Late Effects & Follow-Up Care

 
Research now tells us that as many as two-thirds of childhood cancer survivors can experience at least one "late effect" because of their cancer or treatment. Late effects can include disabilities or health problems, such as heart disease, infertility, and increased incidence of a secondary cancer. Survivors of childhood cancer are much more likely to report their health status as "fair" or "poor" in surveys (around 25 percent), compared to those who never had cancer (around 10 percent).
 
Below is a presentation (with audio) given by Dr. Anna Franklin, MD, the Medical Director of Adolescent and Young Adult Programs at MD Anderson. This presentation, "Young Adults and Their Stinkin' Issues," was given in April 2010 and is a good overview of the risks and realities of late effects. 
 

Slideshow:  Dr. Karin Walsh, Children's National Medical Center, presented at the RTA-DC conference in 2008 on neurocognitive late effects of childhood cancer and treatment. Click image below to browse the PDF of the slideshow.

Neurocognitive Late Effects of Childhood Cancer

What CAN You Control?

Sometimes, late effects are going to be unavoidable. Although your disease or treatment may have put you at risk for a secondary cancer, you can help with early detection through adherence to your follow-up plan. You can also help by reducing or eliminating risky behavior from your lifestyle. The risky behaviors listed below are harmful to the general population but should be even more carefully considered by members of the young adult survivorship population. 

1. No smoking!

  • You probably already know that smoking puts people at risk of lung cancer, which kills more Americans every year than car accidents, fires, murders, suicides, alcohol and drugs combined. But as a cancer survivor, your body may be even more susceptible to the harmful effects of smoking, especially if you were exposed to chemo or radiation that weakened your lungs. Even being around secondhand smoke from family members or friends can put your health at significant risk. 
  • Need to quit? According to the American Cancer Society, just eight hours after quitting smoking, an individual's carbon monoxide level in their blood drops to normal and within two weeks to three months after quitting, lung function increases up to 30 percent. For quitting resources, visit www.surgeongeneral.gov/tobacco or www.cdc.gov/tobaocc/how2quit.htm.

2. Brush and floss! 

  • Cancer survivors need to be especially diligent with their oral hygiene. Radiation and chemotherapy may have had a serious impact on your dental health, from cavities and sensitivity to weakened teeth roots and enamel. Make dental visits a priority fixture in your calendar:  try to set up a visit every six months.

3. Wear sunscreen. Not just any kind!

  • At least SPF 30. Make sure it protects against both UVA and UVB rays.
  • Limit sun exposure during the hottest part of the day (10am-2pm) and keep your skin covered when possible. 
  • According to the Environmental Working Group and recent studies, you should avoid sunscreens with vitamin A and oxybenzone, which can be harmful and may actually increase your cancer risk. Look up your sunscreen on the EWG's 2010 Sunscreen Guide to see how your sunscreen ranks in terms of effectiveness and ingredient risk.

4. Practice safe sex. Always.

5. If you drink alcohol, limit your intake.

  • Although an occasional glass of wine may have health benefits, alcohol raises the risk of cancers of the liver, throat, mouth, and breast. Cancer survivors who may already have damaged or weakened organs from their treatment are at even higher risk of suffering the harmful effects of alcohol.

 

Slideshow:  For more on steps you can take to stay healthy, click the image below for the PDF of a presentation given by City of Hope's Karla Wilson in Los Angeles in 2009 at a Rise to Action conference.

Steps to Healthy Living


Chronic Pain Issues

Pain is common to cancer patients while they are undergoing treatment, but sometimes pain persists even after treatment - a late effect. This type of pain is known as chronic pain and it can be a side effect of your treatment therapies, particularly if your bones, joints, or nerves experienced damage from chemo or radiation. 

Chronic pain can have a severe impact on the quality of life experienced by survivors afflicted with it. Therefore, it is important that you understand your pain and take steps to battle it. Survivors who let their pain go untreated can begin to feel powerless over it and may become depressed, develop low self-esteem, and be unable to live their lives to the fullest.

 

Tackling Pain                                                                                                  Image courtesy Amanda Hatfield

According to the World Health Organization, 85-97 percent of all cancer-related pain can be effectively managed and controlled. Your medical team should be able to help you develop the right pain management treatment plan for your own unique needs. There are many different pain medications available; you will need to work closely and openly with your medical team to keep track of what is most effective so your doctors can adjust your treatment as needed.

