Survivorship

Completing cancer treatment is an emotional time that can also leave you wondering: What happens next? Where do I go from here?

The answer is different for each person as we are all unique and individual. Some people return to life as normal before the diagnosis of cancer, while others may face changes from their experience.  The challenge for every survivor is figuring out how to return to everyday life while adjusting to the effects of the disease and treatment received.

Your healthcare team at Southern Cancer Center is dedicated to assist during this time of transition by helping to recognize these challenges and providing resources and support. The information provided in this booklet was designed with you in mind, to help survivors and their families and friends prepare for life after cancer treatment.

Resources

You can find more information on supportive services and cancer survivorship by visiting any of the following websites:

www.cancer.org
www.cancer.gov
www.canceradvocacy.org
www.cancercare.org
www.cancer.net
www.cancersupportcommunity.org
www.livestrong.org
www.patientadvocate.org
www.survivorshipatoz.org

What is Survivorship?

Survivorship can mean different things to each individual, but it generally describes the process of living with, through and beyond cancer. According to this definition, cancer survivorship begins at diagnosis and includes people who continue to receive treatment to either reduce the risk of cancer coming back or to manage chronic disease. Others may view survivorship as having no disease after treatment. No matter how it is defined, survivorship is unique for every person. Everyone has to find their own means of coping and support to navigate the changes and challenges that occur as a result of living with cancer.

The effectiveness of cancer treatment continues to improve due to ongoing advances in medical research. As a result, the number of people with a history of cancer in the United States has increased dramatically, from 3 million in 1971 to close to 15 million today.  As more people are surviving cancer, how long a person lives is no longer the only focus. Importance is placed, rather, on how well survivors are able to live after treatment.

 

Follow-Up Care

Once you complete your cancer treatment, your doctor will continue to monitor your recovery, manage any lingering side effects and follow to make sure the cancer has not returned. Your follow-up care plan may include regular visits for physical examination, laboratory and/or imaging tests during the coming months and years.

Your healthcare team at Southern Cancer Center will provide you with information and tools to help you immediately after cancer treatment ends and for long-term. This is also a good time to determine who will lead your ongoing primary medical care. You may want to schedule a follow-up appointment with your primary care family doctor or internal medicine doctor. If you do not have an established primary care physician, speak with your oncologist regarding a referral or listing of primary care physicians in your area.

Maintaining proper follow-up care and having a medical support system in place are essential for maintaining both physical and emotional health. It facilitates the transition back into everyday life with control. You have been through a lot, and follow-up care can help you stay healthy into the future.

 

Monitoring for Recurrence

During follow-up care your physician will monitor for a recurrence of cancer. A recurrence is when the cancer comes back after treatment.

Small areas of cancer cells may remain undetected in the body. Over time, these cells may increase in number until they show up on test results or cause symptoms. Depending on the type of cancer, this can occur weeks, months or even years after the original cancer was treated.

Your doctor will ask specific questions about your health and may perform a physical examination during your follow-up visits. They may also order blood tests or imaging tests. Unfortunately, it is impossible for doctors to know who will experience a recurrence.

The chance that a cancer will recur and the most likely timing and location of a recurrence depend on the type of cancer you were originally diagnosed with. For this reason, your doctor may tell you specific signs and symptoms to watch for and report.

Rest assured, if a recurrence is suspected, your doctor will order the necessary diagnostic tests, imaging or biopsies to gather as much information as possible for quick intervention. After testing is completed, your doctor will meet with you to discuss results and what the next steps should be.

Managing long-term side effects

It is understandable that some people experience side effects while receiving treatment. However, some side effects may linger after treatment is complete. These long-term effects are specific to certain types of treatment and usually develop within a defined time.  Your physician will be able to tell you if you’re at risk for developing any late effects based on the type of cancer you had, your individual treatment plan and your overall health. Some of the potential long-term side effects of cancer treatment are discussed here.

 

Bone and Joint Problems

Cancer survivors who received chemotherapy, steroid medications or hormonal therapy may develop thin or weak bones, called osteoporosis, or experience joint pain. You can lower your risk of osteoporosis by avoiding tobacco products, eating foods rich in calcium and vitamin D and having regular physical activity. Your physician may also prescribe medications that slow the rate of bone thinning, reduce new bone damage and may promote bone healing.

