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The beginning of August can signal the final days of summer, college move-in preparations, and squeezing in a final family vacation. But on August 1, 2023, it signaled something altogether different for Mary Beth Brault. Her life shifted. It was the day that she was diagnosed with PH+ B-cell acute lymphoblastic leukemia.

For the then-55-year-old, it was “a long, complex name for an aggressive blood cancer that hit like a freight train,” she says. “It shattered everything and rocked the foundation of our world. At the beginning of July, I was working, traveling, and going to concerts with my kids. By July 31, I could barely walk into the emergency room. Overnight, my whole life changed. But the worst moment—far and away—was telling my children. That broke me.”

According to the National Cancer Institute, approximately two million people will be diagnosed with cancer in 2025. Most people know that the disease takes a physical toll on the body, including fatigue, pain, nausea, and vomiting. But they may not factor in the mental and emotional toll of the disease.

“Being diagnosed with cancer can bring on a wide range of strong emotions in the period after diagnosis. Immediate reactions can vary – but many people feel shocked or numb, finding it hard to believe or fully process the news,” explains Michael A. Hoyt, PhD, professor and chair of Population Health & Disease Prevention of UC Irvine’s Joe C. Wen School of Population & Public Health.

From anger to anxiety, guilt to determination, a cancer diagnosis takes a toll on the person with the disease, as well as their family and friends.

Initial Reactions and Emotions

Brian Koffman, MDCM, is the co-founder, chief medical officer, and EVP of CLL Society Inc., an organization that addresses the needs of leukemia and lymphoma patients. His connection is intensely personal.

“I was diagnosed with chronic lymphocytic leukemia (CLL) in 2005,” he says. “My cancer diagnosis was a complete shock and raised disbelief. I was feeling well and was surprised when the leukemia was discovered on routine blood work,” he notes. “It was a gut punch.”

“Cancer is a thief, upending your sense of safety in your own body and your plans and hopes for the future. Depending on the type of treatment you need, you may have to give up the routine and activities you built your life around. It can feel like you’ve lost control over your life as you pivot your attention to battling cancer and coping with the uncertainty it brings,” says Hannah Holmes, PhD, clinical health psychologist at Holmes Psychology.

Forging an unknown path can also lead to unexpected emotions. These include:

• Stress and anxiety. “Fear and anxiety are also very common — people often worry about what will happen next, how they’ll get through treatment, and what it means for their future,” says
  Dr. Hoyt.
• Depression and sadness. One in four cancer patients struggle with depression. Unfortunately,
  only 5% of those struggling see a mental health professional, according to the National
  Cancer Institute.
• Anger and denial. “Some people feel angry — at the situation, the healthcare system, or just at the unfairness of it all. Others may go into denial, telling themselves it can’t be true, as a way to cope with the overwhelming news,” Dr. Hoyt notes.
• Guilt. People can experience guilt if they feel like the cancer is their fault, or they feel bad about burdening their family and friends.

Dealing With Misconceptions

You may also find yourself dealing with common misconceptions others have about walking through the cancer journey, such as:

• You shouldn’t be secluded. “The biggest misconception in my case was isolation—and why it’s necessary,” states Brault. “Once chemo started and my immune system was gone, I was essentially on lockdown. So was my husband. One random virus could [have] killed me.”
• Cancer patients need additional advice. “Another common issue: unsolicited advice. ‘Drink green juice.’ ‘Avoid sugar.’ ‘Try this herb.’ Let’s be honest — by the time you’re diagnosed, the ship has sailed. And I hate to state the obvious, but the chemo they are dumping into my body is exponentially more toxic than any cookie. People mean well, but it’s exhausting,” Brault says.
• All cancers behave the same way. “[It’s] a common misconception that a particular cancer diagnosis is predictable in its behavior and prognosis. There are always ‘outliers’ who beat the odds and live far beyond their ‘predicted’ life expectancy,” says Dr. Koffman.

Finding Hope and Joy

While research doesn’t necessarily show there is a correlation between a positive attitude and cancer treatment outcomes, for some, it can make a difference in the journey.

