Cancer and its treatment can change how your body looks, feels, and performs. In these two “Moving Forward” videos from ASCO and the LIVESTRONG Foundation, learn more about coping with such changes from medical experts and young adult survivors.
“Moving Forward” Video Series for Young Adults with Cancer
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Cancer.Net® A Patient Education Series for Young Adults with Cancer
ASCO® American Society of Clinical Oncology
Julie Gralow, MD; Member, American Society of Clinical Oncology: There are a lot of body changes that can happen when you undergo cancer treatment. Probably the most obvious that people know about is hair loss that can happen with chemotherapy and planning for that in advance, having some idea of how you want to manage that is going to be very helpful.
Lidia Schapira, MD; Member, American Society of Clinical Oncology: Many of my patients feel very badly when they losing hair perhaps while they're getting chemotherapy and although they know that grows back it's just a real shock to see themselves looking so different. So there is a whole range of responses based on the actual physical challenge I think the first and most important thing is to learn to accept the change, perhaps to get some help getting over some of the initial discomfort in looking at yourself, accepting that, and basically trying to love yourself back. And then with time many of these things get better.
Dr. Gralow: But one of the most profound body changes is actually the tiredness and fatigue that can go along with all the cancer treatments and that can be unexpected for a lot of patients. There are lots of things you can do to help with that but knowing in advance that this might happen and preparing in advance can really help you deal with it the best.
Dr. Gralow: There are a lot of body changes that surgery can cause when we're using surgery to treat a cancer one of the most obvious ones is with a mastectomy, that you lose your breast. Some patients with sarcomas need to have a limb removed. Almost every surgery causes a scar of some kind. Some of those scars are more external and visible but some other scars are internal and that still causes body changes that we have to deal with.
Dr. Schapira: One of the most important things to remember is your doctor is not a mind reader and that it's really important to be clear and frank and open and talk about your concerns. The concerns can be emotional but they can very well be physical as well so if you feel that as a result of the cancer or cancer treatment you're not functioning well, either because you're not sleeping well, you can't remember things, you can't walk very well, or you feel that you are troubled by the way your body looks or moves, it's important to talk to your doctor. It's very likely that there is somebody on the team, somebody in your community who can actually help, who can listen, give you a program and help you get better and achieve the best possible function.
Dr. Gralow: My recommendations for how to deal with the body changes are first of all, ask questions in advance and understand what body changes are possible or probable as you go through your treatment. Ask, maybe, if it's helpful, to talk with others who have gone through this before you maybe a therapist or someone to help you deal with the loss, the grieving, that can go along with some of these body changes that are more permanent, could be helpful.
Dr. Gralow: So thinking in advance about how you want to share your story, who you want to tell, what you want say, is going to be helpful because people will stop you if they see some visible scars are hair loss or some obvious signs that you're undergoing cancer treatment. Usually they have a good heart, you know, they're thinking about you, they want to try to help. But sometimes it's just not a good time and place to talk about it, so having some key words, or just feeling comfortable saying, "this is private for me right now, I'd prefer not to talk about it," just kinda thinking about in advance can be really helpful so that you're strong and you know what to say when people approach you.
Dr. Schapira: You don't have to do this alone. There are many professionals and many services there to help with either rehabilitation for a body part that's not working so well, recovery of function after you've become, perhaps, out of shape or de-conditioned as a result of your cancer treatment, or perhaps learning to live with a side effect that you didn't anticipate, perhaps pain in your legs, or the loss of a sense a balance. So whether it's small or big whatever happened as a result of having had cancer or cancer treatment can be helped and I think it's important to have the right referral to either a physical therapist or a rehabilitation program that will help you overcome those problems and get you to function as well as you possibly can.
What You Can Do
- Talk with your doctor about what you may expect
- Ask for help in adjusting both physically and emotionally
- Prepare ahead of time how you’ll share your story with others
[Closing and Credits]
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This video series was made possible by a grant from LIVESTRONG to the Conquer Cancer Foundation.
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A Video Series for Young Adults With Cancer
Allan Goldberg, cancer survivor: My name is Allan Goldberg and, I was diagnosed with Rhabdomyosarcoma when I was 12 and again when I was 39. When they told me I had cancer, I went through all the emotions. As young adults, we're obviously very concerned about our image. Let's just say, being bald was not the look I was going for. The last thing you want to do is to be different from your friends. Losing your hair is the most obvious side-effect of cancer treatment. But there are other ugly little secrets that people don't tell you about. Some people gain weight. Some people lose weight. And I know people who have scars, skin problems, swelling and a lot of other physical issues.
Speaker 2: I had a lot of skin burns which you don't-- you aren't prepared for that. Like on the fingers, on your feet.
Speaker 3: They removed my bladder and my ovaries and part of my urethra.
Speaker 4: I couldn't walk. After the second time, I couldn't walk for about a year and a half. I was in a wheelchair. Couldn't feel anything from the waist down.
Speaker 5: Well at first, I was pretty horrified because right when you get the surgery, you kind of look like Frankenstein's monster. And it was the springtime and I was wearing turtlenecks because it's just this bright red, long scar across your neck.
Speaker 6: I have actually a multitude of scars because of all the biopsies and everything. The catheter in my chest. The biggest scar runs from just above my knee to almost at my ankle.
Speaker 7: I looked really different because I lost a lot of weight to begin with. And then I gained a lot of weight due to the drugs that I was taking. So my head kind of looked like a football.
Speaker 8: I was in the prime of my life and I lost my hair. I had a bilateral mastectomy. My body completely changed.
Speaker 9: I responded really strongly to my new scar right away. I actually couldn't look at it for probably two, three weeks after my surgery. I think because it felt really foreign to me. It felt like it wasn't representative of who I was as a person. And it felt like it wasn't part of my body yet.
Speaker 10: I'm always aware of it. I always know that people are noticing it because so many people have asked me about it. You walk into a room and you just assume that people see it.
Speaker 9: I think that after I decided that it was okay and that I was going to embrace it in uncertain terms, it wasn't long after that that I started being pretty flamboyant about it in public, and wearing skirts and wearing shorts and seeing it as something that made me different and special and not different and weird.
Speaker 11: There's this popular notion that, "Oh, you're an amputee. You can't do certain things." I was like, "No. I know you can because I've seen other people that have done it. I've seen people that have run marathons and I've seen people that have done Iron Mans, and it's not a disability." Anything that you want to do can be done. So I thought, "Well, I'm going to prove that."
Speaker 10: It's quite a big scar. And I would never try to get it fixed, because that's who I am. And it means so much to me that I went through that experience. And it's also a good reminder to myself, every time I look in the mirror and I see it, I just think to myself how far I've come, what I've gone through, that I should be so proud of who I am.
Allan Goldberg: Going through cancer treatment as a young adult, I really had to get to a place where I felt good about what the medicine was doing inside my body, rather than ashamed of how it was making me look. Dealing with changes to your body at a young age really blows. I know it's hard, but when you look in the mirror and see your hair falling out, it's an outward sign that you're fighting the cancer. Feel good about that, and talk to people about your feelings. Find a friend who's going through the same thing and laugh about it if you can. Think of this time in your life as an opportunity to learn that being a survivor is your badge of courage. If you have questions about changes to your body, it is important that you talk to your doctor, or contact these cancer-related organizations for more information.
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.