 

Chemo Brain

You may have heard the commonly used term “chemo brain” to describe difficulty thinking clearly after cancer treatment. However, survivors who did not receive chemotherapy report similar symptoms. These difficulties may vary in severity. If you experience severe problems concentrating, multitasking or understanding or remembering things, talk to your doctor or another member of the health care team to learn about ways to manage these issues.

 

Digestive Problems

Following chemotherapy, radiation or surgery, digestion may be affected by chronic diarrhea that reduces the body’s ability to absorb nutrients. Radiation to the abdominal area may cause scarring, chronic pain or other intestinal problems. If you experience any of these problems, a nutritionist or dietitian can work with you to help with digestion and maintaining a healthy weight. Your doctor may also refer you to a gastroenterologist for evaluation and management of these issues.

 

Endocrine (Hormone) System Problems

Certain types of cancer treatments may affect the endocrine system.  Men and women who receive radiation therapy to the head and neck area may experience lower levels of hormones or changes to the thyroid gland.

Chemotherapy, hormonal therapy and radiation therapy to the pelvic area may cause women to have lighter and fewer menstrual periods or stop menstruation completely. Menstrual periods may return for some younger women after treatment, but women older than 40 are less likely to have periods return. Some cancer treatments may not immediately cause menopause but may cause it to start sooner than normal. Surgical removal of a woman’s ovaries and/or uterus will also cause symptoms of menopause. Men with prostate cancer or breast cancer who receive hormonal therapy or who have their testicles removed may experience symptoms similar to menopause.

 

Emotional Difficulties

Cancer survivors may often experience a range of positive and negative emotions, including relief, thankfulness to be alive, fear of recurrence, anger, guilt, depression, anxiety and isolation. It is normal to feel as if you are on a roller coaster of emotions. If you are finding it difficult to cope with your emotions or they begin to negatively affect your daily activities or relationships, talk with a member of your healthcare team.

 

Fatigue

Fatigue is the most common side effect of cancer treatment and some cancer survivors may experience for months after finishing treatment. It is a persistent feeling of physical, emotional or mental tiredness or exhaustion that can seriously affect many aspects of a person’s life. If you experience fatigue, talk with your physician because there are things that can help.

 

Heart Problems

Heart issues can be caused by radiation therapy to the chest and specific types of chemotherapy. People 65 or older and those who received higher doses of chemotherapy have a higher risk of developing heart problems, which may include swelling of the heart muscle, problems with the heart’s ability to pump blood or heart disease. Your doctor may have monitored your heart during treatment with routine echocardiograms, or ultrasounds of the heart, also referred to as an ECHO. Your doctor will discuss if you should have regular evaluations for heart issues.

 

Lung Problems

Cancer survivors may experience changes with lung functioning due to chemotherapy and radiation therapy. These changes may include how well the lungs work, a thickening of the lining of the lungs, inflammation and difficulty breathing. Cancer survivors who received both chemotherapy and radiation therapy may have a higher risk of lung damage. People with a prior history of lung disease, such as COPD or asthma, and older adults may experience additional lung problems.

 

Lymphedema

Lymphedema is the abnormal accumulation of fluid in soft tissue caused by a blockage in the lymphatic system. Lymphedema typically affects the arms and legs, particularly in people treated for breast or genitourinary cancers (cancers that affect the urinary tract, bladder, kidneys, prostate, testicles and penis). Lymphedema can also occur in other parts of the body, including below the chin, face and occasionally in the mouth.

In some cases, swelling goes away on its own as the body heals and normal lymph fluid resumes. Lymphedema may become chronic when the lymphatic system can no longer meet the body’s demand for fluid drainage. There is no cure for chronic lymphedema; however, there are ways to manage it.

 

Peripheral Neuropathy

Peripheral neuropathy is a type of nerve damage that develops when the nerves that carry information back and forth between the brain and spinal cord are damaged. This damage can be caused by radiation therapy, some types of chemotherapy or by the cancer itself. Depending on which nerves are affected, a person can develop numbness, tingling, pain, muscle weakness or dizziness.

If you develop neuropathy, your doctor can help treat your symptoms. Many people recover fully within a few months to a few years. Sometimes, the condition may be more difficult to cure and may require long-term management.

 

Secondary Cancers

In rare instances chemotherapy and radiation therapy can damage bone marrow stem cells and increase the chance of developing either myelodysplasia, which is a blood cancer where the normal parts of the blood are either not made or are abnormal, or acute leukemia. Talk with your doctor about your risk of developing a secondary cancer and the signs or symptoms to watch for.

