Rutgers Cancer Institute of New Jersey
195 Little Albany Street
New Brunswick, NJ 08903-2681
The information on this page was adapted by the National Cancer Institute's (NCI) publication "Facing Forward: Life After Cancer Treatment." The entire NCI publication is available online at www.cancer.gov/cancertopics/life-after-treatment.pdf
Some body changes are short-term, and others will last forever. Either way, your looks may be a big concern after treatment. For example, people with ostomies after colon or rectal surgery are sometimes afraid to go out. They may feel ashamed or afraid that others will reject them. They may worry about the idea of having an "accident" in social situations.
Others don't like people being able to see treatment effects such as scars, skin changes, loss of limbs, and changes in weight. Even if your treatment doesn't show, your body changes may trouble you. Feelings of anger and grief are natural. Feeling bad about your body can also lower your sex drive. This loss of or reduction in your sex life may make you feel even worse about yourself.
Changes in the way you look can also be hard for your loved ones, which can be hard on you. Parents and grandparents often worry about how they look to a child or grandchild. They fear that changes in their appearance may scare the child or get in the way of their staying close.
How do you cope with body changes?
You may have changes in your sex life after cancer treatment - many people do. Depending on the cancer you had, these problems may be short-term or longterm. For example, about half of women who have had long-term treatment for breast and reproductive organ cancers and more than half of men treated for prostate cancer report long-term sexual problems. Many cancer survivors say they were not prepared for the changes in their sex lives.
Sexual problems after cancer treatment are often caused by changes to your body - from surgery, chemotherapy, or radiation, or by the effects of certain medicines. Sometimes emotional issues can be the cause of sexual problems. Some examples include anxiety, depression, feelings of guilt about how you got cancer, changes in body image after surgery, and stress between you and your partner. Your past sex life is not related to your current sexual problems.
What types of problems occur? People report these main concerns:
"I knew about the chance of impotence. What I didn't expect was my total loss of interest in sex, which really caused some problems between my wife and me."
Your doctor may be able to help you deal with these problems, but he or she may not bring up the subject. You may have to mention it yourself. If you think you might have trouble getting started, bring this booklet with you.
Often, sexual problems will not get better on their own. To get help with many of these problems, it's important to tell your doctor about any changes in your sex life. Sometimes there can be an underlying medical problem that causes changes, such as:
Other issues you may want to discuss include:
Even for a couple that has been together a long time, staying connected can be a major challenge at first. It may be comforting to learn that very few committed relationships end because of ostomies, scars, or other body changes. Divorce rates are about the same for people with and without a cancer history.
Tell your partner how you feel about your sex life and what you would like to change. You might want to talk about your concerns, your beliefs about why your sex life is the way it is, your feelings, and what would make you feel better.
Approaching it openly avoids blame, stays positive, and gives your partner a better sense of how you are feeling. Here is an example of how you might start your discussion:
"I know it's tough to talk about, but I think we should discuss our sex life. We've only made love a few times lately. I miss being close to you. I worry that my scars might be a problem. Can you tell me how you feel?"
Try to be open minded as you listen to your partner's point of view:
If you're single, body changes and concerns about sex can affect how you feel about dating. As you struggle to accept the changes yourself, you may also worry about how someone else will react to physical things, such as scars or ostomies. Or you may find it awkward to bring up sexual problems or loss of fertility, which can make feeling close even harder.
You may wonder how and when to tell a new person in your life about your cancer and body changes. For some, the fear of being rejected keeps them from seeking the social life they would like to have. Others who choose not to date may face pressure from friends or family to be more sociable. Here are some ideas that can make it easier to get back into social situations:
• Focus on activities that you have time to enjoy, such as taking a class or joining a club.
• Try not to let cancer be an excuse for not dating or trying to meet people.
• Wait until you feel a sense of trust and friendship before telling a new date about your cancer. Practice what you will say to someone if you are worried about how you will handle it. Think about how he or she might react, and be ready with a response.
• Think about dating as a learning process with the goal of having a social life you enjoy. Not every date has to be perfect. If some people reject you (which can happen with or without cancer), you have not failed. Try to remember that not all dates worked out before you had cancer.
"I don't think you ever forget the fact that it could come back."
Just as cancer treatment affects your physical health, it can affect the way you feel, think, and do the things you like to do. It's normal to have many different feelings after treatment ends. Just as you need to take care of your body after treatment, you need to take care of your emotions.
Each person's experience with cancer is different, and the feelings, emotions, and fears that you have are unique. The values you grew up with may affect how you think about and deal with cancer. Some people may feel they have to be strong and protect their friends and families. Others seek support from loved ones or other cancer survivors or turn to their faith to help them cope. Some seek help from counselors and others outside the family, while others don't feel comfortable with this approach.
