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The weight of survival: Coping with survivor's guilt after beating cancer twice

Updated: Nov 1, 2023

I've survived cancer. Twice. It's a statement that still feels surreal. And while I'm incredibly grateful for being a two-time stage 1 cancer survivor, there's a heavy, haunting feeling deep within me: survivor's guilt.

Sometimes, I feel uncomfortable when I talk to people about having cancer.


Odd, considering how many posts I've written about the experience. But there's a difference between stringing together a few hundred words for a faceless audience and speaking directly to a human being.


There's this gnawing feeling in my gut—this sense of shame eating away at my insides. I know some people expect to hear this long, harrowing story of making it through chemotherapy. Or that I survived cancer at a more advanced stage. Or that I'm still fighting in some way—maybe something suspicious still lingers, maybe my surveillance protocol is more aggressive.


Something, anything, that signals it's okay for me to be upset over having had cancer, twice.


Even while writing these words, I feel the tears welling up behind my eyes.


Survivor's guilt is a peculiar beast. It sneaks up on you when you least expect it, lurking in the shadows of your thoughts, ready to pounce when you dare to feel the lightness of being alive. It's a complicated emotion, one that I've grappled with since my first diagnosis—and one I will continue to carry every day for the rest of my life. Every day I am free of cancer, every time I look at my scars.


Every moment I get to be alive.


Understanding survivor's guilt


For those unfamiliar with the term, survivor's guilt is an emotional response experienced by people who have survived a traumatic event or illness when others did not. It's a gnawing sensation that whispers in your ear, "Why you? Why did you make it when so many others didn't? Why did you get to have it easy while others didn't?" For cancer survivors, the guilt can be particularly intense, as it forces you to confront the stark reality of life and death.


Society has certain views of cancer. In entertainment, it's a plot device—the horrifying event that sets off the conflict we're witnessing play out on the screen. In media, it's fodder for news coverage—the heart-wrenching profile, the story of hope and courage, the power of modern medicine. In communities, it's a unit of measure—to which extent are we strong, are we resilient, are we blessed?


Cancer survivors internalize these messages. We construct our personalities around them. We ignore our fears and worries because we know we should be grateful at all times. We shove aside our sadness because we know we should be positive every day. We dare not give voice to our darkest thoughts because then we shatter the illusion of the "cancer warrior."


Instead, we feed the survivor's guilt that lurks around us. For some people, the guilt stands far enough away that you can outrun it. But when you've been diagnosed with stage 1 cancer twice, survivor's guilt holds your hand tightly, and you can never let go.


Why cancer survivors feel survivor's guilt


Why do many cancer survivors, especially those who've battled stage 1 cancer, experience survivor's guilt? Here's my take on it.


Comparative suffering. The other day, while grabbing breakfast at our local taco house, the cashier asked about the scar on my neck. She wanted to know if I had a thyroidectomy, as well. "Was it a total?" Yes. "Did you have any complications?" No, I didn't. Not really. My calcium was low, and I had to watch it for a few weeks, but it's back to normal. "Oh, I had complications. They nicked one of my parathyroid glands." Then, her mom stops by the register. "Look, she had a total thyroidectomy too, but no complications." In that moment, I was no longer a cancer survivor. Instead, I was the girl lucky enough to not have complications. I could have told her my life story. I could have explained that this was my second time dealing with cancer in a very short period. But it wouldn't have mattered because I didn't have to take 7 calcium pills a day for the rest of my life.


Survivors often compare their experiences to those who faced more advanced stages of cancer, endured more aggressive treatments, have experienced lasting complications, or didn't make it. In fact, cancer often brings us into close contact with others who are battling the disease, and when we see friends or fellow patients lose their lives to cancer, it can intensify feelings of guilt. We question why we survived when they didn't. We might feel we haven't "suffered enough" to deserve their second chance or to feel any emotion other than grateful.