“What I love about the focus on hope involves taking a step back and asking ourselves what hope really is… and the way I have considered hope in my own work is to think of hope as a possessing the belief, skills, and actions to identify and pursue the things you value most in life,” says Dr. Hoyt.

Hope can help shift focus – from the difficulty and pain of cancer to things in life that bring joy or pleasure. And research does show that positive thinking builds resiliency and combats the stress’ inflammatory process. And joy can be found in regular, everyday activities, or things that give you a new sense of purpose.

Coping Mechanisms and Support Systems

Whether it’s a group of people walking through the same journey, friends, or a spouse, a support system is a critical part of your mental and emotional health when dealing with cancer. In addition to having people who care about you and help you, it’s beneficial to have other methods of coping.

Ideas include:

• Seeking out professional counseling. A mental health professional who is trained to help you navigate the emotions that come with a cancer diagnosis can offer critical support.
• Journaling. Getting your feelings out on paper can be a cathartic experience.
• Establish boundaries. “Saying no to energy-drainers and the people that never gave support [helps to protect] my peace,” Brault notes.
• Take part in hobbies you enjoy.
• Be patient with yourself. Learn to rest when you need it.
• Check out cancer support groups: Finding like-minded people is a great way to relate through lived experience, get guidance, and have a place to talk with others who understand the process.
• Prioritize rest. it is more important than ever to take care of yourself.
• Find ways to reduce stress. Techniques that involve nervous system regulation and mindfulness may be helpful.
• Practice vulnerability. Learn to express emotions with people who know how to listen without attempting to ‘fix’ you. Bottling up emotions can increase feelings of stress, anxiety, and depression.

People think they know what they will do when challenges strike. But often, you don’t truly know until you are experiencing it. Give yourself grace as you walk through your cancer journey, and care for yourself physically, emotionally, and mentally.

Mental health is complicated and impacted by many factors, including genetics, environment, support systems, and more. It is never shameful to need support for your mental health, and anyone can struggle. In fact, in certain circumstances, it is almost expected to need support.

It’s completely understandable to experience complex emotions following a cancer diagnosis, and many people work with therapists while undergoing cancer treatment to treat psychological symptoms brought on by the stress of diagnosis and treatment.

Kristi Miller, LPC-MH, has been in remission from cancer for 11 years and was kind enough to share her expertise as both a mental health professional and a cancer survivor. While she emphasized that everyone’s journey is unique and different, she shared her experience and ways that a therapist can help you cope if you or a loved one has been diagnosed with cancer.

The Role of a Therapist in Cancer Care

A major medical issue like cancer treatment has significant, lingering impacts on mental health, even after the patient is in remission. While a variety of factors impact how an individual will respond psychologically, it is clear that a cancer diagnosis is a major life event that negatively impacts mental health. You might be scared that they will not survive or will never fully recover.

You might feel significant stress, or you could struggle to cope with feeling physically sick as a result of your illness or the treatment. You might feel angry. A therapist can provide a safe space to process all of these things and attend to your mental health during this time.

Miller shares that it is important for the therapist to “meet the person where they are” and support them in whatever way is best for that individual.

A therapist can be part of the individual’s treatment team, collaborating with other providers. When Miller got her diagnosis, her therapist consulted with an oncologist about her care, which helped considerably. She shares that she received her diagnosis shortly after losing a family member and had thoughts of refusing treatment altogether. The oncologist helped the therapist connect her reluctance to start treatment to a depressive and bereavement episode rather than her true desires.

