For Any Cancer Diagnosis
Q. I'm worried that a few side effects from my cancer treatment won't go away. Do you know how long they might last?
Experiencing lingering side effects after cancer treatment is over is common. These side effects can be especially frustrating when you expect to feel better as soon as treatment is over. Most side effects gradually lessen with time as your body recovers from treatment. Share your concerns and questions about continuing side effects with your medical team and what can be done to address them. I’d recommend keeping a detailed daily log of the side effects you are experiencing—this makes it easier to report details to your doctor. Our Connect® Education Workshop, Communicating with Your Health Care Team After Treatment: Making the Most of Your Visit can help you prepare for your appointments.
Connecting with others in a support group for people who are post-treatment can be helpful. A support group is a place to share tips and ways of coping with other survivors who might be experiencing similar lingering side effects. We offer support groups over the telephone, online and in person (New York City area). You can also speak with a social worker who will locate groups in your area.
Finally, read our publications to learn ways to cope with side effects.
Q. What support services should a cancer survivor look for after finishing treatment?
A variety of physical and emotional responses can come up after treatment ends. Reaching out for support is a very healthy way of taking care of yourself. Engaging in certain activities can help you to regain some sense of control and be an active participant in your recovery.
Take a moment to think about the people who have been helpful to you. Your “team” includes the doctors, nurses, social workers, alternative health practitioners, other survivors and the family and friends who surround you. Defining and understanding the distinct role that each person plays is beneficial so you know where to turn when you need help. Who can answer medical questions? What programs exist to help financially? Who do you approach when you need a good listener?
Keep in mind the following services as you evaluate your current needs:
- Peer support, through support groups or survivor matching programs, allows you the opportunity to learn from others and find emotional support.
- Individual counseling provides a space to process the many complex feelings that come with cancer survivorship.
- Financial assistance programs are available to help with some medically related expenses such as co-pays for medication, as well as out of pocket costs associated with transportation.
- Alternative therapies such as Reiki, acupuncture or massage can help you alleviate side effects such as fatigue and pain. Relaxation techniques may also help you manage feelings of anxiety.
Taking inventory of available supportive services is an important first step to take. Think about what services would be a good fit for you given your current needs. If it’s not clear or you are having trouble finding local services, speak with an oncology social worker who can help guide you.
Q. I've finished treatment and now I feel like I'm on my own. Are there things I should be doing?
Finishing cancer treatment often brings mixed feelings. A sense of relief and feelings of accomplishment are normal; so, too, is uncertainty about the future. Your instinct to prepare in some way for your survivorship is a good one. Here are some steps you can take to keep both your mind and your body healthy as you continue to work with your medical team.
Ask your doctor for a Treatment Summary. This should include:
- Your type(s) of cancer with the date and stage at diagnosis
- Types of treatment received (surgery, chemotherapy drugs, radiation doses and tests performed)
- Complications experienced (side effects, transfusions, hospitalizations)
- Other services used (physical therapy, acupuncture, herbal)
Discuss with your doctor what your Follow-Up Plan will be. This should include:
- Future schedule of visits (time and date)
- Who will deliver follow-up care (and where)
- Tests that will be done and why (surveillance and preventative)
- Assessment and treatment for long- or late-term effects (e.g., lymphedema, depression, pain)
- Evaluation of current health behaviors and promotion of healthy life style
There are great resources available that can help you organize all of the above information. The Lance Armstrong Foundation (LAF) has developed worksheets and a Survivorship Notebook. The National Coalition for Cancer Survivorship (NCCS) provides information about Living Beyond Cancer. And for childhood cancer survivors, the National Children’s Cancer Society offers information in managing long-term effects from treatment.
You mentioned feeling “on your own” now that your treatment is complete. This is a common feeling when treatment ends, and it’s good to know about the different types of support available to you:
- Professional support provides you with information, resources and counseling
- Peer-to-Peer support reduces your sense of isolation and helps you connect with others who share similar concerns
Finally, you might find it useful to listen to these Connect® Education Workshops:
Q. I've been trying to get back to normal after ending treatment, but I'm having some trouble. Everyone is happy that I'm back to work, but I'm not sure I am. Why am I feeling this way and what should I do?
With the end of treatment often comes the expectation that it’s time for celebration, and for things to go back to how they used to be. Yet, it’s common for many people to feel lost, uncertain and confused about how to move forward. Friends and family usually mean well, but they might not be fully aware of the feelings that can surface after treatment is over.
Often times after treatment ends, people find themselves reevaluating their lives. This could mean reassessing relationships or professional goals, and discovering new ways of finding meaning and fulfillment. Moreover, you might not be fully ready to be back to work, whether emotionally or physically.
