Use what you’ve learned and take charge of your health and life.
Anyone who has been through cancer treatment knows that there’s no “end.” Sure, you can ring a bell and high-five your doctors on that last day of treatment, but you’re in survivorship mode along with about 19 million others in the U.S. today. The threat of recurrence sits in the back of your mind, and you live with the nagging thought that it can be harder to keep beating the beast back into remission. Many studies show that up to 70 percent of cancer survivors report moderate to high levels of fear of their disease coming back, what’s also called “FCR” in the literature for fear of cancer recurrence. A study from the American Cancer Society finds that a year after being diagnosed, around two-thirds of people are concerned about their cancer’s return. After you pass the five-year mark, those concerns fade but rarely fully disappear.
Whether you’re in complete remission or partial remission — living with some sort of stable disease — those fears and uncertainties are real. The survivorship period cannot be underestimated. Your friends and family members may have largely moved on and gone back to their regular lives now that you’re done with aggressive treatment, but you’re left with unsettling feelings. The best way to manage those emotions is to stay on top of your game after your victory lap.
As a two-time cancer survivor myself, I’ve learned that the survivorship phase can be equally as important as the diagnosis and treatment phases. Here are the top three things to consider once you’ve reached this milestone.
1. Know Your Risk of Recurrence
It’s impossible to know for sure if or when your cancer will reemerge, but your doctor can tell you more about your personal risk based on your cancer’s type and stage, how you were treated, and your depth of response. Recurrence rates in general can vary wildly based on the type of cancer, with the highest recurrence rates among survivors of soft tissue sarcomas; glioblastoma (a type of brain cancer); and cancers of the bladder, ovaries, and pancreas. Some recurrent cancers might never totally go away or be cured. For repeat patients with those kinds of cancers, the disease becomes more like a chronic illness, such as diabetes or heart disease.
Know the best approaches to monitoring
When you ask your doctor about your risk of recurrence, be sure to ask about the most current and innovative approaches to monitoring your disease. New testing technologies, such as multi-cancer early detection tests (MCEDs) that only need a blood draw, are emerging every year. Make a screening plan together and stay on top of all the follow-up testing.
Know your metrics and follow your portal
Continue to log into and use your health portal. Know which key metrics, such as biomarkers, you should be following closely as you undergo routine check-ups and your doctor orders certain tests to keep tabs on your cancer risk. Stay vigilant about symptoms that can signal a problem, such as unexplained fatigue and pain, or unexplained changes in weight, bowel habits, vision, and so on. Don’t rely solely on those tests when they are due — there’s a lot you can do on your own to spot trouble as soon as possible.
Know the clinical trials
You also want to become familiar — if you’re not already — with clinical trials, which could become key to your survival if the cancer returns. Clinical trials test novel drugs and treatment protocols. Put simply, your next lifeline may come from one of many trials out there that match your needs. Fewer than one in twenty cancer patients enroll in cancer clinical trials, largely because they don’t know to about them, but they can be lifesaving.
2. Avoid Second Cancers
Knowing which screenings to get in survivorship relates not only to your recent cancer experience but also to potential new cancers. According to the American Society of Clinical Oncologists at Cancer.net, about one in six cancer patients are diagnosed with a new and different primary cancer years after treatment. Although the risk of developing a second cancer is low, second cancers are becoming more common as more people live long past their first bout of the disease.
In addition to your age, how you were treated for your first cancer weighs heavily into your future risk for developing other cancers. If you received radiation therapy, for example, it likely helped cure your cancer but could have simultaneously rendered you more susceptible to other forms of the disease. A classic example is radiation to the chest for treating Hodgkin’s lymphoma, but the treatment can make one more vulnerable to breast, lung, and thyroid cancer in the future. Past radiation exposure is also one of the risk factors for most kinds of blood cancers like leukemia. Similarly, some types of chemotherapies and targeted therapies have been linked with different kinds of second cancers.
The good news is that advances in cancer treatment allow doctors to increasingly limit the threat of second cancers as protocols reduce exposures and any long-term adverse effects. Don’t forget that certain lifestyle shifts can minimize your risk of developing a second cancer. These include not smoking, staying physically active and fit, eating a nutrient-dense diet, and getting restful sleep.
3. Take Time to Reflect
Everyone’s journey is different. Once you’ve reached the survivorship period, it’s time to reassess your wants and needs for your life now and the future. How is it all going — really? How have your relationships changed? Can they be strengthened, or do you need to move on and leave a few behind?
Think about your needs now
First, think about your physical, emotional, and financial needs now. There’s no doubt you’re looking at your body in a new way. You may be seeing the scars from surgery or feeling fatigue from chemotherapy or general pain from the experience. What can you do to start building yourself back up? See if your hospital offers or recommends resources such as wellness programs you can do alone or with others. This can help get you back to “normal” more quickly. Also, ask about resources for emotional needs — from support groups to counseling to medication. And for addressing financial matters, which is a real thing for cancer patients who may have racked up medical debt, reach out to the billing office at your treatment center and your doctors’ offices. Start to understand the types of payment plans they offer and ask how to dispute bills that weren’t covered by your insurance company and/or Medicare and Medicaid. It can be exhausting but it’s worth it. The billing offices in the hospitals know how to help you fight this battle, so work with them.
Consider what you want now
Next, think about your wants in the post-treatment world. How are they different from before cancer? Would you change the balance between work and home? Would you change how you want to spend your time or who you want to spend it with? Pull out a piece of paper or open a new file on your computer and write out what matters now. Be kind to yourself knowing this is a process that takes time and distance from the acute phase of the cancer journey.
Take stock of who matters most now
Finally, think about your relationships. Patients powering through treatment, especially if it continues for an extended time and takes its inevitable detours, can begin to feel like “too much,” a burden dragging those they love down. It can fracture precious relationships over time. It’s not unusual to “narrow the circle” of those close to you to those who “get it.” Be honest with yourself and others. Did someone let you down because they couldn’t help? Did others make huge sacrifices that perhaps you took for granted? Was there anyone who needed you and you didn’t have the strength to support them? Were your children struggling without telling you? Whether you answered yes or no to any or all of these, remember it’s OK. It’s not too late. Talk to your people. Don’t just sweep important conversations under the rug. Communication is supposed to be hard in families, let alone families managing illness. Be courageous. Speak up. Break the silence.
The cancer journey is long but can be well-managed with the right practical tools and team players on your medical and personal support team. Leverage the power of the survivorship phase and your future health will thank you.
To follow Kathy’s cancer journey and learn her insights on how to cope with a diagnosis, read Fatal to Fearless.
