Cancer survivor Leslie Gauthier speaks to attendees at the launch party for Fabulous and Fighting. Photo courtesy of Grassroots Films.
“I lived my life better when I was sick,” says Leslie Gauthier, who was diagnosed with an aggressive T cell lymphoblastic leukemia in November 2011, just a few months after graduating from college. “I didn’t take anything for granted. I said what I needed to say. And I kept positive people around me. That’s a model for how I want to live now, and I feel guilty when I don’t do that.”
No matter what kind of cancer you’re diagnosed with, coping with its emotional toll can continue long after active treatments are over. The aftermath can lead to a tangle of complex feelings. For those who enter the world of cancer survivorship, guilt is often one of those emotions.
After more than two years of chemotherapy, Leslie says guilt is a part of her life that she’s working to overcome.
Cancer survivors may experience a range of guilty feelings in addition to what is considered classic survivor guilt — surviving the same thing that someone else dies from. Some people may feel guilty about disrupting the routines of friends and family members, especially those who had to give up extensive amounts of time to provide care. Others may feel guilty about not doing everything they can to live the best life possible after surviving cancer.
“Often when people are diagnosed with cancer, they contemplate their own mortality and vulnerability for the first time,” says Kimarie Knowles, a Memorial Sloan Kettering clinical social worker who works with cancer survivors. “The feelings of powerlessness or helplessness that can be triggered in the face of illness are overwhelming. Guilt can be a way to protect us from those feelings, because it’s something we feel we can control.”
Leslie, who is now cancer free, participated in a support group for young cancer survivors led by Ms. Knowles last year. She developed close bonds with others in that circle. “We talk all the time about how it’s important to lead a life that’s meaningful and full of joy,” she says. “I’ve been given this time, and doing things that are meaningful — including connecting with others who are going through cancer — is the best way to combat the guilt.”
Painful Feelings Triggered by Trauma
Cancer patients may develop special attachments to others who are being treated at the same time they are. Even if they never speak to them, they often connect emotionally to other people they regularly see in treatment and in waiting rooms. One sign of survivor guilt, Ms. Knowles says, is when patients try to minimize or dismiss their own cancer experience because they believe other people are worse off than they are. “They may say, ‘I only had surgery, while he had surgery, chemotherapy, and radiation,’” she notes.
Survivors coping with these emotions often feel that they need to justify their existence or that they don’t deserve to be here, Ms. Knowles says. This often speaks to the feelings of powerlessness and grief related to their own cancer experience. “We as social workers try to look deeper and understand what people are struggling with,” she says. “Once we help them recognize their feelings connected to the guilt, they often have an aha moment, which helps them to begin moving past it.”
“These feelings can come out anytime someone is looking at issues of fairness,” says MSK clinical social worker Susan Glaser. “People who have experienced trauma are comparing themselves to others. Survivors look at other people who did everything ‘right’ but died anyway and try to make sense of that.”
Back to topRecognizing Emotions and Moving Forward
Aside from her support group, Leslie has connected through social media with a young woman who currently has leukemia, sending her encouraging messages, singing a song for her on a video, and even mailing her a care package of items that friends had given Leslie during her own treatment. “Reaching out to her makes me feel better,” she says. “The worst thing for me would be feeling like I was sitting on my hands and not doing anything to help this other person.”
Leslie has also become active in two groups that support cancer patients and survivors: Fabulous and Fighting, which helps women going through cancer treatment by providing clothes donated by designers, and True North Treks, which takes young adult cancer survivors on free outdoor adventures that help them connect with nature.
Comments
Rose Mary Battista
Jun 29, 2016 • 1:13 PM
Memorial Sloan Kettering
Jun 29, 2016 • 3:34 PM
In reply to I thought I was crazy. But… by Rose mary Battista
Rose Mary, thank you for sharing your story. We’re glad to hear you’re cancer free. If you’re having these feelings, you may be interested in participating in Connections, our online support group for cancer patients and survivors. You can learn more about it here: https://www.mskcc.org/experience/patient-support/counseling/groups/conn…. You can learn about other counseling and support groups at https://www.mskcc.org/experience/patient-support/counseling.
