Before Scott Capozza, PT MS, went to his college roommate’s wedding six weeks after finishing his cancer treatment, he’d been told a lot about how his health would be affected. He knew about the loss of white blood cells, he knew he was going to lose his hair, and he knew the nausea would come. However, his body had a different surprise in store.
“We’re putting our tuxes on, we’re getting ready for his wedding,” starts Capozza. “And the rest of the guys are having a conversation with me, and the only way that I could hear them was because I could look in my reflection, look back at their reflection, and see that their mouths were moving. That they were trying to talk to me.”
It would be more than a decade before he would go and get an updated hearing test, confirming that his treatment had caused significant hearing loss along with pulmonary fibrosis, lung scarring that meant he couldn’t run for recreation like he used to. Now working at Smilow Cancer Hospital’s Survivorship Clinic as a physiotherapist who is board-certified in oncology, he uses that knowledge to support his patients.
No oncology appointment in the world can fit every possible symptom for every possible person, but those who spoke to us for this story highlighted six symptoms that still fly under the radar. Here are some of their stories.
The Mental Health Toll
“There’s a period of grief that happens where you have to mourn the person that you were and learn to love the person that you are,” Julie Dunnigan, CEO of Cancer Support Community Arizona, tells Verywell Mind.
Cancer Support Community Arizona is a non-profit that provides free support services to those affected by cancer, including survivors, families, and caregivers. When it comes to how mental health can shape survivors—in a situation where many get diagnosed with conditions like anxiety, depression, and post-traumatic stress disorder—it can be reconciling how you feel with how your family feels that can be a difficult roadblock.
“Even if you have really supportive family at home, there’s this thing where once your last appointment is done and you get to ring that bell, whether it’s the chemo bell or the radiation bell, it feels, as a survivor, like your family kind of scrubs their hands and say, ‘Oh, cancer is done, yay, we beat it. We’re done with it, right?’ But as a survivor, you’re really never done with cancer.”
On “Scanxiety”
Part of this is what clinicians and other professionals call scanxiety, the significant impact that knowing a follow-up is looming can bring upon a survivor. For many, it can feel like they’re expected to go back to how they were before, before not just a life-threatening ordeal, but one that can have dire financial consequences.
For Dunnigan, a cancer survivor herself, her anxiety spiked once she shifted from being on a treatment plan that required being at the hospital five days a week to only being seen every few months.
“I was seeing the doctor or the nurse, and then at my last appointment, they said, ‘OK, well, we won’t need to see you for six months,” she explains. “And that was so stressful for me, because I was getting seen by a medical professional every single day, and now I felt like they were just dropping me like a hot potato.”
In Dunnigan’s line of work, she finds that having sustained mental health support for processing the emotions that come with cancer treatment—and holding space for caregivers and loved ones to work on their own experiences as well—is of tremendous benefit
…even if a doctor tells you this and this and this might happen, it’s not the same as talking to someone who’s lived it.
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JULIE DUNNIGAN, CEO OF CANCER SUPPORT COMMUNITY ARIZONA
Self-perception Shifts
Capozza, whose self-image shifted after he could no longer run, says that part of his work as a physical therapist, specializing in oncology, is to share his experiences. It helps to know firsthand what some of the common challenges are—such as stability and energy—and to help people find their way back to the things they loved to do before their diagnosis. For him, that means biking instead of running and putting the focus he used to have on marathons into helping his kid run at their own events.
“I don’t run anymore, and I think partly because I physically can’t run, but also mentally, I know what I was at one point, and I’m not that now,” says Capozza.
Chemo Brain
Susanna F. Greer, PhD, chief scientific officer at the V Foundation, says that one thing patients tell her all the time is that they have “chemo brain.”
“Survivors can experience issues with memory, with concentration, and I think you might just call that mental clarity for a long time after treatment,” says Greer. “I think it’s real, it’s biological. It’s not in a patient’s head, and it can impact a lot of things about our lives: our jobs, our relationships. And I think one of the things that I hear a lot is [about] self-esteem.”
This is another version of what some in disability communities would call brain fog, a symptom of chronic fatigue that can swallow up your ability to do even simple tasks. Greer calls it part of the “invisible symptoms” that come with the cancer experience.
Sleep Disturbances and Fatigue
We know that sleep disturbances can be really common during treatment. They are also equally common during survivorship. This can be because of stress, because your life has changed, hormonal changes, pain, medications that you’re on, etc. Fatigue isn’t just a symptom; it’s a barrier to healing.
One possible way to tackle fatigue, though it may sound counterintuitive, is exercise. Kathryn Hudson, MD, Director of Survivorship at Texas Oncology, says that exercise can be one way to help reduce your level of fatigue and improve your sleep if you’re a cancer survivor. However, if that isn’t helping, or if your fatigue levels are proving difficult to live with, she says it’s important to inform your doctor and seek additional support.
“If you sit down with your cancer physician or provider and really try to nail down what’s going on and [are] not making much progress, it’s always good to see a sleep therapist,” Hudson explains. “Physical therapy can help fatigue as well. So, don’t be afraid to reach out to other specialists who could help with these symptoms so that you can have a better quality of life.”
The (Gender) Identity Crisis
Cancer can create a seismic shift when it impacts a person’s sexual health, fertility, and even a sense of their own gender identity. Dunnigan says it’s something she sees regularly with those she supports. For some, the removal of breast tissue can change a person’s sense of femininity. For others, erectile dysfunction can cause a change in self-perception, and treatment can cause severe mental health distress if it means the person can no longer have their own biological children.
“If side effects have affected your sexual desire or your erectile function…all of those changes really mean that you’re a different person coming out of it than you were going in,” says Dunnigan. “And so how do you learn to love the new person that you are with these limitations or this newness?”
Fertility and Sexual Health Challenges
Hudson says that a large part of why fertility and sexual health are less discussed than other aspects of cancer recovery is that patients feel hesitant to bring it up, and clinicians tend to be focused on other aspects of treatment.
“There’s plenty of research that shows oncologists don’t ask about fertility as often as they should, and I think that’s often because it can get overshadowed by the diagnosis and everything that needs to happen to start treatment,” Hudson adds.
However, there are areas where we’re garnering more information. Hudson points to recent research that has found that vaginal estrogen—a common treatment for dryness and side effects that can cause painful sex—is not a risk factor for cancer recurrence. Previously, there was concern that this could be the case.
Bottom Line
Finding out you have cancer is an experience no one wishes to have. Still, despite how common the disease is, Greer sees these underdiscussed symptoms as part of the all-too-common discombobulation that comes with the diagnosis.
“No one expects to get that phone call. So we’re always caught off guard, thrown into a world of vocabulary we don’t understand, where there seems to be a necessity to make decisions very quickly, and so the focus is often on that immediacy and not about what happens to me. The stress and anxiety of being a cancer survivor is oftentimes worse than being a cancer patient, because humans are made for action.”
The stress and anxiety of being a cancer survivor is oftentimes worse than being a cancer patient, because humans are made for action.
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SUSANNA F. GREER, PHD
For those who spoke to Verywell Mind for this story, the hope is that the more people can talk about their experiences, bring their concerns to their healthcare professionals, and find community, the better off everyone will be.
