Navigating a Colorectal Cancer Diagnosis

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March is National Colorectal Cancer Awareness Month.

In early 2021, Jamie VandenAvond noticed blood in her stool. She was a little concerned, but she was also preoccupied with taking care of a newborn baby in the middle of the pandemic, so she just made a mental note to call her doctor. Then VandenAvond began having urgent bowel movements — running to the bathroom more and more often — and her doctor recommended a colonoscopy.

Although bleeding and a change in bowel movements could signal something serious like colorectal cancer, VandenAvond, 39, didn’t push the panic button. She thought she was too young for something like colorectal cancer. VandenAvond’s husband drove her to the colonoscopy appointment — the procedure typically involves a sedative for relaxation, so patients are told not to go alone — and when she woke up, she was surprised to see him sitting next to her.

“I knew something was wrong because I was told that he wasn’t allowed in (Covid), and they would call him as soon as I was ready to go,” VandenAvond said. “Once I was awake, they told both of us that they found a mass.”

The doctor initially thought the mass was stage 1 colorectal cancer; however, upon further review of the imaging, VandenAvond was diagnosed with stage 3, meaning the cancer cells had spread to nearby lymph nodes but not other parts of the body.

“I can’t ever put into words what that felt like for me — it felt like the wind was taken out of me and everything went black for a moment,” VandenAvond said. “But once I got over the initial shock of ‘Oh my gosh, I’m facing this,’ my next thought and actions were to do anything necessary to beat this and treat this.”

After her diagnosis, VandenAvond met with an oncologist and surgeon to go over her treatment plan, which included removing the 9-inch tumor from her colon plus chemotherapy and radiation, among other procedures.

VandenAvond said she felt confident with her team and understood the expectations moving forward. That is one of the most important steps after a diagnosis, according to Dr. Ayanna Lewis, a gastroenterologist at Mount Sinai South Nassau Hospital and a member of HealthyWomen’s Women’s Health Advisory Council. “Make sure you get all the questions answered by your doctor about the diagnosis,” Lewis said. And even if you like your doctor, there is nothing wrong with getting a second opinion. “Asking for an opinion from another doctor is always a good idea,” Lewis said. “And there are a lot of new developments in colon cancer.”

Another important step after a colorectal cancer diagnosis is identifying a strong support team. “I do find that patients that have support — family and friends they can lean on — generally tend to do better,” Lewis said. In fact, a 2020 study found that patients with colorectal cancer who had low social support before diagnosis had a 42% higher death rate than those with high social support.

Support can mean a lot of different things to different people but, in general, handing over everyday tasks like walking the dog, driving to and from appointments, childcare, and meals are a few ways the support network can help during this time. Lewis said regular visits from friends and family can also help identify serious issues — for example, a reaction to medication — that the patient may not even realize is happening.

For VandenAvond, support from her coworkers was also crucial to her treatment and recovery. “Prior to my diagnosis, I was a workaholic,” she said. “That was probably my biggest adjustment. I was very honest with my managers, and they were very understanding with any appointments I needed to go to, or days where I just wasn’t feeling up to it.”

Mentally, there were many days when VandenAvond wasn’t feeling up to much, and she was honest about that. She started a Facebook page to keep everyone updated on her health. “The writing was therapeutic for me,” she said. “It also kept me from having to give the same update 100 times.”

VandenAvond said online groups for colorectal cancer patients and survivors were helpful for advice and information about preparing for treatment and life after the diagnosis. In addition to social media, multiple organizations, including the American Society of Gastroenterology Endoscopy, offer resources to connect patients with specialists for medical issues and mental health.

“I think a … call with a mental healthcare provider is a good idea,” Lewis said. “Even if you feel you’re a strong person, a diagnosis of cancer changes everything, so setting up an appointment with a psychologist, mental health counselor or psychiatrist — all of those are important to help people process.”

Physically, treatment for colorectal cancer typically involves surgery to remove the affected area and drug treatments to kill cancer cells, depending on the diagnosis. For women with unresectable cancer, where surgery is not possible, or metastatic colorectal cancer, which is when the cancer has spread, the science behind cancer treatments is constantly changing, so it’s important to research other options, including targeted therapies and immunotherapy, as well as clinical trials.

In addition to the physical and mental stress, the cost of treatment for colorectal cancer can be overwhelming. The Centers for Disease Control and Prevention estimates colorectal cancer has the second-highest cost of any cancer in the United States — newly diagnosed patients can spend anywhere between $40,000 to $80,000, depending on diagnosis. To help with that financial burden, organizations such as the Colorectal Cancer Alliance provide assistance for a range of needs, including housing and medical care.

VandenAvond said she was lucky to have a great support system around her and she has no evidence of disease (NED) today. Although people with colorectal cancer have an increased risk of a second type of cancer, VandenAvond said she is scheduled for a colonoscopy once a year and gets scans every three months to make sure everything looks good.

“Life is a little different now because cancer never really leaves you, even when you’re NED or get to remission,” she said. “I just now live life to the fullest, knowing what could happen to me and what to watch out for.”

Colorectal Cancer Alliance

This resource was created with support from Merck.