 

Other Physical Effects

Some survivors may have had a part of their body altered or removed as part of treatment. Survivors of cancers of the bone and soft tissue may experience physical and psychological effects from losing all or part of a limb, such as phantom limb pain, which is a feeling of pain in the limb that was removed.

To help survivors cope with these side effects and maximize their physical abilities, there are a wide range of supportive care and rehabilitation services available.

Life after Treatment:  What to Expect

Transition from active treatment to survivorship is different for every person. After treatment ends, cancer survivors often describe feelings ranging from relief to fear. Some survivors say they appreciate life more and have gained a new perspective and greater acceptance of themselves. At the same time, other survivors become anxious about their health and uncertain of how to cope with life after treatment, especially when frequent visits to the doctor end.

During treatment, the relationships they develop with their health care team provide a sense of support and security. After finishing treatment, the safety net of regular, frequent contact with the health care team changes. Survivors often miss this source of support, especially because new anxieties and challenges may surface at this time, such as physical problems, emotional challenges, fertility concerns, financial issues and workplace issues.

 

Fear of Recurrence

One of the most common concerns survivors have is worrying the cancer will come back. The fear of recurrence is very real and entirely normal. Anxious thoughts may be triggered by symptoms such as headache, cough or joint stiffness, or it may precede events such as your diagnosis anniversary or follow-up appointments and tests. For some survivors, these worries and feelings of uncertainty lead to struggles with depression and anxiety.

However, it is important to remember that although you cannot directly control whether the cancer returns, you can control how much the fear of recurrence affects your life.

 

Methods of Coping

Talk with your doctor to get accurate information about the risk of recurrence for your type and stage of cancer and what symptoms to look for. Most cancers have a predictable pattern of recurrence.

Recognize your emotions and talk about your fears and feelings with a trusted friend, family member or counselor.  You can also try writing your thoughts in a journal or blog.

Take care of yourself with healthy eating habits, regular exercise and getting enough sleep, which help you feel better both physically and emotionally. Avoid unhealthy habits, like smoking and excessive alcohol consumption, that have been linked to an increased risk of cancer recurrence.

Reduce stress to lower your overall level of anxiety. Try different methods to find out what works best for you. This could include spending time with family and friends, hobbies, taking a walk, meditating, enjoying a bath, exercising or laughing at a funny book or movie.

Remember, things improve with time.

A New Perspective on Your Health

Transition to survivorship can be a strong motivation to make positive lifestyle changes. It is especially important for cancer survivors to cultivate healthy habits to regain or build strength, reduce the severity of side effects, reduce the risk of developing secondary cancers or other health issues and enjoy life more. It is also important to set realistic goals and understand that change does not usually happen overnight. By setting your mind on accomplishing small, achievable goals each day, you will be working toward the larger lifestyle changes you want to achieve.

Here are some lifestyle changes to consider:

  • Stopping tobacco use is the single most important change a person can make to lower future cancer risk. Tobacco is linked to an increased risk of at least 15 types of cancer.  Many resources are available, including medication and counseling.
  • Reduce alcohol intake as it is one of the other substances consistently linked to cancer. Experts recommend women have no more than one alcoholic drink per day and men consume no more than two. One drink is defined as 12 ounces (oz) of beer, 5 oz of wine or 1.5 oz of 80-proof liquor.
  • Eating healthier by choosing to eat meals filled with fresh fruits and vegetables, whole grains, and other unprocessed, low-fat foods helps cancer survivors regain strength after treatment. It can also reduce the risk of heart disease, high blood pressure, obesity and diabetes. Research also suggests it creates a lower risk of recurrence and extended life span.
  • Exercise regularly as research has linked this with improved quality of life for cancer survivors. Regular physical activity can help reduce anxiety, depression and fatigue; improve self-esteem; increase feelings of optimism; improve heart health; reach and maintain a healthy weight; and boost muscle strength and endurance.Exercise also reduces the risk of high blood pressure, heart disease, stroke and diabetes. Some studies have shown that exercising regularly may help prevent the recurrence of breast, colon, prostate and ovarian cancers.  Survivors should avoid inactivity and, to the best of their ability, do at least 150 minutes of moderate aerobic exercise, like walking, every week and resistance (strength) training two or three days per week. Start slow and build up.
  • Managing stress is extremely important for your recovery.  Experiencing high levels of stress for a long time has been linked to health problems and a lower quality of life.  Make small changes by saying “no” to tasks you don’t have time or energy to complete. Other ways include exercise, social activities, support groups, acupuncture, yoga, massage and relaxation techniques.