Whatever you decide, it's important to do what's right for you and try not to compare yourself with others.
Worrying about the cancer coming back is normal, especially during the first year after treatment. This is one of the most common fears people have after cancer treatment. For some, the fear is so strong that they no longer enjoy life, sleep well, eat well, or even go to follow-up visits. "If I get it again, what am I going to do?" one woman said. "I never thought I'd make it through the first time." Others may react in a more positive way. As one survivor put it, "Cancer is just part of life, and we always have hope."
As time goes by, many survivors report that they think about their cancer less often. However, even years after treatment, some events may cause you to become worried. Follow-up visits, symptoms similar to the ones you had before, the illness of a family member, or the anniversary of the date you were diagnosed can trigger concern.
• Be informed. Learning about your cancer, understanding what you can do for your health now, and finding out about the services available to you can give you a greater sense of control. Some studies even suggest that people who are well-informed about their illness and treatment are more likely to follow their treatment plans and recover from cancer more quickly than those who are not.
• Express your feelings of fear, anger, or sadness. People have found that when they express strong feelings like anger or sadness, they're more able to let go of them. Some sort out their feelings by talking to friends or family, other cancer survivors, or a counselor. But even if you prefer not to discuss your cancer with others, you can still sort out your feelings by thinking about them or writing them down.
Look for the positive. Sometimes this means looking for the good even in a bad time or trying to be hopeful instead of thinking the worst. Try to use your energy to focus on wellness and what you can do now to stay as healthy as possible.
• Don't blame yourself for your cancer. Some people believe that they got cancer because of something they did or did not do. Remember, cancer can happen to anyone.
• You don't have to be upbeat all the time. Many people say they want to have the freedom to give in to their feelings sometimes. As one woman said, "When it gets really bad, I just tell my family I'm having a bad cancer day and go upstairs and crawl into bed."
• Find ways to help yourself relax. The exercises in Learning to Relax have been proven to help others and may help you relax when you feel worried.
• Be as active as you can. Getting out of the house and doing something can help you focus on other things besides cancer and the worries it brings.
• Look at what you can control. Some people say that putting their lives in order helps. Being involved in your health care, keeping your appointments, and making changes in your lifestyle are among the things you can control. Even setting a daily schedule can give you a sense of control. And while no one can control every thought, some say that they try not to dwell on the fearful ones
When you were diagnosed, you may have put concerns such as family, work, or finances aside. Now that treatment is over, these issues may begin to resurface.
Many cancer survivors also worry that stress may have played a role in their illness. It's important to remember that the exact cause of many cancers is still unknown. No research shows that stress causes cancer, but we do know that stress can cause other health problems. Finding ways to reduce or control the stress in your life may help you feel better. Devoting time to any activities that make you feel calm or relaxed may help.
Many survivors have found activities like the ones below useful in dealing with their worries after treatment ends. Ask your doctor, nurse, social worker, or local cancer organization about taking part in activities like these.
• Exercise. Exercise is a known way to reduce stress and feel less tense - whether you've had cancer or not. As one man put it, "I can feel down a little bit, and it is a fine line with depression, but when I walk 30 or 45 minutes in the fresh air, I feel like I can take on the world sometimes." See your doctor before making an exercise plan, and be careful not to overdo it. If you can't walk, ask about other types of movement that may be helpful, such as chair exercises or stretching.
• Mind-body methods. Things like meditation or relaxation may help you lower stress by quieting your mind. Try focusing on your breathing or repeating words or phrases to yourself. Other methods include hypnosis, yoga, or imagery.
• Creative outlets. Art, music, or dance gives people the chance to express themselves in different ways. Even people who have never danced, painted, or drawn before have found these activities helpful and fun.
•Sharing personal stories. Telling and hearing stories about living with cancer can help people air their concerns, solve problems, and find meaning in what they've been through. See Joining a Support Group for support group information.
"Is cancer life-threatening? Yes, but why die mad? So I joked about it all the way through, and I think it helped me."
Laughter can help you relax. When you laugh, your brain releases chemicals that produce pleasure and relax your muscles. Even a smile can fight off stressful thoughts. Of course, you may not always feel like laughing, but other people have found that these ideas can help:
• Ask people to send you funny cards.
• Enjoy the funny things children and pets do.
• Watch funny movies or TV shows.
• Listen to comedy tapes or CDs.
• Buy a funny desk calendar.
• Read joke books or check out jokes on the Internet.
• If you don't own a computer, use one at your local library.
You may even find that you can laugh at yourself. "I went by to help a friend this summer, and it was really hot, so I took my wig off," one woman said. "I got ready to go and I couldn't find it. After searching high and low, I found it hanging from her dog's mouth. But I just stuck it on my head and went home. My husband said, 'What happened?' Needless to say that wig has never been the same."
