‘Life Is Never the Same Again’: Cancer Survivors Describe the Most Difficult Elements of Survivorship

People may often believe that cancer is over when a patient enters remission, however many of the difficulties that survivors may experience have only just begun. From long-term physical side effects to emotional distress and difficulty socializing, cancer survivors may experience a wide range of tribulations.

In a recent #CureConnect social media discussion question, CURE® asked its readers on Facebook, Twitter and Instagram, “What is the most challenging part of cancer survivorship?”

Here’s what they shared:

Resuming Typical Social Activities Can Be Hard

Some patients with cancer are forced to avoid social situations like work or school while undergoing treatment because they are at a higher risk for developing an illness or are too sick to participate.

Others may have undergone body-altering cancer treatment surgeries that left them with new physical insecurities, making it hard to confidently return to the dating field or social gatherings.

Whatever the cause, several cancer survivors expressed how challenging it can be to resume these aspects of life.

“Right now, my biggest struggle is feeling comfortable getting back into the dating scene! It might seem trivial in comparison to other struggles, but I think it's something many of us struggle with. How do I tell someone new that not only did I go through this major health crisis, but that I also lost my breasts because of it?” wrote Amy S. on Facebook.

Adding to the conversation, Tracy A. wrote, “Reminds me of the cold comments a couple coworkers made when I was struggling to get back to work, and still in radiation … ‘she should be used to how she feels by now.’”

Several other commenters resonated with the lack of understanding from others, who did not understand why they hadn’t yet moved on from their cancer experience.

“Mentally coming to terms with everything you just went through when the outside world thinks you’re done now,” wrote CURE® Ambassador Lorelei Colbert on Instagram.

“Every day someone says, ‘You look wonderful!’ My thought is if I could only feel as half as good as I look, I’d be blessed,” Dorothy C. wrote.

“Not being able to do all the things I could do prior to having cancer. I look healthy but looks can be deceiving,” noted Daphne S.

Fear of Recurrence

One of the most common responses was fear of recurrence and “scanxiety,” with the dread over whether their cancer may return which in turn overwhelms and distracts many survivors from everyday life.

“That little voice in the back of your mind that says, ‘What if it comes back?’” Ryan J. wrote via Facebook.

“Annual checkups — waiting for the shoe to drop and have the cancer return,” Cindy J. added.

Other commenters like Beth G. pointed out that they experience post-traumatic stress disorder (PTSD) after having had cancer.

“That it's always part of you, every single day, and the fear of reoccurrence is always there hanging over you,” explained Vanessa R.

Pain Doesn’t End With Remission

Many cancer survivors explained that they were left with difficult-to-manage side effects which interrupt their quality of life as a result of their cancer and/or treatment.

“I would say the battle of being able to triage the aftermath of post-cancer. It has been a complete uphill battle ever since 2006. A patient (with cancer) does what one has to in order to survive ... I have been trying to manage for the past 16 years. Every day is a struggle that I am forced to live with in constant pain in one way or another,” wrote Jennifer O. in an Instagram comment.

“Your body is not the same anymore from the treatment and surgeries. The daily anxiety and worry never go away,” Penny B stressed in one comment.

Other commenters spoke specifically about the debilitating side effects they experience.

“Currently I can’t bend my fingers, my arms are hard as rocks, my legs are so stiff I can barely walk … I survived cancer because of the transplant, but it comes with a ton of other problems. I’m on treatments to treat graft-versus-host-disease (GVHD). My memory is practically gone since the transplant and I have GVHD of my eyes, mouth and liver, too. I’m happy to still be here but it’s really hard to function like this,” explained Ruthie F.

“As a 20-year (patient with) metastatic breast cancer, it's the extreme tiredness and memory/focus issues,” said Anette B.

“The lifelong side effects from treatments, that nobody warns you about and few oncologists seem to care (or know) about,” Christine L. highlighted in a comment.

“Chemo brain/brain fog doesn't go away after chemo stops,” wrote Mel A.J. “(And) worrying that one day it will lead to dementia.”

Survivor’s Guilt

Finally, some cancer survivors expressed the mixed emotion of survivor’s guilt — through which they feel relieved and happy to be in remission yet guilty for surviving when others didn’t, and not understanding why they seemed to receive the luck of the draw.

“Survivor guilt. Found the lump 11 years ago today. I’ve made it, but my neighbor/close friend got it three years ago and didn’t survive,” said Jodie E.

Some survivors offered advice and inspiration for others on staying positive despite the difficulties.

“I am EXTREMELY thankful and blessed to be among my family and friends. There are others who are not as fortunate, I remind myself every day,” said Jennifer C.

“It really never ends, but you have to keep going, accept what (it) is, smile, and live your life as best you can! Doing that right now!” noted Dorothy K.

Some cancer survivors urged that many people don’t understand any of the sentiments expressed about life after cancer.

“Everyone thinks once you finish treatment, that’s it — you are cured, and your life is back to normal — but that’s far from the reality. Life is never the same again,” Judy V.D.B. expressed in a comment.

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