Info for Survivors – Medical

Meet Raygan - Leukemia warrior

Info for Survivors – Medical

Meet Raygan - Leukemia warrior

Know Your Medical History

Knowing your medical history is key to maintaining good health. Consider completing a treatment summary to organize your medical information. This will help you better understand your medical history and accurately communicate this information to your healthcare providers – communication is essential to receiving good care. It helps track your progress related to previously identified problems and provides an opportunity for your physician to screen for potential new medical issues.

Your medical record should include:

  • Your specific diagnosis, including stage and location of cancer
  • Date of diagnosis
  • Dates and duration of treatments
  • Number of relapses and dates
  • Copies of any pertinent X-rays, MRIs and CT scans
  • Names and telephone numbers of treatment providers
  • Your specific treatment (not all treatments will apply to you), including:
    • Chemotherapy (drug, dosage total, frequency and modality)
    • Blood counts and reactions to medications
    • Surgery (date and type, including placement of central-line catheters)
    • Radiation (area and total dosage)
    • Date and type (autologous, related or unrelated allogenic) of bone-marrow or stem-cell transplant, if applicable, as well as treatments in preparation for any transplants
    • Any complications and follow-up recommendations
    • Previous and current medications
  • Copies of pertinent X-rays, MRIs and CT scans
  • Late effects and recommended testing
  • Blood transfusions
  • If you are participating in a clinical trial, be familiar with relevant information

Additional information can be found here:

Your Medical Care After Cancer

It is important to maintain oncology follow-up visits, yearly physicals, and other examinations to maintain good health. About two years following completion of treatment, your status will change from “cancer patient” to “cancer survivor.”

Follow-up care may include routine check-ups with other subspecialists, as well as annual visits to a late-effects clinic. Going to a late-effects clinic has several benefits. You’ll get access to a multidisciplinary team at a major medical center, receive comprehensive care in one setting and participate in research studies that will benefit future cancer patients and survivors. Whether you go to a late-effects clinic or to your primary physician, make sure your physician is assessing your current health status, tracking your progress on previously identified problems and screening for new problems.

You can also develop a late effects assessment of potential medical and educational late effects specific to your diagnosis and treatment. If you are not attending a late-effects clinic, make sure your physician is aware of the long-term follow-up guidelines recommended by the Children’s Oncology Group. These can be found at

Here are some things to keep in mind about medical appointments:

  • Share all your medical history with any new doctor or other medical provider
  • Ask any questions you may have about potential late effects of treatment. Keeping several written copies of medical-treatment summaries will make this process easier.
  • Share any concerns you have and discuss any physical changes you have noticed. This might lead the doctor to order other tests. Remember that no concern of yours is too small.
  • Make sure your annual medical checkup includes:
    • A complete physical examination, including blood count, urinalysis and other recommended tests
    • Screening for breast, cervical (female) and colorectal cancers
    • Monitoring for conditions that may arise from your particular treatment
    • After reviewing your diagnosis and treatment with you, your physician may recommend additional tests

In addition to getting annual physical examinations, you should practice preventative healthcare. This includes regular dental care and undergoing any tests relevant to your diagnosis. As examples, radiation therapy delivered around the eyes or long-term steroid use can lead to cataracts, so you might need yearly vision examinations; hearing might be affected if you received ototoxic medications like cisplatin, so you should be monitored for hearing loss on a regular basis. Certain chemotherapy drugs can lead to osteoporosis, a disease of the skeleton that results bone loss, so you may need to take Vitamin D and calcium supplements to minimize this risk.

Additional information can be found here:

Potential Late Effects

As the number of childhood cancer survivors continues to grow, so does information on the long-term medical side effects, generally known as late effects, of cancer treatment. A late effect is defined as a chronic or late-occurring adverse outcome, complication or disability that persists or develops from the diagnosis and treatment of cancer. Studies indicate that more than two-thirds of young adult survivors of childhood cancer eventually suffer at least one late effect, with some survivors experiencing multiple late effects. Medical late effects can occur in any organ or system of the body and vary from person to person. Factors that affect your risk for late effects include diagnosis, age at diagnosis, gender, treatment, complications, family history, health prior to diagnosis and overall health.

Some late effects are visible, such as amputation of a limb or removal of the eye. Some will require testing in order to diagnose. These may occur during childhood, adolescence or may be triggered by an unrelated disease or effects of the aging process. As the survivorship rate continues to grow, the medical community is working continuously to adjust treatments to eliminate or minimize late effects.

Maintaining your oncology follow-up visits and yearly physicals will track currently identified problems and will also provide the opportunity to screen for late effects that may not have been present before. To stay knowledgeable about late effects, you can develop a late effects assessment of potential medical and educational late effects specific to your diagnosis and treatment. This information should be discussed with your physician.


Some cancer treatments, including radiation to the testes or ovaries, surgery to the reproductive organs and alkylator drugs, may cause fertility problems in both men and women. (See Late Effects After Treatment Tool.) Other factors that may affect a childhood cancer survivor’s fertility include:

  • Type and location of cancer
  • Age and developmental age at time of diagnosis
  • Gender
  • Types and dosage of drugs
  • Radiation to the brain affects organs and glands that require stimulation to function and produce hormones

Because fertility is a sensitive and emotional topic, it may be difficult to discuss with your partner. The following material is meant to provide you with information and options. Modern medicine continues to make advances both in the area of infertility and the area of minimizing the late effects of cancer treatment related to fertility. (See Cancer Resources for updated fertility sites.) Please discuss any concerns, and options with your doctor.

What is infertility?