Personal Reflection

Many survivors struggle with questions of why they had cancer and why they survived when others may have not. Some survivors may find themselves examining long-held views or beliefs as they try to make sense of their experience and find new meaning in life.

Although every person creates meaning from their experiences in their own way, other cancer survivors have told us they found answers through some of these methods:

  • Re-Evaluating Old Patterns and Priorities. Some people view their cancer experience as a “wake-up call” and begin to ask questions like: Are my current roles in my family or as a friend fulfilling? Does my job make me happy or am I just doing what other people expect me to do? What are the most important things in my life now?
  • Reaching Out for Spiritual Support. For some, spirituality and faith are a source of comfort and guidance.
  • Keeping a Journal or Blog. Writing down your thoughts and feelings starts a process of self-discovery and, for some, of spiritual development. Allowing yourself to think every day or every week about your feelings is a way to get to know yourself better and to understand what gives meaning to your life now. Blogging through social media may also connect you with and help inspire other people going through a similar situation.
  • Finding New Ways to Support Emotional Well-Being. Survivors may choose to begin new activities such as yoga, meditation, drawing, art or music therapy that help support their spiritual and emotional health and make them feel less fearful and anxious.

Changes within Families and Relationships

Cancer can change the way you relate to your family, partner, and friends, and the way they relate to you. When active treatment is over, some friends may become closer, while others may distance themselves. Relationship problems that may have been ignored before a cancer diagnosis can be brought to the surface. Everyone is changed by the cancer experience in ways they may not even be aware of.

 

Parenting and Family Life

Living with and beyond cancer often makes people rethink the way they live their lives, including the way they parent. When active treatment ends, many survivors find that parenting after cancer presents unique challenges. The guilt of constantly being away from home or unavailable can trigger a strong desire to just be a “normal parent,” or sometimes even a super parent, to make up for that lost time. As you adjust to life after treatment, you can only do your best and shouldn’t be hard on yourself because of what you might see as limitations.

Sometimes, making every minute after treatment with your family “count” becomes a top priority. However, trying to pack every minute with activities puts a lot of unnecessary stress and pressure on you and your family. Think about choosing more relaxed and manageable ways of connecting that will give you quality time and the change to enjoy shared experiences, like watching a favorite movie together or going for a walk.

 

Sexuality and Intimacy

In general, although people are less interested in sex while having cancer treatment and at times of crisis, interest in sex usually improves during recovery and survivorship. However, some survivors may experience changes in their sexual function or sex drive caused either directly or indirectly by cancer and cancer treatment.  Physical changes may affect the way a person feels about his or her body and their physical attractiveness, such as losing a breast or testicle, having a colostomy, losing weight or hair, or having scars or skin changes.

Intimacy is very closely connected to your feelings about your relationship as well as your feelings about yourself. By establishing open and ongoing communication with your spouse or partner, you both can better adapt to the changes cancer has caused in your lives as well as your relationship. A counselor who has experience working with people with cancer and talking through some of these issues can help both you and your partner.

 

Starting or Expanding Your Family

In general, becoming pregnant after cancer treatment is considered safe for both the mother and the baby, and pregnancy does not appear to increase a woman’s risk of recurrence. However, the exact amount of time female survivors should wait before trying to become pregnant depends on the type and stage of cancer, the type of treatment the woman received, any need for ongoing treatment, and her age and preferences. If you are a female survivor, you should talk with your doctor about whether your body can safely handle pregnancy.

For male survivors, there are no specific guidelines for trying to have a child after finishing cancer treatment. However, doctors may recommend waiting before trying to have a child, depending on a number of factors.

Going Back to Work

For many people, returning to a full-time work schedule is a sign both to themselves and the world of getting back to “normal.”  Working can provide opportunities to reconnect with colleagues and friends, focus on something other than cancer, get involved in interesting and challenging projects and start settling back into a regular routine and lifestyle. However, transitioning back in to the workforce may feel overwhelming at times.

