Sean Swarner doesn’t remember being told he had terminal cancer, at least not the first time around.
He was a young teenager when he was diagnosed with Hodgkin lymphoma, a rare cancer that limits the body’s ability to fight infection. His parents broke the news, telling him he had Hodgkin’s disease, but they left out the word “cancer.” A few months prior to his diagnosis, his step-grandmother had died from cancer and his parents didn’t want to scare him.
“Being a nosy 13-year-old, I did some research at the library and found out that it meant cancer,” Swarner, now 44, told HuffPost.
“I think it’s worse on the parents because they’ll do anything to protect their child,” he added. “And there’s nothing you can do to take the cancer away. I can’t say how many times I’ve talked to my mom or my dad and they say, ‘We wish we could have taken the cancer ourselves.’”
After aggressive treatment, the cancer went into remission for nearly 20 months. But during a routine checkup, a second, unrelated cancer was found called Askin’s sarcoma. He was given 14 days to live.
Swarner chose to try treatment and underwent surgery, chemotherapy and radiation treatments. The second time around was much worse, Swarner said, since he had already undergone chemotherapy to treat the first cancer. “[The doctors] were actually afraid that the chemo was going to kill me,” he explained.
The treatment was eventually successful and his cancer has been in remission for more than 25 years, but he still remembers the overwhelming stress that came with his diagnosis. Now, he’s focused on helping the more than 1.9 million people who will be diagnosed with cancer next year, as well as the 22.9 million others who have already been diagnosed.
If you count yourself among them, it’s important to know that you don’t have to face cancer alone. Here are a few steps that can help you manage anxiety and find resources after you’ve received news from your doctor:
Acknowledge your feelings
Cancer can affect your mental health just as much as your physical health. In the beginning, it’s common to feel overwhelmed, angry and afraid, according to the National Cancer Institute.
“People are suddenly seeing their life is over,” said David Spiegel, associate chair of psychiatry and behavioral sciences and director of the Center on Stress and Health at Stanford University School of Medicine. “And that’s usually not the case, but it feels that way at first.”
Cancer isn’t perceived the same way as other diseases, Spiegel explained. When a problem is localized to a specific organ, such as your liver, heart or lung, you feel as though it’s letting you down, he explained. With cancer, many people see part of their body as the enemy.
“One of my patients said she felt like she had little terrorists inside her body. You have to deal with the sense of your body not just failing, but betraying you,” Spiegel said.
When you’re first diagnosed with cancer, he added, you also need to learn a lot in a hurry and then make decisions. But, during that time, it’s also important to take time to acknowledge your feelings ― without trying to suppress them.
“That means facing rather than running and hiding from your anxiety and taking the time to really deal with it,” Spiegel said. “And it’s uncomfortable and unpleasant, but you’ll feel better if you face it and deal with it than if you don’t.”
The more you learn about your possible course of action to fight the disease, the better you’ll feel, he added.
Try to avoid making assumptions about treatment or outcomes
It’s common for people to have preconceived notions about cancer and cancer treatment, based on the experiences of others.
“They think it’s automatically what their neighbor down the street had or their friend’s cousin or their co-worker’s daughter — and, of course, it never is,” said Ruth Oratz, a medical oncologist at NYU Langone who treats people in all stages of breast cancer.
Try to come into your appointments with an open mind, Oratz added. And whatever you do, stay off Google if you know it’s going to cause you extra distress.
Bring someone with you to important appointments
It’s important for patients to listen carefully to understand their diagnosis and prognosis, Oratz said. But of course, that can be difficult right after you get terrifying news.
“It’s always scary to hear the word ‘cancer’ or to hear the word ‘malignancy,’” she explained. “But not all cancer is the same and the expectation of outcome is not the same for everyone’s diagnosis.”
Both Spiegel and Oratz recommend bringing a loved one along to any appointments, especially when you get the results back from a biopsy. That person can provide emotional support, along with a second set of ears.
“There have been studies shown that when people hear a difficult diagnosis or they hear bad news, after about a minute, the patient completely tunes out and really doesn’t hear too much more about what the doctor is saying,” Oratz said.
When delivering the diagnosis herself, Oratz said she probably has to repeat herself five or six times until patients actually hear her, as a result of their emotional state. That’s why she suggests that patients bring someone with them who is both smart and calm to make sure that important information from the medical team doesn’t get missed.