Therapeutic Approaches to Coping with Cancer

While the primary predictor of whether therapy will be effective is the relationship between the therapist and client, there are specific approaches and interventions that research has shown to be beneficial. Of course, no approach is a miracle fix, and you might find that something with a strong evidence base simply is not a good fit for you. These orientations can be beneficial:

• Cognitive-behavioral therapy (CBT) is an approach to mental health care that involves connecting how thoughts, emotions, and behaviors interact to identify how negative and unhelpful thoughts influence our mental health. It has strong evidence backing for managing symptoms of depression and anxiety, which many cancer patients experience.
• Mindfulness-based therapy: Mindfulness therapy helps reduce stress, anxiety, and other emotions that come up as a result of a cancer diagnosis by staying in the present. This can be beneficial as it helps people from jumping into the future about worst-case scenarios.
• Dialectical behavioral therapy (DBT) is a therapy designed to increase distress tolerance for big, unpleasant emotions, such as those that can arise following a cancer diagnosis. One component of DBT is radical acceptance, or fully embracing and accepting reality regardless of how we feel about it.
• Acceptance and commitment therapy (ACT). ACT focuses on accepting challenging thoughts and feelings without trying to control or change them.

Support for Different Stages of the Journey

Regardless of where you are in your journey, a therapist can help you cope with the emotional and psychological impact of cancer. Whether you were just diagnosed, are in remission, or are nearing the end of life, you deserve the mental health support that you need.

At the start of her cancer journey, Miller shared that she really needed space to be upset: “There was a lot of pressure for me to feel like I needed to be strong and brave, and be a fighter and a warrior and all that kind of thing, and really I just wanted to fall apart.”

Miller noted that even members of her treatment team took this approach, telling her, “You’re fine, you don’t need to even think about that,” which did not help her and made things worse when her cancer turned out to be more advanced than they initially thought. This attitude made her feel like “a loser” for not being optimistic enough: ”I wasn’t demonstrating that attitude because I didn’t feel it!”

Even if you are fully in remission, you might feel anxious that the cancer could return or fear another medical issue coming up in the future. A therapist can help you manage these emotions.

If you are near the end of life, a therapist who specializes in end-of-life care can help you come to terms with your mortality and make plans for a peaceful death. Death doulas also offer support to those who are near the end of their lives.

Special Considerations

Anyone going through cancer is at risk for depression, anxiety, and other mental health concerns from the stress and trauma of this illness. However, the specific needs might vary based on cultural considerations, personal values, and other factors. You deserve a treatment team that gets you and your needs and understands your background.

The mental health impact of cancer not only affects the patient. If a loved one has cancer, you still deserve support as you go through this process with them. Caregivers often benefit from their own mental health treatment. Parents raising a child who has cancer often need to work through their own mental health to show up for their child.

Additional Support Resources

If you are looking for an individual therapist, TherapyDen’s directory lets you filter providers who specialize in supporting people with cancer. CancerCare is an organization that helps those experiencing cancer connect with qualified mental health professionals.

The American Cancer Society offers online and location-specific education and support services for those with cancer and their loved ones in every phase of the medical journey. Similarly, the Cancer Support Community can connect you with local resources, education, and online community support. In-person cancer support groups can also help you feel less alone by meeting others who are experiencing a similar journey.

Key Takeaways

• Going through a cancer diagnosis and treatment may be one of the most stressful things a person can experience, and your mental health is just as important as your medical care during this time.
• A therapist can help you process your diagnosis, work through mental health issues that arise or worsen during your treatment, and simply create space for you to feel your feelings.
• There is no one way to cope with a cancer diagnosis, and it is not a journey that has shortcuts. Miller shares, “You can come out better at the end, but it’s a wall of dirt and a long process.” “I just want to stress that everybody’s journey is different, so if you don’t have that stronger-than attitude, you don’t have to feel guilty,” she adds.

When you’re going through cancer treatment, so many people want to help. They mean well. They send texts asking, “How are you?” and ask about specifics of your treatment; they might even send ice cream through the mail.

Sometimes those things can be helpful. Sometimes not.

It’s hard to know if you haven’t experienced it yourself, but unfortunately, we have (Brooks Bell was diagnosed with Stage III colon cancer when she was 38, Sarah Beran with Stage IV when she was 34). We both went through surgery and several rounds of chemotherapy to treat our cancer, a treatment that’s notorious for being both physically and emotionally exhausting.