Every survivor’s work situation is different. Many people with cancer who took time off for treatment return to work afterwards, while many others may have worked throughout treatment. Your decisions about work will likely depend on your financial resources, health insurance, the type of work you do and the nature of your recovery.

 

Planning Your Return

The first step is to talk with your doctor about whether you are ready to return to work. The timing depends on the type of cancer and treatment you had and the type of job you perform. Once you plan to return to work, you may want to meet with your human resource department to discuss transition plans. If you have been on continuous leave or FMLA, your employer may require you to submit paperwork stating it is OK for you to return to work with a formal return date.

Other things to consider making your transition back to work smoother include:

  • Planning to take small breaks throughout the day to help maintain your energy level.
  • Using lists and reminders or setting meeting and task alarms on your office e-mail system.
  • Scheduling frequent meetings with your manager to talk about the transition and make any necessary changes or adjustments.

 

Talking with Coworkers

It is your decision when and how to tell coworkers about your cancer experience. If you have been absent for a while and your physical appearance has changed, some of your coworkers may have questions. It is important to decide what you want to tell people in advance and how you plan to do it.

You may want to have private conversations with a few close coworkers. Or you may find it easier to send an e-mail or make an announcement at a staff meeting. Consider your work culture and what feels right for you.

Some employers and coworkers may not respond well. Their reactions usually have to do with past experiences or lack of familiarity with cancer. However, most survivors find their coworkers are supportive and caring. People often take your lead; if you are comfortable talking about your experience with cancer, they will likely feel the same.

 

Finding a New Job

For some survivors, the cancer experience reshapes their career priorities and causes them to question whether they still want to continue on their current career path. Other survivors are unable to return to their previous jobs and must take their careers in a new direction.

You must consider your personal situation and take proactive steps to boost your self-esteem and help you stay positive while you are looking for employment.

 

Managing Your Finances

The costs of cancer care can be high. Even people with reliable health insurance can be left with bills that quickly add up. Often, survivors have already lost income because they weren’t able to work as much or at all during treatment, making it difficult to pay for both medical and household expenses. This financial stress may increase if you are unable to return to work after finishing treatment.

Here are a few things to consider as you cope with the financial impact of cancer:

  • Investigate other sources of income if you are unable to return to work.
  • Organize bills and rank them in order of priority.
  • Make an appeal. If your insurance company has denied payment for a service or treatment, you have the right to ask them to conduct a full and fair review of its decision.
  • Talk to your creditors.
  • Ask for help. Talk with a trusted friend or family member or a social worker.
  • Contact an organization that offers help for cancer survivors facing financial challenges.

Support for Coping with Challenges

Every cancer survivor has individual concerns and challenges, some of which may not have been addressed specifically in this booklet. With any challenge, a good first step is being able to recognize your fears and talk about them. Effective coping requires understanding the challenge you are facing, thinking through solutions, asking for and allowing the support of others and feeling comfortable with the course of action you choose.

Talking with your doctor or another member of your health care team about any concerns you may have is an important part of your follow-up care, especially if something you are experiencing is holding you back from enjoying your life. Just as there were support options during treatment, there is also help for you during your transition into survivorship and beyond.

 

Rehabilitation Services

There are a variety of rehabilitation services for patients to help regain control over many aspects of their lives and remain as independent and productive as possible. Survivors and family members are encouraged to be active, informed partners in the rehabilitation process.

Your healthcare team at Southern Cancer Center can assist to locate local resources for services that may include:

  • Certified health and fitness programs
  • Clinic trials for survivors
  • Family counseling
  • Individual counseling
  • Marriage/couples therapy
  • Genetic counseling
  • Home care services
  • Nutritional planning
  • Occupational therapy
  • Pain management specialists
  • Physical therapy
  • Recreational therapy and camps
  • Tobacco cessation programs
  • Vocational (career) counseling
  • Survivorship support groups

As you move from active treatment into survivorship, know that you are not alone. You have family, friends and community resources available to help you manage the emotional, practical and financial issues that arise as you transition back into “normal” life.

Making a Difference

Many survivors express a strong desire to “give something back” because of the care and kindness they received. Many realize they have a lot of valuable experience that can help others facing cancer.  If you are interested in giving back, think about your own interests, strengths and areas of expertise and how various organizations could use them to help further their mission. Volunteering makes an important difference in someone else’s life while making a positive difference in your own.

Some opportunities may include:

  • Service and support
  • Awareness and education
  • Fundraising
  • Advocacy