 

In addition, studies have proven that patients who learn pain-coping skills can help reduce their distress from pain. Some techniques include relaxation, meditation, and distraction, as well as support groups, massages, music, and pain management counseling. Pain is different for everyone, as is its treatment, so only you can make the best decisions about your chronic pain.

 

What to Discuss with Your Doctor

  • Tell them where it hurts, when it hurts, and how intense the pain is.
  • Tell them what makes the pain feel worse and makes it feel better.
  • Tell them how quickly your pain comes on, how long it lasts, and how often it occurs.
  • If you are taking pain medications, be sure to discuss how much relief you get. If your doctor is recommending new medications, be sure to ask about the possible side effects and be sure you understand how to take them properly.
  • Discuss how the pain is affecting your life and what activities you are unable to perform because you are in pain. Include information about your appetite, your ability to sleep, and whether you can perform your normal daily functions.

Emotional Issues, Including Post-Traumatic Stress Disorder

Image courtesy D Sharon Pruitt

It is only after treatment ends that many survivors and their families begin to truly process their cancer treatment. It is normal for survivors and their families to feel a wide range of emotions, aside from the relief and happiness that comes with the completion of successful treatment. Many of the normal emotional responses can be difficult to deal with, including: fear that the cancer will return; stress that comes from each follow-up visit and the uncertainty of what it will bring; sadness about the loss of a normal childhood; and even guilt from surviving when others you met along the way did not.

 

Late effects aren't all physical; some are psychological. For instance, some survivors (around 9 percent, according to one study) may develop post-traumatic stress disorder symptoms (PTSD). These symptoms can include the unwanted recollection of painful cancer memories, uncontrollable physical or emotional over-reactions, or going out of your way to avoid thinking about your cancer or treatment. Some survivors report a significant negative response upon entering a hospital, for example. Even one of these symptoms can get in the way of living a normal life and developing healthy relationships.

 

If you are suffering from emotional distress or possibly PTSD, discuss your concerns with your healthcare provider and seek a referral to a mental health professional. This is particularly important if your distress lasts more than two weeks and/or interferes with your daily activities. In particular, pay attention to some of the following signs:

 

  • Consistent tenderness, irritability, and low energy level
  • Changes in appetite or weight
  • Crying easily or being unable to cry
  • Sleeping a lot, or not sleeping well
  • Feeling hopeless; thoughts of escape or death
  • Decreased interest in activities that were once pleasurable
  • Physical reactions, including rapid heart rate, shortness of breath, or nausea, when thinking about cancer, or feeling extremely angry or fearful when thinking about cancer
  • Avoiding health care visits and/or refusing to discuss cancer

The below presentation (with audio) - "Coping with Cancer: the AYA Perspective" - was given by Wendy Griffith, a social work counselor at MD Anderson in April 2010 at the Houston RTA conference. Wendy's presentation is on the emotional impact of cancer, including signs and symptoms of potential psychological late effects like depression, anxiety, and PTSD.

 

Follow-Up Care and the Importance of Medical History

Most cancer survivors should be receiving annual follow-up visits for management of their long-term survivorship and late effects. You should also identify a local primary care physician that you can visit for minor injuries and illnesses, and it is crucial for you to make sure this physician is fully briefed on your cancer history and has the contact information for your long-term follow-up team.

 

The following presentation (with audio) about follow-up care was given by Dr. Marc Horowitz at RTA-Houston in April 2010. Dr. Horowitz is the Director of Program Development for the Texas Children's Cancer Center, which is introducing a national electronic records program called the Passport for Care:

Slideshow:  Revonda Mosher of Sinai Hospital of Baltimore presented in DC at our 2008 Rise to Action conference on the importance of follow-up care in a presentation titled "Getting There is Only Half the Journey." Click the below image for an easy-to-browse PDF of the presentation.

Follow up Care

Resources and News Articles

"Excess Mortality Persists in Childhood Cancer Survivors" (HealthDay - 7/13/10)

"Link Found Between Childhood Cancer and Non-Melanoma Skin Cancer" (PR Newswire - 6/8/10)

"Health Woes Common in Childhood Cancer Survivors" (Web MD Health News - 5/24/10)

"Childhood Cancer Survivors 4 Times More Prone to PTSD" (ANI - 5/4/10)

"Child Cancer Survivors Have Higher Heart Risk - Study" (Reuters - 12/8/09)

"Thoughts of Suicide Long after Childhood Cancer" (Reuters - 10/23/09)