In Your Own Words: The Emotional Impact of Cancer and Loss – Survey Results

Receiving a cancer diagnosis often leads to a surge of strong emotions, including shock, disbelief, anger, and fear. It may be difficult to put into words what you feel, and you might not steadily progress through a set series of emotions. It can be helpful to know that, however you are feeling, there are others out there who feel the same.

In January and February 2025, Patient Power invited our community to describe your journey in a survey about the emotional toll that cancer takes, how you cope with the sense of loss following a diagnosis, and any positive emotions that may have come out of your cancer experience. More than 600 of you shared your thoughts and feelings with us and each other.

Here, we present the results of that survey, including how responses differed according to age and gender, as well as some of your reflections on the emotional journey of living with cancer.

Patient Power asked, What’s been the most challenging part of navigating your diagnosis?

Among the multiple-choice responses, the most commonly selected answer was “people saying you don’t look sick.” Across all groups, 53% of respondents chose this response, including 56% of women and 47% of men. About 29% of people reported that they found the biggest challenge to be people avoiding the topic around them.

This question received quite a few write-in responses, with a wide variety of opinions. Some people felt frustrated that friends now treated them differently, whereas others felt sad that their friends behaved as if nothing had changed.

Some themes came up again and again. Many people with cancer noted that friends assume that “if you look fine, then you are fine,” when actually they are struggling with invisible symptoms, such as anxiety, fatigue, or brain fog.

“People say ‘You got this!’ without really understanding how little control one has,” replied one newly diagnosed individual.

Another person pointed out that “after my hair came back, people think it’s over,” when it’s anything but.

Multiple people mentioned that their biggest challenge was accepting a new normal. “Joining the Big C club is a lifetime membership,” lamented one person.

The comments respondents wrote in response to this question fell broadly into a few common themes:

Social and Emotional Isolation

Some shared struggles with loneliness, feelings of being forgotten, and the emotional toll of their diagnosis:

• “People distancing themselves from me, like I was contagious.”

• “People who initially were available and then disappeared.”

• “The uncertainty and how to continue living while grieving the loss of my life without cancer.”

Others shared that they could no longer participate in activities they enjoyed, either because of the risk of infections or because of exhaustion.

Lack of Support from Family, Friends, and Healthcare Providers

Some reported a lack of family support, emotional neglect from healthcare providers, or frustration with insensitive remarks:

• My “family [does] not like to talk with me about cancer.”

• “People minimizing my disease, ‘at least it was caught early.'”

• “Doctors who give rah-rah instead of answers.”

Physical and Lifestyle Limitations

Chronic fatigue, treatment side effects, and restrictions due to immunocompromised status were frequent concerns:

• “Tremendous fatigue (invisible).”

• “Loss of active life.”

• “Isolation during flu, COVID, RSV season each year.”

Navigating the Healthcare System and Uncertainty of the Disease

Some found it difficult to access clear medical guidance, manage appointments, or deal with the unknown:

• “Terrible communication with doctors’ offices.”

• “Overwhelmed by choices that have to be made for which I have no preparation.”

• “Not knowing what might be the next health crisis.”

Coping with Watch and Wait

A significant number of respondents described anxiety related to monitoring their disease without active treatment:

• “While in ‘watch and wait,’ I look fine on the outside, but on the inside, I have anxiety about the unknown.”

• “The fact that knowing you have cancer never leaves your mind.”

Patient Power asked, What emotions manifested for you when you received your diagnosis?

As might be expected, the most common reaction associated with a new diagnosis was Fear and Anxiety, with about two-thirds of respondents overall and three-quarters of those younger than 65, selecting this response. We described Fear and Anxiety as including concerns about treatment, side effects, long-term outcome, or how the diagnosis will affect family, work, and other responsibilities.

Coming in a close second was Shock and Disbelief, which was again more common among younger patients versus older ones (60% vs 50%). Patients younger than 65 were also more likely to express Loneliness (39% vs 29%) and Anger, Guilt, and Blame (30% vs 13%).

There were also differences by gender, with 56% of women and 42% of men expressing Shock and Disbelief. Females were also more likely to express Loneliness (36%, compared with 21% of males).

Sadness and Depression had fewer variations across groups, with just under half of people overall choosing this response (46%).

But not all emotions were negative. Several people wrote that they felt Relief because they finally had an answer to what was wrong. Others mentioned Determination to pursue treatment or to accomplish certain goals while time and energy permit.

The survey suggests men and women seek support differently. Among both groups, the most common way to process emotions after a diagnosis was to talk to a care partner, family, or friends.

Women, however, said they were more likely than men to turn to support groups, professional therapy, or spiritual resources, with 51% of women reporting that they used these resources, compared with only 37% of men. Women were also more likely than men to engage in mindfulness practices, including journaling (31% vs 18%).

For their part, 42% of men reported seeking support from their doctors or nurses, compared with 32% of women.

Many people living with cancer reported that exercise, prayer, or engaging in research to learn about their disease helped them cope and not become overwhelmed. Several people noted that they coped by focusing on daily tasks. “Try to live in the moment,” said one respondent. “Walk outside every day. Practice gratefulness. Support others going through cancer.”