For both of us, it was a defining time in our lives, one of profound insight, but also fear and pain. There were moments of connection and meaning, but also times when the whole thing felt unbearable.

What Helped in Hard Times

Here are a few things that truly lifted us up throughout our journey.

Sensory Comfort and Finding Peace in Nature

For Sarah, the two days following chemo were always the hardest, but just taking a shower or bath helped. “Something about the warm water felt cleansing. It made me feel human again.” 

Brooks created what she now realizes was a “forest bathing” ritual. Before each chemo infusion, she’d go into a special place in the woods, alone—no phone, no music, just herself and the power of the surrounding nature. “I’d walk slowly, count the leaves, listen to the wind,” she says. “I felt like the forest came alive to hold me. I’d go in and sit in the middle of a creek and feel grounded, like I had a secret source of strength.

Sarah also found peace in nature—she and her kids would draw with sidewalk chalk, go on walks, or just sit outside. “Being with them was everything. I couldn’t always join in the activity, which was painful, but just hearing their voices helped me remember what I was fighting for.”

Jolene Brighten, NMD, FABNE, MSCP, naturopathic physician and author of “Is This Normal?” says, “Rituals like grounding barefoot on the earth, forest bathing, or simply soaking in a warm bath are more than comforting—they help regulate the nervous system, lower cortisol, and support the immune system. These small acts anchor us in the present and remind the body it is safe.”

She continues, “Even the way we speak to ourselves matters. Kind, compassionate self-talk can calm inflammation and activate pathways in the brain that promote healing. During serious illness, these practices become a bridge between the body, mind, and spirit.”

A Playlist, a Pushup (or 10), a Glitter Bomb of Positivity

“My family was so incredibly supportive, and we turned everything into a ritual,” says Sarah. “I had a playlist for chemo days. We blasted the song “Freedom” by George Michael when my husband would take the needle out of the port in my chest for the second dose of chemo each time at home. I watched a video my friends and family made for me of all of them doing pushups before every treatment—it was called ‘Strong for Sarah’, and everyone did 10 pushups each, to remind me how strong I was. It was all of my people rooting for me, and it was very special.”

Brooks had a different kind of visual strategy: glitter. “I created this theme, and it was glitter. I wore glitter shoes. Painted my nails glittery pink. I asked friends to send me pictures of their glitter nails. The angle was, I was going to ‘ob-glitter-ate’—or ‘obliterate’—the cancer…and I imagined the chemo was glitter—this magical substance wiping out the cancer.” It was a way to reclaim the story. “If I had to do this, I was going to turn it into something light and fun and playful.”

“One of the most empowering things I’ve seen my cancer patients do is to shift into a mindset of empowerment over fear,” says naturopathic medical doctor Chelsea Azarcon, NMD. “When you are diagnosed with cancer, it’s easy to feel like your body is out of control. Shifting your mindset helps take back control.”

Low-stakes Connection from People Who Meant It

Sarah’s friends and family created a 365-day prayer chain where someone different prayed for her each day. “Even people who weren’t religious joined in. It made me feel really seen,” she says.

For Brooks, it was flowers. “People think it’s a cliché, but flowers are just so classic,” she says. “They didn’t ask anything of me. I didn’t have to respond. It was just a really lovely, kind of low-pressure acknowledgment that they were thinking about me, that they cared.”

What Made It Harder

Here are a few things that made our journey harder despite the best intentions.

The Best Intentions, the Wrong Gifts

People sent Sarah lemon and ginger food and drink items because they thought it would help with nausea. “After a while, it was just too much. It started triggering me. And because of the chemo, certain smells made me sick,” she says. “Lavender lotion or candles – I just couldn’t.”

Or people would send ice cream from afar, but Sarah couldn’t even touch it because the chemo had made her so sensitive to cold. Anything even remotely cold made her hands and face sting. “It was such a nice idea, and even though I really wanted to, I just had to let the kids enjoy it,” she says.