Impact on loved ones. My 8-year-old son told me two weeks ago that he thinks I am going to die of cancer; I can't promise him I won't. After all, doctors told me that it is unlikely I will have kidney cancer again—but they never warned me about the possibility of another primary type. It felt like I lied to my son the first time, that I gave him false hope. And because of me, he will live with this fear—no matter my health status.


Of course, neither my son nor my partner blame me for my health issues. Despite the barrage of New Age-y TikTok videos telling us so, we can't actually stop cancer from eating a strictly raw diet, using essential oils as medicine, and putting a glass egg in our privates. But witnessing the pain our loved ones endure while we coped with cancer can compound survivor's guilt. We may feel guilty for causing them worry, stress, and sadness because in our minds, we should have had some control over the battles fought in our bodies. And it's hard to make that guilt go away.


The fear of recurrence. "The chance of recurrence is extremely rare, like 2 to 3 percent," my urologist told me at my first 6-month checkup. We caught the cancer early, he explained. Plus, he scooped out the whole left kidney to avoid leaving any cancer cells behind, so I should be fine. I had been—my surveillance scans so far show that I'm NED (or "No evidence of disease"). Of course, that doesn't stop my anxiety. After all, I had a rare kidney cancer—chromophobe renal cell carcinoma—so the word "rare" means nothing to me. Because anything could happen.


It did. I experienced another rare form of cancer. While thyroid cancer is often described as "common," statistics state otherwise. Less than 44,000 new cases of thyroid cancer are diagnosed each year in the United States; women make up roughly 31,200 of those cases. By comparison, breast cancer accounts for 1 in 3 new cancer cases in women each year. And although thyroid nodules are fairly common, they are most often benign; the chance of malignancy is 5% to 15%.


But now, I've been told the same thing as before: that, although thyroid cancer has a high rate of recurrence, the chance that it will come back for me is slim. Do I believe this? Sort of. Am I worried an entirely different cancer will pop up? Absolutely. Surviving stage 1 cancer once is a relief, but when it strikes again, it feels like a cruel twist of fate—a fate you feel you may never escape. The fear of recurrence is overwhelming, as is the guilt that comes along with surviving cancer once again.


Life's uncertainty. Thanks to modern medicine, more and more people are surviving cancer and living full lives. And with the decrease in mortality rates, it's hard to forget that cancer is still a life-threatening disease—one that cannot be addressed with one standard treatment, because there could never be one standard treatment. There are too many diverse cancers for that ever to be the case. Some cancers have no treatments at all. This means we may not survive a stage 1 cancer that recurs at stage 4.


Survivors often grapple with the fragility of life and the realization that it can be taken away at any moment. This awareness can make every day feel like borrowed time, amplifying survivor's guilt. For those who've faced cancer twice, the guilt can be even more profound. It's as if we've cheated fate twice, and the burden of responsibility feels insurmountable. We might question why we were given a second chance when others weren't even granted a first. We may ask if we deserved a second chance at all.


We are valid


To anyone wrestling with survivor's guilt, whether you've survived cancer once or twice, I want you to know that your feelings are valid. Embrace the complexity of your emotions, and don't suppress them. Seek support from friends, family, or a therapist who can help you navigate these challenging emotions.


Remember that survival doesn't diminish your experiences or the pain you felt. It doesn't mean you've stolen someone else's chance at life. Instead, it's an opportunity to honor those who couldn't make it by making the most of your life, cherishing each moment, and advocating for better patient care, funding cancer research, and improved support for others.


Survivor's guilt may never completely fade away, but it can be managed. And in the process, you can find a way to turn your guilt into a renewed sense of purpose to make the most of the life you have.




2 Comments


trapoyneer
trapoyneer
Oct 21, 2023

Great article! Thank you for writing about this. You are one of my inspirations. 🧡

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Coach Anna
Coach Anna
Oct 21, 2023
Replying to

You’re too sweet. 🧡 I’m glad this post helps.

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