March 21, 2022

What Comes Next After a Colorectal Cancer Diagnosis?

This piece originally appeared on katiecouric.com.

Finding out you have cancer is terrifying. We’ve got some tips on how to make the days after a diagnosis a bit easier.

At 43, Dan Clementi thought he was healthy and in good shape, aside from a cough that wouldn’t go away and the fact that he could no longer climb a flight of stairs without getting winded. With a push from his wife and friends, the police officer and father of four saw a doctor who suggested a colonoscopy. He was diagnosed with colon cancer. “I knew something was wrong,” Clementi says. “But I didn’t expect it to be cancer.”

This year, more than 150,000 people will be diagnosed with colorectal cancer and more than 50,000 will die from the disease, according to the American Cancer Society. While this number might sound intimidating on its own, it’s actually pretty encouraging when put into a larger context: The death rate for colorectal cancer dropped by 56 percent between 1970 and 2019. That drop is largely due to innovations in screening techniques coupled with the simple fact that more people are getting screened — which is why for adults 45 or older, there’s no time like the present to talk to your doctor about screenings.

Even though the developments in the fight to end colon cancer are encouraging, they won’t make it any less devastating if you or a loved one is diagnosed with the disease. The hours and days after getting a diagnosis are often some of the most difficult. The big question most people ask themselves is: What happens next?

One of the best ways to feel like you’ve got some semblance of control over an uncontrollable situation is to have the right information and support to help you make informed decisions. In honor of Colorectal Cancer Awareness Month, we’ve got some advice on the first steps to take to help both patients and caregivers navigate their treatment journey.

Assemble your team

If you have colon cancer, you shouldn’t try to go it alone. It’s important to talk with family and friends and let them know how you’re feeling and what you need from them. You may find it easier to take in the reality of your diagnosis and treatment if you tell those closest to you.

In addition to the team who will support you emotionally, you’re going to be given a medical team. This will typically include an oncologist, a surgeon, and nurses. Make sure you’ve got a good rapport with this group because you’ll be seeing a lot of them. If you don’t feel like you and your doctor are a good fit, you might want to consider finding a different one.

Your first appointment will be overwhelming, and even if you go in armed with questions you’re probably not going to remember all of the information your doctor gives you. One way to make sure you don’t miss anything is to ask a family member or friend to go with you to your appointments to take notes that you can refer to later.

Talk to your doctor about biomarker testing

With a cancer diagnosis comes a lot of new and confusing vocabulary to learn, but one of the first things to familiarize yourself with is biomarker testing. Because no two cases of colon cancers are the same, doctors can look at indicators called biomarkers to help determine a course of treatment. These are genes, proteins, and other substances found in blood, tissue, or other body fluids that can offer information about cancer.

In some cases, biomarker testing can help doctors identify targeted treatments that will work for some patients and not others. Some biomarker testing, like the Oncotype DX Colon Recurrence Score Test, can determine the likelihood of the cancer coming back in certain patients once the patient has had surgery.

Within three weeks of Clementi’s diagnosis, doctors removed a 17-inch section of his colon, as well as two dozen lymph nodes. His cancer was stage II and had not spread beyond his colon. According to his Oncotype DX results, Clementi’s risk of recurrence was very low, which helped him to make the decision to opt out of chemotherapy and avoid its potentially harmful side effects. According to Clementi, these results gave him a bit of much-needed hope: “I was able to take a breath and say, OK, the bad news was cancer, but now things are falling into place here.”

“Peace of mind, for me, is everything,” he says. “I don’t want to wake up every single day, stressed out and nervous about this coming back, because it was terrifying to hear the diagnosis.”

While Clementi was diagnosed with early-stage colorectal cancer and benefitted from the Oncotype DX Colon Recurrence Score test, there are other types of biomarker tests for different situations. For patients with advanced or metastatic forms of colorectal cancer, the Oncotype MAP Pan-Cancer Tissue test provides comprehensive tumor profiling and can help physicians to recommend targeted therapies or clinical trials.

Take steps to preserve your family planning options

If you are still planning to start or add to your family, you should talk with your doctor about options for having biological children after cancer treatment.

These conversations have become more common as younger age groups have been experiencing the steepest rise in colorectal cancer rates over the last few decades — rates have been increasing in adults ages 20-39 since the mid-80s, and in adults ages 40-54 since the mid-1990s.

Treatment options for colorectal cancer — surgery, chemotherapy, and radiation — can significantly affect fertility. The risk of infertility can depend on the patient’s age, the type of surgery, and the type and dose of treatment. But, there are a number of steps you can take to preserve your family planning options before you begin treatment. These include freezing eggs, sperm, or embryos, as well as ways to shield reproductive organs from radiation.

Don’t neglect your mental health

Learning you have colon cancer can make you feel isolated and alone, and many patients say it can be hard to speak honestly about these feelings with their friends and family. If that’s the case, it may help to connect with other patients who are going through the same thing. Thanks to the internet, it’s never been easier to connect with others. Patient advocacy organizations like Colorectal Cancer Alliance (CCA), Fight CRC, and Colon Town offer a ton of resources to connect patients, survivors, and caregivers to talk about their shared experiences. These groups also offer resources like certified patient and family support navigators, as well as a wealth of information on treatments, side effects, and how to manage the disease.

It’s been a little over a decade since Clementi — now 55 and cancer-free — was diagnosed with colon cancer. He has lived to see his oldest son, now 28, follow in his footsteps to work in law enforcement, and he has encouraged several of his fellow police officers to get screened for colorectal cancer. He attributes his clean bill of health to his medical team, the love and support of his family, and access to the information that helped guide his decisions about treatment.