Unwelcome Questions or Comments

Words matter – and especially when someone’s going through a tough period, it can be easy to say the wrong thing. “I hated when people asked if I had an ileostomy bag,” Sarah says. “I did for five months, and I was so embarrassed at the time. I didn’t want to talk about it. I guess it was just them wanting to know what I was going through, but that question is so deeply personal.”

Justin Yopp, PhD, associate professor of psychiatry at the University of North Carolina School of Medicine and program director of the UNC Lineberger Comprehensive Cancer Support Program, adds, “Family, friends, and the community can be key in supporting healthy coping during cancer treatment. At the same time, patients may be on the receiving end of unwanted sympathy, advice, or personal anecdotes. Patients should feel empowered to be clear with others about what is and isn’t supportive. People usually just want to help, so let them know what’s helpful.”

Other tough comments? “Assuming my lifestyle was to blame,” Sarah says. “We were just unlucky, and we got cancer, and it sucks. But I lived a very healthy lifestyle before. I know now that the only thing that could have prevented my cancer – both of ours – was a colonoscopy – to remove polyps before they developed into cancer.”

Brooks adds, “I struggled with the word ‘fighter.’ It just felt false because I didn’t have energy to fight – I didn’t have energy to do anything while on chemotherapy. I wasn’t ‘fighting’—I was just a shell of myself. Same with ‘survivor’. It makes it sound like we earned it. But honestly? It’s mostly luck.”

What Helped Us the Most

At the end of the day, it was the small things. Little gestures that showed someone was thinking of us, caring about us, or best of all, offering us something we didn’t have to arrange or accept on someone else’s schedule.

“’What can I do to help?’ is usually profoundly unhelpful,” says Brooks. “Because there’s not really anything you can do to help my cancer, and the types of ways that people can help are usually inconvenient for them, or feel weird to ask for. But what I really could have used was someone to come by and walk my dog, or bring me cooked lunch per my specific treatment dietary restrictions, or just come take a walk with me in the middle of the day. That would have been huge.”

So if you’re supporting someone with cancer, don’t overthink it or try to solve it. Just say, “I’m here, I’m thinking of you.” Send something small and kind – but maybe ask first if there’s anything they have too much of, or they’re even hating right now! And remember that even if treatment ends, the journey’s not going to be over for years.

We who have “survived” cancer – even if that’s not Brooks’ favorite way to talk about it – live with the constant fear of recurrence.

And that’s one thing that led us to create Worldclass. Reducing climbing rates of this disease is our mission, but so is showing people who are at all points along a cancer journey – even if they’re just loved ones and allies – that they’re not alone. It’s important to know that so many people have your back – including us, in spirit.

Key Takeaways

• If someone you know is battling cancer, avoid putting the onus on them to answer how they’re feeling or letting you know how you can help them.
• Offer up something they don’t have the bandwidth or energy to do, like walking their dog or bringing them a home-cooked meal.
• If you’re unable to do these things, or if they don’t accept them, simply letting them know you’re there is enough to help them feel supported and less alone.

In November 2015, my life changed irreversibly when my beloved mother was diagnosed with ovarian cancer. 

Overnight, I went from being a 32-year-old single woman with what I now call “cute” stressors (as in, “that’s so cute you thought that was stressful”) like if that boy was going to call me back, to the acute stress of being an only child whose confidant, cheerleader and best friend was battling a particularly nasty type of cancer.

I really learned the hard way—by lots of mistakes—how to support a loved one going through cancer treatment.

I was “lucky” enough to have had a few friends whose moms also had faced cancer, so I got some advice on how to show up for my mom, but what follows is the guide I wish I’d gotten then.

Be Honest With Yourself

What can you really do? Both from a time standpoint and an emotional resource standpoint. 

For example, if you’ve never been a baker, now is probably not the time that you’re going to bring over freshly baked homemade bread every week for your loved one. 

Similarly, if you know you have a demanding job, but you want to visit your loved one every day or even every week, it’s crucial to be honest with yourself about your capacity. 