After the initial shock wears off, a cancer diagnosis often involves an ongoing emotional journey, as treatment may include periods of watchful waiting, weeks or months of chemotherapy, and potentially, cycles of remission and relapse.

When asked with whom they share their cancer story, the most common answer was family (79%) and friends (69%). However, women were more likely than men to turn to support groups (33% vs 23%), and men were twice as likely to say “no one” (13% vs 6%).

Again, people’s attitudes and needs differ. Although some people reported that too much sharing made them feel as though the cancer has outsized power over their lives, others wrote that cancer opened up opportunities to connect with strangers who might be going through something similar. And some people reported taking the opportunity to share their experiences on a public stage, such as by writing books or articles or speaking publicly about cancer.

A cancer diagnosis likely means spending more time interacting with medical personnel, including physicians, nurses, or other providers. When asked who on their oncology care team has been particularly helpful emotionally, almost half of respondents mentioned their oncologist or other physician. This was particularly true for those diagnosed more than 4 years ago (49%, compared with 38% for those diagnosed more recently). It was also more often the case among blood cancer patients (50% vs 36% for all other cancers).

Some individuals said that a social worker was most helpful when dealing with emotional issues, with those diagnosed within the past three years more likely than other to say so (9% vs. 3% of those diagnosed longer ago).

A few people mentioned their palliative care team.

Unfortunately, just over 10% of people reported that no one on their oncology care team provided emotional support or offered solutions:

• “My team never addresses emotional needs”

• “Oncology is too busy to focus on emotions”

This suggests an opportunity for oncology teams to provide patients with emotional support resources and lists of options they may pursue.

However, many respondents clarified that they didn’t seek or expect emotional support from their medical team:

• “I never really asked anyone and am trying to handle it myself”

• “I don’t discuss my emotional thoughts”

One person put it frankly: “Because I didn’t open up about my emotional needs, I didn’t get emotional support from my care team. They aren’t mind readers.”

For people who are newly diagnosed, it may be hard to imagine getting past the initial sense of grief or loss associated with this major life change. They may be comforted to know that among those surveyed, the vast majority stated that their sense of loss or grief has diminished over time, with about one in five people reporting “it’s almost entirely gone.” Interestingly, once past this initial window, people living with cancer for a long time reported little difference. In other words, the people who were diagnosed more than four years ago felt the same way as those who were more recently diagnosed.

Patients younger than 55 may be less likely to say it’s “almost gone,” although the difference was not statistically meaningful. Still, there are some for whom time hasn’t diminished their sense of loss or grief – about one in seven reported “no change.”

Not only do most patients find their grief and loss fading with time, most reported finding something positive resulting from – or despite – their diagnosis. More than 60% said they have a better understanding of the importance of time, while about half said they have increased compassion for others. Additionally, nearly four in 10 found that social status and material possessions/wealth took on less importance after their diagnosis.

In the written comments to this question, several people mentioned a heightened sense of gratitude, as well as improved relationships – both by letting go of people who weren’t true friends and by growing closer to those who are truly supportive. Going through such a trial can bring relationships into clearer focus, several said. One person shared, “I finally realized that I was indeed loved and, more than I could imagine, showed me I was worth saving! Love quite literally helped save my life.”

If people living with cancer aren’t getting the support they need in person, there are a wealth of online resources that they might find helpful. When asked which online resources individuals found most helpful, they overwhelmingly chose Cancer-Focused News and Information sites (such as Patient Power), with about 75% of people selecting this option.

About a third of respondents mentioned a website designed specifically for their cancer type and another third mentioned online cancer support groups. The next most common answer was the hospital or medical center website. Men chose this option twice as often as women (16% vs 8%). Men were also twice as likely as women to say they had not found any online resources helpful (10% vs 5%). Several people mentioned Facebook groups that specifically address their type of cancer.

Although the responses to the survey overwhelmingly came from patients/survivors, 30 care partners did weigh in. All said they felt a sense of loss/change with the diagnosis of their loved one, with seven in 10 saying “in a huge way.”

Their emotional responses mirrored those of patients/survivors, with two in three expressing fear and anxiety, and nearly half reporting shock/disbelief and loss of control.

They processed loss in the same ways as patients, talking with family and friends and seeking support in groups and from professionals. Care partners also found cancer-focused news/information websites (like Patient Power) to be the most helpful online resource.

Interestingly, a smaller proportion of care partners than patients reported that their sense of loss and grief had diminished with time, only 57% compared with 86% of patients.

Also, care partners were less likely to find something positive in the wake of the diagnosis, with 28% responding “nothing positive” compared with 14% of patients.

As these survey results show, each cancer journey is unique, but many patients and care partners share similar emotions. Today, there are more ways than ever to meet your emotional needs, whether it’s reading research, joining a support group, finding the right care team, or expressing your needs to loved ones. Whatever you’re feeling, know that you’re not alone – others may be experiencing similar emotions, too.