Carol Radsprecher
Jun 29, 2016 • 4:22 PM
Memorial Sloan Kettering
Jun 29, 2016 • 4:29 PM
In reply to MSKCC saved my life! It's 17… by Carol Radsprecher
Jerry Evans
Jun 29, 2016 • 5:04 PM
This is so familiar to me. Our daughter (Emily) was treated and cured at MSKCC 8 years ago. She made 3 close friends. Rhabdo kids they called themselves. One younger girl there from Dubai and Emily became extremely close. Emily was the only survivor. The loss of Dania was extremely hard on Emily. She is still in counseling but still has a hard time becoming close to anyone. Afraid to go through a loss again. I'm glad that Leslie has been able to work her way through this. It gives me hope.
Memorial Sloan Kettering
Jun 30, 2016 • 9:55 AM
In reply to This is so familiar to me… by Jerry Evans
Leslie Barshop
Jun 29, 2016 • 10:33 PM
I had stage 1A lung cancer which was discovered by accident - a CAT scan after extensive spinal surgery to rule out a collapsed lung. I subsequently had a lobectomy at Sloan. I did not need chemo or radiation. Am I a survivor? Should I deal with the fact that I had lung cancer. I feel like I didn't suffer enough
Memorial Sloan Kettering
Jun 30, 2016 • 10:00 AM
In reply to I had stage 1A lung cancer… by Leslie Barshop
Dear Leslie, we are sorry to hear about your diagnosis. The definition of a cancer survivor can vary with each individual, but most agree that a person is a cancer survivor from the moment of diagnosis. It has nothing to do with your treatment experience or whether or not a person has found the experience to be a difficult one. If you feel like you are having a hard time coping with your cancer experience it may be helpful to speak with a social worker or psychologist to sort out those feelings and get some support. We wish you well.
AnnMarie Jones
Jul 25, 2016 • 5:21 PM
I get really sad whenever I hear of someone's diagnosis of cancer or passing from cancer. I'm a survivor of four years. I thank God everyday for healing me and directing me to the great professionals at Sloan Kettering. I'm learning about survivor guilt and understanding better what it really means to experience that emotion. I've recently begun meeting with a therapist on a weekly basis to help me cope and understand the emotional struggles I face as a survivor. I do experience fear but my faith helps me during those times.
Memorial Sloan Kettering
Jul 26, 2016 • 12:26 PM
In reply to I get really sad whenever I… by AnnMarie Jones
Diane M Gooding
Jan 1, 2018 • 2:36 PM
I am currently in remission from peritoneal cancer. I wasn't sure what to call what I am feeling...but now I realize it is survivor's guilt. I lost one of my dear friends to this exact cancer in 2011. I have remained good friends with the man she left behind, but every time I speak to him I can't help but wonder why I was spared and she wasn't.
Memorial Sloan Kettering
Jan 1, 2018 • 2:38 PM
In reply to I am currently in remission… by Diane M Gooding
Lea A.
Jan 4, 2018 • 9:43 AM
I got diagnosed with NHL in May and quickly went through 6 cycles of chemo. I had been in pain but as soon as the next day after my 1st cycle, I felt a million times better. Chemo never gave me terrible side effects except for mild nausea, fatigue and complete hair loss. Once I was done with chemo, I had radiation which was also easy. I'm struggling to connect with other people because my story hasn't been a terrible one so far. Sharing stories with other Cancer survivors is actually heartbreaking to hear how others have suffered or received bad news after bad news. And then I tell myself to slow it down that I've been in remission for like 2 months and it can always come back and I feel like I'm willing myself to get sick again because I got off too easy or something. I don't want to get sick again at all but I feel this weird sort of way. I don't know how else to describe it except for the terrible way that it sounds and it sucks to not be able to express it to anyone. My family suffered with me and I can't believe I feel this way.
Sharon Nichols Keith
Feb 3, 2018 • 7:00 AM
I’m about 3 years out from 10 months of chemo and a stem cell transplant to treat acute lymphoblastic leukemia. My hair is long again and yesterday my doctor declared me as close to cured as I’ll ever be. On my way home, I couldn’t stop crying. I’m so grateful, but also tortured by the fates of friends I’ve made in other patients who were not so lucky. I did nothing to deserve this. I was born into a family that was able to be an incredible support system; I had access to the best care. I married the kindest man alive after diagnosis, a man who could easily have walked away. But why am I not overjoyed? I did not expect to ever be here. I’m not a “fighter.” I didn’t choose how my body reacted to treatment. I was simply lucky, and paradoxically I don’t know if I want to live in a world where so many people suffer and die simply from an unlucky roll of the dice. I feel guilty about feeling guilty. I don’t know how to move on. Please don’t tell me about God. A loving God would not do this to good people. Where do I go from here?