Newly diagnosed patients can be so busy learning about their diagnosis, working with their medical team, and going through treatment, that the emotional impact of the diagnosis is not fully felt until treatment has ended. Understanding what life after cancer means to you can take time. This process may involve reflecting on what you’ve been through, identifying changes you might want to make in your life and recognizing what you’ve learned about yourself.
Remember that support groups are not only for people in active treatment. You might find the feelings you’re having right now are better understood by people who’ve “been there” and are currently facing similar issues such as fear of recurrence, living with uncertainty, lingering side effects, and going back to work. You might also find individual counseling helpful.
If you have concerns about how your feelings, both emotional and physical, are affecting your daily life, speak with your doctor or a counselor for support and additional guidance.
Q. I'm a cancer survivor and am wondering if I should seek counseling now that my treatment has ended?
The decision to pursue counseling is always very personal. As a post-treatment cancer survivor, you may be dealing with concerns that are different than those you had at the time of your initial diagnosis. The post-treatment phase may be a time to reevaluate purpose, direction, and priorities. We know that many cancer survivors have fears of recurrence and other anxieties that friends and loved ones may not fully understand. Speaking with a counselor can help.
CancerCare offers a number of ways to get support including counseling and support groups. A support group provides a safe place for people coping with similar issues to share and learn from each other. Many people find the opportunity to relate to others in this way enormously helpful and powerful.
You may also want to listen to our Connect Education Workshop, Managing the Stress of Survivorship.
Going forward, keep in mind that taking care of yourself emotionally is equally as important as looking after your physical needs.
Q. How can a cancer survivor deal with fear of recurrence?
Many feelings can come up once cancer treatment ends. On the one hand, it is a time of hope and relief, but it can also be a time of fear and anxiety. Fear of recurrence is not at all uncommon for cancer survivors and you are not alone. Take control of the things you are able to. Everyone has their own way of coping, but here are a few practical suggestions:
- Take care of yourself by making healthy choices which may include increasing physical activity and adjusting your diet. Engage in activities such as yoga, meditation, or other relaxation techniques.
- Seek out support. Speaking with others in a support group can help relieve anxiety.
- Explore spiritual connections. Read our fact sheet, Strengthening the Spirit.
- Stay active in your follow-up care by asking specific questions.
Questions to ask your doctor about recurrence:
- What is the likelihood that my cancer may return?
- Are there any steps I can take to keep it from returning?
- How can I know if it’s back? Are there things I should I look for?
- What tests will I have that could detect a recurrence? How often should I be tested?
Other resources include:
- CancerCare’s podcast, Finding Hope and Meaning After Treatment
- The National Coalition for Cancer Survivorship’s Cancer Survival Toolbox
Finally, expressing your feelings to a counselor one-on-one in a nurturing environment can be helpful. The process of openly coping with emotions helps many people feel less anxious. You may also join a post-treatment support group to learn how others cope with fear of recurrence.
Q. How can I find an exercise program that is adjusted for physical limitations I have due to having had cancer? I can't walk like I used to, because I have nerve damage in one leg and I tire easily. I thought yoga or Tai Chi, but I can't do the normal sets. Any ideas what kind of exercise I can do or where I can find modified plans?
Your question identifies one of the most important aspects of cancer survivorship – continued self-care. Exercise improves post-treatment fitness and strengthens your ability, in both mind and body, to cope with the after-effects of cancer.
The first step in starting any exercise program is to consult a doctor, either your oncologist or general practitioner. Ask him/her for a referral to an occupational or physical therapist, who can help you customize an exercise routine based on your age, present fitness level, and any limitations caused by cancer or its treatment. This can help increase your flexibility and bone and muscle strength, which are crucial to improving balance and preventing falls. Some techniques can even be performed sitting or standing. For more information, see our booklet, Caring for Your Bones When You Have Cancer.
Health professionals can also help you find exercise programs in your community, such as yoga, Tai Chi, qigong, and other gentle movement classes that are tailored to cancer survivors. Such classes may also be found at your local YMCA, senior center, or Cancer Support Community. Mind-body techniques (including deep breathing and relaxation exercises) will improve your focus and energy level. Learn more by reading our fact sheet, “Relaxation Techniques and Mind/Body Practices.”
You may also want to see a neurologist to treat the nerve damage, or neuropathy, that is limiting your movement. A neurologist may prescribe medications, acupuncture, or relaxation exercises to relieve your pain and discomfort.
Another way to improve your ability to exercise is to consult a nutritionist or registered dietician: finding a diet tailored to your specific needs can help increase your energy and rebuild your muscles and bones. The American Cancer Society has comprehensive nutrition information for before, during, and after cancer treatment.