Infertility is the inability to start or maintain a pregnancy. Some cancer treatments:

  • Cause infertility
  • May increase the difficulty of conception
  • Make maintaining a pregnancy more difficult

If you are female and just beginning cancer treatment, Lindsay Nohr, Founder of Fertile Hope, has written some helpful questions (listed below) you may wish to ask your medical team. If you have completed treatment, these questions may help you gather information regarding your current and future fertility.

  • Will my treatment have any short- or long-term side effects on my reproductive system?
  • Is infertility a possible side effect?
  • Are there alternative treatments that will result in less damage to my reproductive system?
  • What are my fertility-preservation options before, during and after treatment?
  • Would any of these options make my cancer treatment less effective?
  • After treatment, will I experience premature menopause?
  • If I become menopausal after treatment, is this change permanent or temporary?
  • If I become infertile after treatment, what are my options for becoming a parent?
  • How long should I wait after treatment before trying to conceive?
  • Can you refer me to a infertility specialist?

What are my choices if I believe I am infertile?

Talk with Your Physician
If you are concerned about infertility, talk with your doctor about the type of cancer and treatment you had as a child. Treatments once thought to cause infertility have actually not affected fertility. This information may affect your decisions regarding birth control. You may also consider consulting with an infertility specialist. Many options are available to infertile couples, including fertility-cycle hormonal enhancement, donor insemination, donor eggs, in vitro fertilization and surrogacy. For more information on parenthood options, visit Fertile Hope . Fertile Hope is an organization dedicated to helping cancer patients faced with infertility. The website details the actual procedures and costs associated with each option.

Additional information can be found here:

Many infertile couples choose adoption rather than infertility treatments, or they decide to adopt after infertility treatments have failed. If you are considering adoption, you have many options from which to choose, including domestic parental placement, domestic waiting child/foster care adoption and international adoptions. Each has its own benefits and risks. You may want to begin your research at the local library. Several factors to consider prior to adoption are cost, ethnic heritage, the age of the child you wish to adopt, preparation in dealing with a child who has been abused or neglected, and flexibility in traveling at a moment’s notice. For further answers to adoption questions, visit

Additional information can be found here:

Remain Childless* *Some infertile couples chose to remain childless. This can be a rewarding option for couples who have dealt with their infertility and have decided to fulfill their lives in other ways. This may or may not include having children into your life. Perhaps you might choose to volunteer at a school, camp or nonprofit organization that works with children. Or you can take an active role in the lives of children that you are close to, including nieces, nephews and children of friends.

Do health insurance plans cover infertility treatments?

The degree to which infertility services is covered depends on where you live and the type of insurance plan you have. More than a dozen states currently have laws that require insurers to either cover or offer some form of infertility diagnosis and treatment. The laws vary greatly in their scope of what is and is not required to be covered. For more information about the specific laws for each of those states, please call your state’s Insurance Commissioner’s office or visit To learn about pending insurance legislation in your state, please contact your state representative (see Advocacy). Whether or not you live in a state with laws requiring insurance coverage for infertility treatment, you may want to consult with your employer’s director of human resources to determine the exact coverage your plan provides.

What impact does infertility have on psychological well-being?

Infertility, overwhelming medical decisions and the uncertainties infertility can generate, often combine to create one of the most distressing life crises that a couple can experience. The long-term inability to conceive a child can evoke significant feelings of loss. If your find yourself feeling anxious, depressed, out of control or isolated, you are not alone. However, if these feelings persist, professional intervention may help you cope.

How I do I know if psychological counseling would be beneficial?

Everyone has feelings and emotional ups and downs as they pursue infertility treatment. Feeling overwhelmed at times is a perfectly normal response. However, if you experience any of the following symptoms for a prolonged period, you may benefit from working with a mental health professional:

  • Loss of interest in usual activities
  • Persistent sadness or depression
  • Strained interpersonal relationships
  • Difficulty thinking of anything other than your infertility
  • High level of anxiety
  • Diminished ability to complete tasks
  • Difficulty concentrating
  • Change in sleep patterns.
  • Change in appetite or weight
  • Increased use of drugs or alcohol
  • Thoughts about death or suicide
  • Social isolation
  • Persistent feelings of pessimism, guilt or worthlessness
  • Persistent feelings of anger or bitterness

There are times during infertility treatment when discussion with a mental health professional about infertility options and your feelings can clarify and aid your decision-making. For example, consultation with a mental health professional may be helpful to you and your partner if you are:

  • At a treatment crossroads
  • Deciding among alternate treatment options
  • Exploring other family-building options
  • Considering third-party assistance
  • Having difficulty communicating with your partner, or if you and your partner have different views about which direction to take

How can psychological treatment help me and my partner cope with infertility?

Mental health professionals with experience in infertility treatment can help a great deal. Their primary goal is to help individuals and couples learn to cope with the physical and emotional changes associated with infertility, as well as with the painful and intrusive medical procedures that are often part of its treatment. For some, the focus of therapy may be on how to deal with a partner’s response. For others, it may be on how to choose the right medical treatment or begin exploring other family-building options. For still others, it may be on how to control stress, anxiety, or depression. By teaching clients problem-solving strategies in a supportive environment, mental health professionals help them work through grief, fear and other emotions, leading to a positive resolution of their infertility issues. A good therapist can also help you strengthen current positive coping skills and develop new ones, and improve communication with others. For many, the crisis of infertility eventually proves to be an opportunity for life-enhancing personal growth.

Additional information can be found here:

(Some of the above material reprinted with permission from the American Society of Reproductive Medicine.)