After treatment, you may still feel angry, tense, or sad. For most people, these feelings go away or lessen over time. For some people though, these emotions can become more severe. The painful feelings do not get any better, and they get in the way of daily life. These people may have a medical condition called depression. For some, cancer treatment may have added to this problem by changing the way the brain works.
Talk with your doctor. If your doctor thinks that you suffer from depression, he or she may treat it or refer you to other experts. Many survivors get help from therapists who are experts in both depression and helping people recovering from cancer. Your doctor may also give you medicine to help you feel less tense.
If you find it hard to talk about your feelings, you may want to show your doctor this booklet. It can help you explain what you're going through. Don't feel that you should have to control these feelings on your own. Getting the help you need is important for your life and your health.
If you have any of the following signs for more than 2 weeks, talk to your doctor about treatment. Some symptoms could be due to physical problems, so it's important to be willing to talk about them with your doctor.
• Emotional signs:
• Feelings of worry, anxiety, or sadness that don't go away
• Feeling emotionally numb
• Feeling overwhelmed, out of control, or shaky
• Having a sense of guilt or feeling unworthy
• Feeling helpless or hopeless
• Feeling short-tempered or moody
• Having a hard time concentrating, or feeling scatterbrained
• Crying for long periods of time or many times each day
• Focusing on worries or problems
• Having a hard time getting certain thoughts out of your mind
• Finding it hard to enjoy everyday things, such as food or being with friends
• Finding yourself avoiding situations or things that you know are really harmless
Thinking about hurting or killing yourself
• Body changes:
• Unintended weight gain or loss not due to illness or treatment
• Sleep problems, such as not being able to sleep, having nightmares, or sleeping too much
• Racing heart, dry mouth, increased perspiration, upset stomach, diarrhea
• Physically slowing down
• Fatigue that doesn't go away, headaches, or other aches and pains
Many people find themselves feeling angry about having cancer or about things that happened to them during their diagnosis or treatment. They may have had a bad experience with a health care provider or with an unsupportive friend or relative.
Feeling angry is normal. And sometimes it can motivate you to take action. But hanging on to it can get in the way of taking care of yourself or moving on. If you can, look at what's causing your anger and what you can do to lessen it.
"I went to radiation treatment every day, and the staff became like part of my family. And then when I finished, there was this instant separation, and I really felt a loss."
After treatment, you may miss the support you got from your health care team. You may feel as if your safety net has been pulled away and that you get less attention and support from health care providers now that treatment is over. Feelings like these are normal any time your regular contact with people who mean a lot to you comes to an end.
It's also normal to feel somewhat cut off from other people - even family and friends - after cancer treatment. Often, friends and family want to help, but they don't know how. Others may be scared of the disease. You may also feel that only others who have had cancer can understand your feelings.
What can you do to make yourself feel better? Try to think about how you could replace the emotional support you used to receive from your health care team, such as:
• Asking one of your nurses or doctors if you could call sometimes. This could help you stay connected and help you feel less alone. Even just knowing you can call them may help.
• Finding support services offered over the phone or Internet.
• Finding new sources of support for your recovery. Friends, family, other cancer survivors, and clergy members are a few ideas.
• Joining a cancer support group. People who have had cancer meet in groups to talk about their feelings and concerns. Besides sharing their own stories, they hear what others have gone through and how other people have dealt with the same problems they are facing. A support group may also help members of your family cope with their concerns.
"I could feel myself getting down, and I joined this group and we have a great time. We cry, we laugh, we carry on."
Support groups can have many benefits. Even though a lot of people receive support from friends and family, the number one reason they join a support group is to be with others who have had similar cancer experiences. Some research shows that joining a support group improves quality of life and enhances survival.
Support groups can:
• Give you a chance to talk about your feelings and work through them
• Help you deal with practical problems, such as problems at work or school
• Help you cope with side effects of treatment
There are many different types of support groups. Some may be for one type of cancer only, while others may be open to those with any cancer. Some may be for women or for men only. Support groups may be led by health professionals or fellow cancer survivors.
Support groups aren't just for people who have had cancer. Support groups can be helpful for children or family members of survivors. These groups focus on family concerns such as role changes, relationship changes, financial worries, and how to support the person who had cancer. Some groups include both cancer survivors and family members.
Not only do support groups meet in person, they also meet online. Internet support groups can be a big help to people with computers who live in rural areas or who have trouble getting to meetings. Some Internet groups are sponsored by cancer organizations, while others are not monitored. With informal chat groups, you can seek support at any time of the day or night. While these online groups can provide valuable emotional support, they may not always offer correct medical information. Be careful about any cancer information you get from the Internet, and check with your doctor before making any changes that are based on what you read.
A support group may not be right for everyone. For some people, hearing about others' problems can make them feel worse. Or you may find that your need for a support group changes over time.
