For Any Cancer Diagnosis
I'm worried that a few side effects from my cancer treatment won't go away. Do you know how long they might last?A.
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.
What support services should a cancer survivor look for after finishing treatment?A.
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.
I've finished treatment and now I feel like I'm on my own. Are there things I should be doing?A.
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 LiveSTRONG Foundation 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:
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?A.
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.
I'm a cancer survivor and am wondering if I should seek counseling now that my treatment has ended?A.
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.
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?A.
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 dietitian: 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.
I finished treatment and would like information on fertility issues and cancer survivors. Can you help me?A.
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 comprehensive information on the main causes and options for cancer-related infertility for women and for men. 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 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 provides information on fertility options at all stages of cancer treatment to help you make an informed decision based on your individual needs. You can also find information to help deal with the financial, practical and legal aspects of infertility.
I would love to go to a spa or retreat after my last treatment, but what I am finding is extremely expensive. After a loss of income for a year and medical expenses, there's not much left for anything. Is there a retreat or spa like this for cancer survivors? Maybe a place that insurance would help cover costs?A.
There is so much information available about retreats and spa-like getaways that include massage and yoga as part of their healing package. Searching for “retreat cancer patients” brought up numerous websites that have lists about retreats and weekend getaways all across the country. Many of them seemed free or offered at a greatly discounted rate. In a time when financial assistance is often few and far between, the “in-kind” assistance seems to be available and donated in abundance.
Here are resources for finding retreats for cancer survivors:
- Foundation for Women’s Cancer’s Retreats for Women with Cancer and Their Families
- Cancer.Net’s Camps and Retreats for Families and Children Affected by Cancer
Here are a few examples of possible retreats:
- Casting for Recovery offers free fly-fishing weekends in 33 states for female breast cancer survivors. Founded on the principles that the natural world is a healing force, you don’t have to know how – or even like – to fly fish; the main goal is bonding. The retreats are held from April to November and also incorporate counseling and educational services.
- Mary’s Place by the Sea is a quiet place of retreat and healing in Ocean Grove, NJ with massage, reiki, guided meditation, nutritional counseling, cooking classes, counseling and yoga.
- Stowe Weekend of Hope is a three-day gathering held each spring in the resort town of Stowe, VT, for both male and female cancer survivors and their families. Activities include educational sessions with top doctors presenting current medical research in all areas of cancer treatments, workshops by cancer type, movement and exercise classes, a three-mile run and more.
- Little Pink Houses provides free week-long beach retreats in private homes in North and South Carolina for breast cancer patients and their immediate families.
In terms of insurance covering spa or wellness treatments, rehabilitation and medical massage clinics will sometimes accept various types of insurance for medically necessary massage and physical therapy. Spa and massage treatments can offer a host of physical and mental benefits which are continuously being researched, and medical professionals are viewing them more and more as a way of supporting the whole patient. These types of treatments can improve the outlook people have about their treatments, enhance body awareness, reduce pain and swelling, improve lymph node drainage and minimize the effects of radiation and chemotherapy treatments. Many spas have specialized oncology massage therapists who have experience working with cancer patients and know how to tailor treatments. As you’re researching spas, keep in mind the products they use and the level of hygiene the spa offers. As some products can irritate your skin and you may be more susceptible to infections, it’s important to only visit spas and retreats that practice proper cleaning and disinfection schedules.
How can a cancer survivor deal with fear of recurrence?A.
Fear of recurrence is very common and understandable in the context of your recent cancer experience. There are several ways in which you can manage this anxiety in order to live a full and meaningful life:
- Ask your oncologist about chances of recurrence, regular tests to schedule to check for signs that the cancer may have returned and steps you can take to increase the chances that it will not.
- Assess your life and look at your daily routine. Are there things you could improve about your diet? Ways to increase your physical activity? Things you can do to help you relax? To sleep better?
- Read our publication After Treatment Ends: Tools for the Adult Cancer Survivor.
- Listen to our podcast, Communicating with Your Health Care Team After Treatment: Making the Most of Your Visit.
