’t. Cancer.” “I woke up from a colonoscopy and they said, ‘We found a very large tumor, almost 100 percent cancer.'”
Third trimester and postpartum symptoms
Phelps recalled that her gynecologist suspected her pain was due to hemorrhoids, and she was surprised she didn’t have them during her first pregnancy. However, it sounds possible.
“When I was discharged, I still (had) this pain, but I was on a lot of antibiotics and painkillers, so it didn’t really register,” she said. “I lost all my baby weight very quickly and I remember (thinking), ‘Wow, I guess breastfeeding does work.'”
Looking back, she realized that pain and rapid weight loss were her first symptoms of colorectal cancer. Six weeks postpartum, her bowel movements changed, she went from constipation to loose stools that were somewhat random. By nine weeks postpartum, Phelps knew her symptoms were unrelated to birth.
“I contacted my OB and she said, ‘This has absolutely nothing to do with postpartum labor,'” she said. “She advised me to see (a gastroenterologist), and in hindsight, I wish I had.”
Instead, Phelps first turned to her primary care physician. Because of the pandemic, doctors wanted virtual visits until she realized how distressed Phelps was, and she “prudently agreed” to an in-person visit, Phelps recalled. But it was delayed due to the lockdown.
“She actually did a rectal exam and didn’t find my tumor, and then … she (requested) to have an ultrasound and an X-ray,” Phelps said. “The test found nothing.”
When Phelps’ symptoms didn’t ease, she went back to her primary care doctor, who performed a pelvic exam but still didn’t find the tumor. Doctors believe Phelps’ difficulties may have been because she had recently given birth and was taking so many antibiotics for the complications she experienced.
“I’ve been pushing back awkwardly. I know the difference between my vagina and my rectum,” Phelps said. “She was like, ‘You should take a lot of probiotics.'”
Phelps tried, but it wasn’t long before she noticed blood and mucus in her stool, and the pain became so severe that she couldn’t function properly.
“I can’t walk. I can’t sit. I cried all night and I texted her in May saying: ‘It’s 4am. I can’t even sleep. I’m on 600mg of ibuprofen 24/7, ‘ said Phelps. “At this point, she responded, ‘I’m prescribing (antidepressant) Cymbalta, and I’ll refer you to a therapist.'”
At first, Phelps wondered if the stress of childbirth and the outbreak of an epidemic might have been the cause of her symptoms.
“I was so exhausted by the isolation and the pain and the horrific birth that I admitted the idea almost only temporarily. I said, ‘Okay, maybe it’s in my head,'” Phelps said . “I’m confused, but I trust my doctor. I love her and think maybe this is something else we should explore. When I look back at those letters…they make me very angry.”
Phelps found no relief from the treatment, and she recalls that even her therapist wondered why she was doing it, since her therapist couldn’t treat her physical pain. So Phelps turned to a doctor friend who suggested she get an MRI and a colonoscopy. But the gastroenterologist in charge of these tests won’t see her until July.
Meanwhile, she visited a naturopathic doctor who did an MRI of Phelps’ lower pelvis. An MRI was negative for cancer, and she had a third rectal exam, which also found nothing.
“I never thought I had cancer. I had a lot of tests,” Phelps said. “The attending doctor also told me… ‘I think you have nerve damage from childbirth.'”
Still, she decided to keep her appointments at the end of July.
“(The gastroenterologist) didn’t even do the tests. He said, you’ve had enough. We’re just going to have a colonoscopy,'” she said.
On July 31, 2020, Phelps learned she had colorectal cancer, which was later identified as stage 4.
“I remember sobbing uncontrollably, thinking I was going to die, leaving my just over 4 months old alone with my husband. I also have a 3-year-old son,” she said. “I was just in shock when I was sobbing on the floor.”
colorectal cancer in young adults
Colorectal cancer has historically affected older adults, said Dr. Fola May, a medical advisor to the charity Fight Colorectal Cancer and associate director of the Kaiser Permanente Center for Health Equity at UCLA.
But “when we looked at data in the United States since the early 1990s, we found a 45 percent increase in the number of people under 50 getting 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 is unclear, but experts have some ideas. For example, it is unlikely that more young adults will develop colorectal cancer due to genetics, because the increase occurs so quickly. “We’ve seen this generation change,” May explained.
The prevailing theory, she said, is a combination of environmental factors, such as diet. But May said researchers were looking at other possible correlations, such as having a certain number of infections as a child and whether a person was breastfeeding.
“We definitely know it’s the environment,” she added.
The U.S. Preventive Services Task Force recommends that people start screening for colorectal cancer at age 45; by 2021, it is age 50. People with a family history of colorectal cancer should start screening earlier. The gold standard for screening is colonoscopy, but many people are wary of getting one.
“In the beginning, people associate pain and discomfort. I like to stress to people: The process is painless,” May said. “We put patients to sleep completely. You may get the best sleep of your life.”
If people are too sensitive about getting a colonoscopy, a home kit can be tried, May said, adding, “The best test is the one you’re going to have.”
May encourages people with colorectal cancer symptoms, regardless of age, to talk to their doctor. These include:
People are often reluctant to talk about their bowel movements, rectum and anus. May wants people to feel more comfortable discussing any changing symptoms with their doctors – even with loved ones – to raise awareness about colorectal cancer.
“There’s a huge amount of stigma around this part of the body, and some of it’s because it’s associated with feces and feces, which are dirty things,” May said. “Colorectal cancer affects everyone…regardless of your race, background.”
Learning to live after treatment
Phelps’ cancer had metastasized to her liver, and she received chemotherapy and radiation from the primary tumor. The cancer cells were still there, and in April 2021, she underwent an 18-hour operation.
“They literally had to cut me open and dig out my pelvis,” Phelps said. “I lost my rectum, my perineum, and two-thirds of my vagina. My uterus and ovaries were removed, and I did Had some reconstructive surgery, a flap made from tissue from my thigh.”
Doctors also removed some of the cancer and she now has a permanent colostomy bag. Still, the cancer cells persisted, and she resumed chemotherapy from January 2022 to May 2022. For months, she felt pain in the chair. She needs additional treatment because her wounds are not healing. As part of her recovery, she needed pelvic floor physiotherapy and regular physiotherapy to relearn to walk because the skin on her thighs was removed.
“My husband and I have only recently been able to have sex. I still have pain (sitting cross-legged),” she said. “I can now sit in a chair without pain.”
Faced with changes in the body, it feels very hard.
“I had a lot of physical issues and was devastated by my old body, no ostomy, no scars on my belly,” Phelps said. “I decided if this was me, I would do my best.”
All of Phelps’ recent scans have been stable, but there are still some tumors in her liver that are too small for surgery. If they grow, she will need more surgery to remove them.
She hopes her story will inspire others to advocate for their health and get screened for colorectal cancer. After her diagnosis, her brother, then 33, underwent a colonoscopy, and doctors removed the precancerous polyp.
“He’s gotten rid of all his grief,” she said. “If you could get screened, you could stop all these surgeries and everything I’ve been through. Omg. If I had this infection at 35, it would have been a whole different story.”
This article was originally published on TODAY.com