If you are thinking about joining a support group, here are some questions you may want to ask the group's contact person:
• How large is the group?
• Who attends (survivors, family members, types of cancer, age range)?
• How long are the meetings?
• How often does the group meet?
• How long has the group been together?
• Who leads the meetings - a professional or a survivor?
• What is the format of the meetings?
• Is the main purpose to share feelings, or do people also offer tips to solve common problems?
• If I go, can I just sit and listen?
Before joining a group, here are questions you may want to ask yourself:
• Am I comfortable talking about personal issues?
• Do I have something to offer to the group?
• What do I hope to gain by joining a group?
Support groups vary greatly, and if you have one bad experience, it doesn't mean support groups are not a good option for you. You may also want to find another cancer survivor with whom you can discuss your cancer experience. Many organizations can pair you with someone who had your type of cancer and is close to your age and background.
The Association of Cancer Online Resources (ACOR) offers access to mailing lists that provide support and information to those affected by cancer and related disorders. The ACOR mailing lists are a group of free, unmoderated discussion lists for patients, family, friends, researchers, and physicians to discuss clinical and other issues and advances pertaining to all forms of cancer. Learn more online at www.acor.org.
"After treatment for breast cancer, I knew my life had changed forever. Nothing could ever be the same. I was very sad at my losses, but I felt I had been given the gift of a new life."
Survivors often express the need to understand what having had cancer means to their lives now. In fact, many find that cancer causes them to look at life in new ways. They may reflect on spirituality, the purpose of life, and what they value most.
These changes can be very positive. Many report feeling lucky or blessed to have survived treatment and take new joy in each day. For some, the meaning of their illness becomes clear only after they have been living with cancer for a long time; for others, the meaning changes over time. It's also common to view the cancer experience both negatively and positively at the same time.
Often, people make changes in their lives to reflect what matters most to them now. You might spend more time with your loved ones, place less focus on your job, or enjoy the pleasures of nature. You might also find that going through a crisis like cancer gives you renewed strength.
"I feel good that I've found ways to cope," one colon cancer survivor said. "I also feel better able to handle any future problems that might come up. I have strength that I didn't know I had."
Having a serious illness can affect your spiritual outlook, regardless of whether you feel connected to traditional religious beliefs. After treatment, you and your loved ones may struggle to understand why cancer has entered your lives. You may wonder why you had to endure such a trial in your life.
Cancer survivors often report that they look at their faith or spirituality in a new way. For some, their faith may get stronger or seem more vital. Others may question their faith and wonder about the meaning of life or their purpose in it. Many say they have a new focus on the present and try to live each day to the fullest.
Many survivors have found that their faith, religion, or sense of spirituality is a source of strength. They say that through their faith, they have been able to find meaning in their lives and make sense of their cancer experience. Faith or religion can also be a way for survivors to connect with others in their community who may share similar experiences or outlooks or who can provide support. Studies have also shown that for some, religion can be an important part of both coping with and recovering from cancer.
The way cancer affects faith or spirituality is different for everyone. It's common to question your beliefs after cancer. These questions can be difficult, but for some, seeking answers and searching for personal meaning in spirituality helps them cope.
Read uplifting stories about the human spirit.
Pray or meditate to help you gain perspective.
Take part in community or social gatherings for your own support and to support others.
Talk with others who have had similar experiences.
Find resources at a place of worship for people dealing with chronic illnesses like cancer.
How can you find faith-based support in your community? Here are some ideas that have helped other cancer survivors:
• Contact a religious or spiritual leader in your community. Most have been trained in counseling people with major illnesses.
• Contact the chaplain at your local hospital or treatment facility. Most hospitals have a staff chaplain who can provide support to people of different faiths and religions, as well as people who do not consider themselves religious at all. These chaplains have also been trained to provide spiritual support to patients and families in crisis.
• Talk with your hospital, health care team, or social worker. They may know about faith-based organizations in your community that provide specialized services for cancer survivors.
• Assess your life. Some survivors say their cancer gave them a wake-up call and a second chance to make life what they want it to be. Ask yourself: do your roles in your family fulfill you, or are you doing what people expect of you? What are things you've always wanted to try? Are you happy in your job, or are you just used to it?
• Seek spiritual support. A trusted clergy member or professional counselor may be able to help you with life questions.
• Keep a journal. Write down your thoughts about what gives meaning to your life now.
• Think about helping others who have had cancer. For some, reaching out and helping others helps them find meaning. Others want to get cancer out of their minds and prefer to focus their energy in other ways. If you want to help, many local and national cancer groups need volunteers. Or you may prefer to reach out to people you know and spread the word through family and friends.
• Think about taking part in a research study. Research studies are trying to identify the effects of cancer and its treatment on survivors. Joining a research study is always voluntary, and it could benefit both you and others.