A cancer diagnosis often brings concerns about how long your life will be. In these two “Moving Forward” videos from ASCO and the LIVESTRONG Foundation, learn from oncology experts and young adult survivors about coping with this common fear.
Lineagotica® A Patient Education Series for Young Adults with Cancer
ASCO® American Society of Clinical Oncology
Fear of Dying
Lidia Schapira, MD, Member, American Society of Clinical Oncology: It's really hard to be young and to face a diagnosis of cancer and perhaps an uncertain future. Many of my patients tell me that they are afraid that the cancer may come back or they are afraid of dying of cancer before their time. This too is common. How can it not be?
Diane Blum, MSW, Member, American Society of Clinical Oncology: I think it's even harder for people who are young adults because it's so out of the realm of what they've expected. That no one wants to know they have cancer, anybody worries they're going to die. In your 20s, that's not supposed to happen and it's very, very difficult to incorporate this diagnosis with where you are in your life.
Dr. Schapira: After the initial shock, the most important thing, perhaps the first step in successful coping is thinking who's going to be there to help you through this. So you need human warmth, you need something that gives you calm and comfort, and most importantly, time to enjoy the things that make your life meaningful. What I've learned and what research shows is that the first 100 days were the worst, and after that, most people find their own inner strength and their ability to cope and chart a way forward. Finding sources of support is incredibly important to get over the initial dark few weeks at the beginning. And then move on to a place where you can have more confidence, more strength, and really start to think about coping with the rest of your life.
Diane Blum: It's good to try and talk to your physician and to your healthcare team to find out kind of what their expectations are. Perhaps you're going to have to go through a lot, and it's going to be a while that you're going to be feeling sick and that you might expect to feel like this more, or perhaps this treatment is really going to proceed quite smoothly and you're going to feel okay. And these feelings of-- and fears of dying will recede some. Expectations can't be guaranteed because no one will give you that, but it can help to put this in some kind of realistic perspective.
Dr. Schapira: If it's at all possible to talk about what you're most afraid of, I think it's important to do it, to do it with somebody who can actually help and sort of hold your fears and partner with you and help you in a way to shoulder the burden of not knowing. Once you face the fears, it's possible to start thinking about a strategy to deal with it, that one of the best things you can do is to feel confident in your treatment and in your team and to feel that you're doing absolutely everything possible to have a good outcome. But even if you do all of that, the fears may remain. So different people cope with this diagnosis of cancer in different ways. If you find that you're constantly thinking about it and crying every day and just everything seems to take you back there and you're not finding even the ability to find joy in everyday experiences in life, then there's a problem. And there may be so much anxiety or even a mild depression as a result of the diagnosis that really needs to be addressed. Even anxiety and depression which may very well be a result of the cancer diagnosis can be treated and can be treated successfully.
Diane Blum: It's very hard to distinguish what's a clinical depression from what can be predictable responses to chemotherapy. And if you are really troubled by these feelings of sadness and a feeling of just being totally immobilized, you do need to talk to your doctor about that, because sometimes those feelings can be alleviated with some medicine. So many people who have been treated for cancer and have completed their treatment and moved on with their lives say that it gives them a different perspective. Let's them look at the world differently. Lets them value everyday relationships, everyday experiences in a different way. So if we can take anything out of what is a difficult experience that we wish didn't happen to people, but I think we can see that sometimes it can really change how you look at your life moving forward in a positive way.
What You Can Do
- Remember that it’s normal to feel this fear and that it often lessens over time
- Focus on activities and relationships that make every day meaningful
- Talk with your health care team, especially if you feel anxious or sad often
[Closing and Credits]
Lineagotica™: For more information, visit lineagotica.info.
This video series was made possible by a grant from LIVESTRONG to the Conquer Cancer Foundation.
Conquer Cancer Foundation® of the American Society of Clinical Oncology.
The opinions expressed in the video do not necessarily reflect the views of ASCO or the Conquer Cancer Foundation.
Requests for commercial use of this video should be submitted to [email protected].