“Being patient and present is what’s really important,” says Dr. Monique James, a psychiatrist at Memorial Sloan Kettering Cancer Center. And if you’re feeling stressed by your to-do list or other responsibilities while visiting your loved one, you’re possibly not being as helpful as you think, since you’re not being fully present with them. It can be better to perhaps see your loved one less, but have the time really be quality time. 

And if you find that you’re overextending yourself, says James, “there might be some underlying thing there that you need to address, whether that be righting a wrong from the past or working something else out for yourself.”

Center the Patient

A point that James emphasized several times was asking yourself the tough questions. Am I really doing this for myself or the patient?  Do I want to be thought of as the Best Caregiver Ever, or is this really what would help this person?

“If it’s ‘I’m doing this because I’m so anxious or scared,'” she says, “it doesn’t mean you don’t do it, but you pause and take a step and say, that’s interesting.”

If you find yourself operating from a place of doing everything you think you’re “supposed to be doing,” try taking some time to check in with the patient. Is this even something they actually want? 

For example, maybe you’re coming over every day when what they actually want or need is more time to themselves to process and/or go inward to cope with their diagnosis and treatment. Remember: everyone copes with things differently.

Be Specific

Often, when someone is diagnosed with cancer, they hear a ton of phrases and sentiments that, while they come with the best intentions, aren’t always received that way. 

The purpose of proposing something specific, says James, is “making it easier on your loved one.” Even if they’re not free next Monday at 4 and they’d rather you bring them matzoh ball soup, it takes the onus off of them having to be the on to come up with the plans and possibly feel burdensome asking for a certain kind of help.

If you’re having a hard time being specific in your suggestions, James suggests thinking of your specialties. 

Are you a creative person? Maybe you want to bring over craft supplies and create something together with your loved one. More of a chef? Maybe your loved one isn’t up to standing side-by-side with you to prep and cook a whole meal, but they can sit and chop vegetables with you as you cook.

Meet Them Where They’re At

Although you think you may know what your loved one needs better than they do, only they really know their capabilities and energy levels. Even if you have also had cancer—even the same kind—your circumstances were not the same even if they were similar. 

While maybe you were able to run three miles a day throughout your cancer treatment, your loved one truly may not be able to manage more than getting out of bed on a given day.

For example, you may be expecting that they would be feeling happy on a given day and show up ready to deal with that while they’re down in the dumps. Conversely, you may want to talk to them about their cancer when they’re having a day where all they want to do is escape everything and anything related to cancer. 

“When you meet up with someone,” says James, “It’s OK to say ‘what are you up to today?’ or ‘what kind of day is it today for you?’ rather than ‘how are you doing?’ Or ‘how did your last treatment go?’”

Also, you might want to visit them for hours on a given day, but perhaps all they want or can handle is 30 minutes. Putting your own expectations aside will help you avoid disappointment as well as truly help your loved one, since you’re giving them what they want and need, not what you want and need.

Ask for Permission

Sometimes the best way to handle potential awkwardness is to just plain address it.

“It’s OK to acknowledge that you’re feeling a little helpless,” says James, though she emphasizes that beyond that, you should absolutely be seeking your own support.

“But ask for permission on how [your loved ones] want to go about it—anything from ‘how do you like to communicate? Can I send you a text or a joke? Or are texts crazy, and you want to be out of your phone, and you want me to call you?” Take solace in the fact that truly just showing up is doing something; research shows that those with higher social support faced lower levels of uncertainty in their cancer journeys and even had better health outcomes.

She also says to ask for permission to visit, rather than just showing up. Try offering and suggesting times that you will or can come over, rather than putting the responsibility on your loved one to also check their schedule and let you know when they’re free.

Key Takeaways

• Above all, James says, “keep the person going through it at the center of your motivation, and you’ll be fine.” As long as you keep returning to that, rather than to what you think you should be doing, you’ll be on the right track. 
• Put your ego aside and check in on what’s really going on with both you and your loved one as you offer support. You’ll make more of a meaningful impact than you might have imagined.
• Be patient and fully present when you do spend time with them, even if you have to see them less to achieve that.

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

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.”

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

“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.”

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.