As a patient moves from treatment to survivorship, the fear of cancer recurrence may overshadow the ability for them to recognize how much they have endured, but support is available to hopefully lessen the burden.
Patients with cancer are often fearful upon receiving a diagnosis and throughout treatment, but sometimes fear can carry over into the survivorship portion of a patient’s journey, which is related to the fear of cancer recurrence.
“The fear of recurrence is common because regardless of what your diagnosis was or what your background is, it's something that is across all different sexes, ages, economic backgrounds, disease sites, whatever you may have, it is a common side effect that every cancer survivor encounters at one point in survivorship,” said Nicole Kulasa, a survivorship nurse navigator at Allegheny Health Network Cancer Institute in Pittsburgh, Pennsylvania, in an interview with CURE®.
Kulasa and her colleagues started a survivorship program at Allegheny Health Network Cancer Institute in 2020, which included a Survivorship 101 class for patients that completed therapy. Through this class, patients may learn more about resources to help them acclimate to the “new normal” after cancer treatment and through survivorship. One of the many topics addressed in this class and through this clinic is the fear of recurrence, which Kulasa said is often mentioned by patients.
“Patients that I’ve talked to, sometimes (the fear of recurrence) can be pretty profound that it almost puts them in a daily panic attack or freezes them from moving on,” Kulasa said. “Yes, treatment is over, but what if (the cancer) comes back? Worrying about the fear of the unknown instead of focusing on present day and what’s going on, constantly fearing about what can come in the future, that could be the extreme.”
One of the patients from the survivorship clinic that has voiced a similar fear of recurrence is Patty Salerno, who lives in South Fayette Township, Pennsylvania, with her husband, Gary. She received a diagnosis of stage 1 bile duct cancer in February 2021. Before her diagnosis, Salerno worked in several roles for the Pittsburgh Pirates for 31 years, most recently as the senior vice president of community affairs, from which she retired in July 2020 because of the COVID-19 pandemic.
Salerno and her husband went to their primary care provider for routine physicals and bloodwork in February 2021, which indicated that Salerno had high liver levels. After a few subsequent tests including an ultrasound, MRI and a liver biopsy, it was confirmed that she had bile duct cancer.
“In all honesty, the not-knowing part was the hardest part,” Salerno said. “Once we had a diagnosis and once we had a treatment plan, then it was … a little bit easier, but the not-knowing part is very scary.”
Salerno’s treatment plan included six cycles of chemotherapy, which prepared her for surgery in September 2021 to remove half of her liver. After surgery, Salerno was treated with 27 days of radiation since her margins were so close after surgery and the liver board wanted to play it safe. Treatment concluded after two more cycles of chemotherapy on February 10, 2022. Since then, Salerno has had scans performed in the beginning of March, which are “so far, so good,” she said, and she goes back to her oncologist in three months.
“Right now, the hardest question to ask my oncologist when I was done with (treatment) was, do you think this (cancer) is going to come back,” Salerno said.
The fear of cancer recurrence may be triggered by different factors, Kulasa said.
“It could be maybe a new cough, pain, ache or somethingthat triggers (this fear),” she explained. “Is the cancer coming back? Or (patients) could be doing their normal daily activities, going in the grocery store, they're looking over to People magazine and they see the local celebrity, a famous person diagnosed with cancer. It's external things that can trigger that fear. Sometimes that fear can affect their lives, … impacting their relationships, how they're talking to people or their daily activities, it can make them not active.”
This fear of recurrence may also stem from the unknown after a patient undergoes cancer treatment.
“When you’re going through treatment, it’s like a full-time job,” Salerno said. “When we walk into the cancer institute, it may sound odd to you, but we feel very safe when we walk in there because people know us and you’re getting checked, whether it’s every week or every other week, and you’re getting all your bloodwork done. Now when you’re kind of out on your own again, it’s like, wow, what do I do now?”
Salerno said she asked her oncologists whether they think her cancer will come back, especially since it said her cancer treatment was curative. She was told “we don’t lie to our patients.” After a discussion about potential recurrence, it was agreed upon by Salerno and her care team that they can be “cautiously optimistic” that the cancer may not return.
“I can’t just jump into the pool of being cancer free, so I’m gradually stepping into the water,” Salerno said.
Salerno added that she now feels anxious with every doctor’s appointment she attends even if it’s not directly related to her bile duct cancer. For example, she recently went for a colonoscopy because she was due for one, and the care team noted that she had a fast heart rate. Salerno credits that to the fear of wondering what doctors will find and what will happen next as a result of any doctor’s appointment. Salerno said that one thing she learned from Kulasa’s survivorship class is that there are some things that she can control and things she cannot.
“I can control getting all my screenings. That I can do,” Salerno said. “Trying to be as healthy as I can, trying to move, trying to eat well and have a good attitude, those are things I can control. But there are things that I can’t control. I can’t necessarily control what’s going on inside of me.”
Although it’s difficult for Salerno to fully accept that she is cancer free for now, she said she’s surrounded by a wonderful support system including Gary, her family and friends, all of whom try to keep her in the moment and allow her to be grateful of the good in her life now.
Surrounding Oneself With Supportive People
A strong support system, whether it be a patient’s family, friends or support groups through cancer centers, may help patients conquer or potentially reduce their fear of recurrence. It all depends on what the patient feels most comfortable with.
“Some people will say, ‘I've carried on with my life, but sometimes that fear will trigger (and) it will come up at some point.’ It can be very scary for patients,” Kulasa said. “Sometimes, it's hard for (patients) to express themselves if they talk to their family members who may be doing better. ‘We got through cancer treatment together. It's over, (we’re) looking forward to a happy, healthy future.’ Bringing up that fear to their loved ones can sometimes they feel like a reminder or scare their loved ones about what could happen. That's whysupport groups are so good is because these survivors can get together and they can have that commonality that I'm going through this too, I feel like I'm in a safe spot that I can express that without feeling like I might be making someone nervous, or I'm making them fearful.”
Speaking with others who underwent a similar journey can bring a sense of comfort.
“I have a very, very close friend who has metastatic breast cancer,” Salerno said. “Being able to talk with someone that has gone through or is going through the same thing that you have, it’s a different conversation. That’s some of the feedback that I gave back to Nicole (Kulasa) about survivorship: we like talking to one another because we know what it feels like to have a port. We know what it feels like to have radiation. I know that we all know what that fear is. I think trying to connect with people that are also survivors is important. I haven’t quite gotten there yet, but I think that’s going to be important.”
Kulasa suggested some other ways a patient and their families can potentially alleviate the fear of recurrence or make it less of a focus on their lives. These include keeping up with screening appointments, reporting any symptoms that may concern a patient, journaling and taking care of oneself by eating right, exercising and reducing stress.
Most importantly, Kulasa advises patients to recognize what they went through no matter how minimal or life-changing a patient may view their cancer journey.
“The most important thing is for people to realize that cancer does have an effect on your life and your loved ones’ life,” Kulasa said. “Maybe you caught (the cancer) super early, you had a very brief treatment and then you’re in recover, or you went through a very long and treacherous treatment. Either way, cancer can have a huge impact on your life. Give yourself grace in knowing that what your body’s been through, and how strong and resilient you and your family are.”
For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.