Even if you are fatigued and tire easily, start slow. Any exercise is better than none. Consult the American Society of Clinical Oncology for information on how to practice this. Instead of walking for an hour, walk for 5-10 minutes several times a day. Give yourself credit for any exercise you do, and reward yourself when you are able to do more. Remember to celebrate each small success.
Q. I finished treatment and would like information on fertility issues and cancer survivors. Can you help me?
Unfortunately, one potential effect of cancer and cancer treatment is the loss of fertility in both men and women. Depending on cancer type and treatment methods, your age, and other factors, your fertility may be compromised on a temporary or permanent basis. To determine this likelihood and possible solutions, it is important that you talk to your oncologist and a fertility specialist. The American Cancer Society has a comprehensive document on the main causes and options for cancer-related infertility. For women, causes include:
- damage to your eggs caused by certain kinds of chemotherapy
- damage to your ovaries caused by radiation
- removal of the uterus (hysterectomy) or ovaries (oophorectomy)
- hormonal treatments
If you still have a uterus and ovaries, you may still be able to get pregnant. Some medical professionals recommend waiting 6 months before trying, to avoid fertilization of damaged eggs. A doctor specializing in high-risk obstetrics can check that your ovaries are still functioning and that your heart and lungs are strong enough to withstand pregnancy. If you were not able to freeze embryos (cryopreservation) before beginning cancer treatment but you still have your uterus, you may consider:
- getting implanted with donor eggs through IVF (in-vitro fertilization)
- getting implanted with a donor embryo through IVF
For men, infertility may be caused by:
- damage to your sperm cells caused by chemotherapy
- damage to sperm cells caused by radiation
- surgery to remove your testicles or prostate
- hormonal therapies
Some men recover their ability to produce sperm after cancer treatment (maybe a year or later). If you did not freeze your sperm before treatment but you can still produce sperm, you may consider:
- getting your semen analyzed to determine the level of DNA damage to your sperm
LIVESTRONG has a program called Fertile Hope, which provides information on fertility options at all stages of cancer treatment to help you make an informed decision based on your individual needs. Fertile Hope can also provide financial assistance to help you preserve your fertility before cancer treatment begins. You can also search a comprehensive guide of agencies that deal with the financial, practical, legal, and emotional aspects of infertility.
My Oncofertility has a helpful chart that details options for fertility both before and after cancer treatment, as well as comparisons of cost, time, and success rates of the different procedures.
Because of the practical, financial, and emotional toll of fertitlity issues, please consider joining a support community or seeking counseling. CancerCare has face-to-face, telephone, and online support to help you cope with this stress and other survivorship-related concerns.
For Lung Cancer
Q. I'm in remission after having chemotherapy and radiation for small cell lung cancer. I've recently started having a shortness of breath when I'm at rest (doesn't seem to happen at work). Is there anything I can do?
The shortness of breath, or dyspnea, you are experiencing can be uncomfortable and frightening. The more you struggle for air, the harder your lungs work to get oxygen, and the more distressed you feel. It is extremely important to consult a medical professional to find out what might be setting this cycle in motion. Possible causes could be:
- a side effect of chemotherapy or radiation (which may reduce lung capacity)
- anemia, meaning your lungs don’t have enough red blood cells to deliver oxygen throughout your body
- a non-cancer lung condition, like asthma, COPD, or an allergy
- anxiety caused by fears of recurrence, the lasting emotional effects of having had cancer, or other types of stress
Contact the American Lung Association (1-800-LUNGUSA) for information on other possible causes of dyspnea. Depending on its source, a doctor may prescribe a steroidal or anti-anxiety medication, supplements, oxygen, or special exercises. The Lung Cancer Alliance has a very helpful video demonstration of breathing techniques to relieve dyspnea. Progressive relaxation, meditation, and guided imagery can all help reduce stress and anxiety. CancerCare has several Connect Education Workshops that address stress management in cancer survivors including Fear of Recurrence and Late Effects: Living with Uncertainty and Managing the Stress of Survivorship.
To prepare for your doctor’s appointment, keep a record of your breathing problems, with these questions in mind:
- When do you experience shortness of breath?
- When does it feel worst?
- How long does each episode last?
- What is going on around you before, during, and after each episode?
- Does anything make it feel better?
Take your record with you to your appointment. It is very important that a medical professional review your symptoms, especially if you’re also feeling faint and dizzy, if your heart is pounding, or if it’s difficult to breathe even at rest.
CancerCare has information on creating a survivorship care plan that can be used to personalize your post-treatment needs and communicate them to your health care provider.
Don’t be afraid to advocate for yourself so that your medical, emotional, and practical needs are addressed, and your quality of life is maximized.