- Consider talking to a professional counselor, such as an oncology social worker at CancerCare who can suggest ways to manage your anxiety and help you process your feelings.
- Many cancer survivors also find support groups very helpful, as they can talk to other survivors with similar worries and fears and learn new coping skills. View support groups at CancerCare.
- Listen to our podcast Fear of Recurrence and Late Effects: Living with Uncertainty.
- Talk to your trusted friends or family members about your concerns. Even if there are just one or two people with whom you feel comfortable sharing your fears, this can be a powerful way to get some relief from your anxiety.
- Make sure you continue to engage in hobbies and socialize with your friends is an essential and healthy form of distraction.
- Listen to our podcast Survivors Too: Communicating With and Among Family, Friends and Loved Ones.
- Reflect on what makes your life meaningful, both before and after cancer. What values and activities are important to you? How can you continue to honor those things you hold dear? Focusing on the bigger picture can help minimize the anxiety and remind you what you can do in the here-and-now to live a full life.
- Read our publication Strengthening the Spirit.
- Listen to our podcast Finding Hope and Meaning After Treatment.
Can taste buds still be affected two years after completing chemo treatments?A.
Experiencing lingering side effects after cancer treatment is over is common and taste buds can be part of that reaction. These side effects can be especially frustrating when you expect to feel better as soon as treatment is over and especially when you are expected, by others, to return to your pre-treatment self. It is such an important quality of life issue.
Some clients have said that, over time, their taste buds returned to normal. Other people said that, over time, their taste buds had returned but were different. Share your concerns and questions about continuing taste bud side effects with your oncologist, your medical team and what can be done to address them. Also, consider speaking with the oncology nursing staff. They often have recommendations that are practical and manageable.
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 and nurse. In the log, note what the foods are and how they taste differently. Also note the times of day in your log. This may help the oncology team guide you in figuring out solutions for you.
You may also want to check out Cook For Your Life, an online food and recipe site that assists people who are in, or who have finished treatment, with foods and recipes that might be more palatable, considering the changes in tastes. Imerman Angels is a peer support program that team up people who have gone through similar circumstances. You may want to contact them to ask for a “buddy” to discuss these issues with.
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 (800-813-4673).
I am just getting back on my feet after treatment. I want to go back to work, but would like to go to school for an advanced certificate or degree. Is there any financial aid specifically for new survivors?A.
Congratulations on finishing your treatment and please let me be part of celebrating this huge accomplishment! Life after treatment can be a time of renewed focus, greater creativity and new commitment to educational opportunities. Priorities shift and the way you decide where and with whom you devote your time is different than before you were diagnosed. This can be both exciting and scary, as the realization that you are in fact a different person than before treatment and that returning to the “way things were” is not entirely possible or realistic. The financial strain from cancer treatment can leave your bank account unable to accommodate this dedication to personal advancement and renewal. I wish you continued success and excitement as you learn more about yourself and discover how to advocate for what you need now. Thankfully, there are several resources out there and many organizations that have compiled a list of the different types of scholarships and financial assistance.
One good place to start is The Smart Student Guide to Financial Aid.
The same organization that may have brought you discounted prescriptions, NeedyMeds, also offers a list of scholarship resources.
The Jackie Spellman Scholarship Foundation and the Michael A. Hunter Memorial Scholarship offer assistance for people pursuing graduate studies who have been affected by leukemia or lymphoma. They offer scholarships ranging between $1000 and $3000.
Additional resources include:
For those still undergoing treatment but would like to continue their higher education, the National Collegiate Cancer Foundation offers annual nonrenewable $1000 scholarships for college students whose lives have been impacted by cancer.
The Patient Advocate Foundation has a Scholarships for Survivors Program.
The SAMFund has a Surviving and Moving Forward scholarship program for cancer survivors between the ages of 17 and 35 living in the United States.
The Ulman Cancer Fund has a National College Scholarship Program for young adult cancer survivors and young adults impacted by cancer.
For Lung Cancer
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?A.
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. 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 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.