Memorial Sloan Kettering
Feb 5, 2018 • 1:32 PM
In reply to I’m about 3 years out from… by Sharon nichols keith
Dear Sharon, we’re glad to hear that your health is good, but very sorry to hear that you are having these feelings. We recommend that you ask your oncologist or regular doctor for a referral to a psycho-oncologist. This is a psychiatrist or psychologist who specializes in working with people who have gone through a cancer diagnosis.
In addition, you may find it helpful to participate in a support group. MSK also has an online community for people who have gone through cancer as well as their family members. You can learn more at: https://www.mskcc.org/experience/patient-support/counseling/groups/conn…
Thank you for your comment, and best wishes to you.
Lisa Masterson
Mar 9, 2018 • 9:55 AM
I found this page while googling. Having a hard time today. I'm cancer free as of last July. My chemo and radiation mate has mets and is now in hospice care. Breaking my heart.....I would have gladly taken her place. My grandbabies are almost grown and hers are just littles. Her daughter-in-law is pregnant. But good to know that these feelings are normal.
Memorial Sloan Kettering
Mar 9, 2018 • 1:52 PM
In reply to I found this page while… by Lisa Masterson
Jorge Anne Weaver
Sep 21, 2018 • 6:52 AM
I was diagnosed with stage one cervical cancer and am now 6 months cancer free. Yesterday my very good friend died from brain cancer and I gpfelt myself saying why am I here but she's not ? My sister is an ICU nurse at Mount Pococno and sent me this to read . I never knew about this befire but it makes sense of my feelings . Thankyou
Memorial Sloan Kettering
Sep 21, 2018 • 2:24 PM
In reply to I was diagnosed with stage… by Jorge Anne Weaver
Marie
Oct 25, 2018 • 10:16 AM
A friend of mine at work is supporting her best friend who is going thru breast cancer. It's been hard on my friend since the woman with breast cancer is about to die. They have given her a month or so left to live. My friend knows I've survived cancer and wants to confide in me her feelings. I can't listen without obsessing about it and wondering why I survived. I can't even watch tv shows where someone has cancer without feeling earth-shaking empathy and invoking all the feelings I had when I was actively dealing with cancer. The thing about cancer is, you can't un-do the experience. You learn tools to help you cope, but your experience and survival has shaped your life. Most days I don't think about it anymore but pre-scans and days when I hear about the woman with breast cancer I get completely obsessed with my mortality. I never became friends with anyone who had cancer because it didn't help me. I didn't want to be in the fight together with other cancer fighters. I didn't want to be in the fight at all. I considered myself a survivor from day 1 and surrounded myself with healthy people. Thanks for the nice article.
Laura
Jun 1, 2019 • 2:39 PM
Thank you for your article. I am a 10 year colorectal cancer survivor. As I was celebrating these 10 years of life I suddenly had a great weight of grief fall on me. I recognize that it is Survivor's Grief. Thank you for reminding me that this is normal, and that celebrating my own survival doesn't diminish the grief I feel for those I know who didn't survive.
Steve Scalici
Aug 21, 2019 • 10:38 AM
The fear of recurrence is omnipresent...and I’m 21 years out from MSK’s treatment. And I remember all the rude comments, even during chemo (when it was clear I was ill)...”What happened to you?” stands out in the recesses of my brain. So in health, the haunting memories of treatment and “being seen” in public remain. I just try not to focus on them.
Memorial Sloan Kettering
Aug 21, 2019 • 11:29 AM
In reply to The fear of recurrence is… by Steve Scalici
I thought I was crazy. But to know that others suffer from this makes me feel better. I'm a survivor fought my fight til it was gone. With the BEST ppl in the world. Mskcc. I'm 20years cancer free. But every time someone gets it. I say why did you make me survive. Well I've been living in fear for since day one. I can't kick the feeling. I hate this n wish it would stop.