Find a physician you trust
There are a number of factors to consider when choosing a doctor or treatment center, such as accepted insurance plans and distance from your home. And, most importantly, you also want to find a doctor and cancer center that you feel comfortable with and trust.
“You have to trust the person who is taking care of you,” Oratz said. “You have to like them. You have to have good chemistry and that has to go in both directions.”
Oratz suggested looking into treatment from a National Cancer Institute-designated comprehensive cancer center. There are 49 comprehensive cancer centers in total, located throughout the country. In addition to being handpicked by the NCI, they also offer the convenience of having one team of experts under the same roof.
But that might not be possible for everyone. “That’s going to offer the most advanced, state-of-the-art options, including clinical trials and multidisciplinary care, but not everyone has access to that,” she said. She also noted that — for certain standard treatments — a comprehensive care center may not be necessary.
If a comprehensive cancer center isn’t an option, look for a treatment center in an academic setting or at a practice where the doctors stay up-to-date on cancer treatment options, Oratz suggested. It’s usually a good sign if the doctor attends conferences regularly and is part of a regional or national cancer provider consortium (group of companies), which typically provides access to clinical trials.
Break up your next moves into small parts
When you’re first diagnosed, you’re required to make a lot of big decisions in a seemingly short period of time in terms of the next steps for treatment. It can quickly become overwhelming, Oratz said. That’s why she suggested breaking things down into smaller, more manageable steps and prioritizing the things you want to focus on.
“People sometimes get into this whirlwind of running around for 20 different opinions and go on information overload,” Oratz said. “I think sometimes just taking a breath is also good, unless it’s an absolute emergency that something has to be done right away, which is not so common.”
If you’re deciding between two different treatment options, second opinions can sometimes be helpful to break down the pros and cons, she added. If the second doctor recommends the same treatment as the first, it can also help provide reassurance to patients.
Leverage the free resources available to you
Sometimes, it helps to talk to someone who has experienced the same type of cancer, too. Try finding a system like the Cancer Hope Network, which offers free one-on-one emotional support to adults living with cancer and caregivers. The organization also matches patients with volunteers based on a shared diagnosis or a similar treatment protocol.
“For patients struggling to make a decision regarding their treatment options, we’ll connect them with support volunteers who have gone through each one, helping them weigh the pros and cons of each,” said Sarah Miretti Cassidy, director of external affairs at the Cancer Hope Network.
Most of the support visits happen by phone. Some matches may only talk once, while others choose to remain in touch throughout their treatment and beyond. “There is power in knowing you’re not the first to face this obstacle,” Miretti Cassidy said.
In addition to emotional support, you may also need physical support, such as transportation. The American Cancer Society offers free rides to and from cancer-related appointments through its Road to Recovery program. Based on eligibility and availability, patients get matched with volunteer drivers, transportation providers working with the ACS or other local resources.
Visualize something you want to do in spite of cancer
A cancer diagnosis can take you on a rollercoaster of emotions. J. Michael Shipman, a 23-year-old from Houston, recalled thinking, “Why me?” when he was first diagnosed with testicular cancer at age 21. Two days later, he had surgery to have the tumor removed, followed by chemotherapy the next week at MD Anderson Cancer Center in Houston.
Nearly one month after Shipman finished chemotherapy, he recalls watching SportsCenter on ESPN and seeing a segment on Swarner, the two-time terminal cancer survivor, who had gone to the North Pole with a flag signed by thousands of cancer survivors. “I was immediately inspired,” Shipman said.
Shipman found Swarner online and sent him an email, telling Swarner about his own cancer story and how he wanted to go on a trip to celebrate. Swarner replied back, “Why don’t we plan it?” The pair ended up hiking Mount Kilimanjaro, the world’s tallest freestanding mountain in Tanzania, East Africa.
“That was one of the hardest things I’ve done,” Shipman said of the climb. “[Swarner] would always just tell me, ‘Visualize yourself going to the top of Kilimanjaro. Imagine yourself summiting that mountain.’”
He’s keeping that advice in mind as he approaches his two-year check-up appointment, where he’ll find out if the cancer has been cleared. “That’s kind of what I’m doing now. I’m visualizing sitting in the doctor’s office in a month and her telling me that, ‘You’re cancer-free.’”
“Living With” is a guide to navigating conditions that affect your mind and body. Each month, HuffPost Life will tackle very real issues people live with by offering different stories, advice and ways to connect with others who understand what it’s like. In March, we’re covering cancer. Got an experience you’d like to share? Email firstname.lastname@example.org.