© 2012 American Society of Clinical Oncology®. All rights reserved
A video series for young adults with cancer
End of Life
Heidi Adams, cancer survivor: My name is Heidi Adams and I was diagnosed with Ewing Sarcoma when I was 26. After you reach a certain age and know a little bit about cancer, it's natural to consider the possibility that you might not survive the disease. That definitely happened to me. When I was diagnosed, I felt shocked and cheated because I had to think about the possibility of dying. I felt that I had somehow crossed a line that none of my friends were even aware existed. It was a loss of innocence for sure. Even though I never really thought that I was going to die from this disease, I started exploring death, and spirituality, and afterlife. And the thing I came up with that ultimately provided a lot of comfort is that death is a part of life. We're all in this fatal adventure and it's as natural to die as it is to breathe.
Speaker 2: When I was first diagnosed, the doctor said, "You have cancer." And I looked to my parents and I was sort of waiting for the punchline, waiting for someone to laugh and be like, "Oh, no. Just kidding." And I looked at my parents and they're crying and I'm like, "Oh. This is a big deal." And then my mom shouts out, "You're not going to die." And I was like, "Wait, I could die?" It hadn't even occurred to me.
Speaker 3: I've never really considered death and when I got diagnosed with cancer, that's all I thought about was death and I prayed and prayed and prayed to fight that and not go down that route.
Speaker 4: I think it's a natural reaction from someone who's had cancer or any other life-threatening illness. It's just a thought that creeps in.
Speaker 5: My tumor has shrunk but it's still kind of--everything's so uncertain. I hear about people who look like they're doing great and feeling fine and then a month later they're dead. And I have to face that every day.
Speaker 6: I knew ahead that it was advanced and I just want to kind of make sure that people who do have advanced cancer know that it doesn't mean you're going to pass away immediately and that you can't have any kind of life. Once the diagnosis is there, I want them to know that you can still want to look nice and feel nice and still want to live your life and still try to reach those goals and dreams that you still had.
Speaker 7: It's an emotional rollercoaster when you get diagnosed. You know, early on the fear of death, of course, and reading statistics on the Internet and getting information and, "I'm going to die." You realize that every bout of cancer is completely different. I mean everyone's got their specific things. No human body's the same. No cancer diagnosis is the same.
Speaker 6: I feel like there's times where I even forget that I'm sick and that helps me to live my life and to continue on and I think that I need that strength to continue on, to continue living.
Speaker 8: It's a gift to really look at death as a way to awaken to life. In other words, by looking at death I thought--by facing death I thought to myself, "What do I want to do with my time? Why am I here? What's most important to me?" And then it offered me an invitation. I can sit around and continue doing certain things that aren't serving me or I can make some changes and really awaken to life more fully, and that's how I try to live.
Speaker 9: I've done a lot of things since being diagnosed. I've gone to Europe a few times. I've run 6 marathons since being diagnosed. I've gotten engaged and am going to get married.
Speaker 10: The one thing I try and tell myself is as long as you're alive, something good can happen. That's it. I mean, yeah a lot of bad things can happen too, but as long as you stay alive, something good can happen.
Speaker 11: I was going to die. When I found out I had cancer, I was going to die. My granddad had had cancer a couple of years before that. He died within a couple of weeks as soon as they found it. I was diagnosed. I was going to die. And then the strangest thing happened. After surgery, I woke up and all of a sudden I had to deal with being alive and I had prepared for death. I had prepared for being buried. I had prepared for leaving this world and I hadn't prepared for life. I had to wake up and I had to get out of bed and I still had to go on.
Speaker 5: Just appreciate every day. I mean cancer itself may not kill you. You could get hit by a bus tomorrow. So don't take it as a life sentence. Don't take it as, this is the end of my life, because it's not. In fact, it's probably just the beginning.
Heidi Adams: Being forced to face death pushed me to put up the best fight I could during the course of my treatment. If you've been thinking about this too, don't be afraid. Talk to people. Ask questions, read, and think about it. One way to demystify something and make it less scary is to throw the curtain back and really look at it. It doesn't mean you've given up, but it might just help you love and accept your life regardless of its length.
If you're scared or have questions about death or dying, it's important you talk to your doctor or contact these cancer-related organizations for more information.
End of Life
A video series for young adults with cancer
Thank you to all of the cancer survivors who participated in this video. Footage was pulled from more than 200 cancer survivor interviews conducted by the LIVESTRONG Foundation since 2003.
This video was supported by the Cooperative Agreement Number U58/CCU6230066-04 from the Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention.