Mariah
Osteosarcoma Survivor
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Josh
Brain Tumor Survivor
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Sydney
Leukemia Survivor
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Alijah
Leukemia Survivor
Read Alijah's Story

Rosie
Wilms Tumor Survivor
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Ryan
Leukemia Survivor
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Sydney
Retinoblastoma Survivor
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Survivorship

Increasing cancer survivorship

Children's Cancer Research Fund is working every day to increase survivorship and develop new, life-saving research that can improve the health and well-being of childhood cancer survivors.

Thanks to new and developing research and therapies, more than 80 percent of children diagnosed with cancer can be expected to be long-term survivors. Childhood cancer survivors now number nearly 300,000 in the United States. In fact, for the first time ever, there now exists a large and rapidly growing population of individuals who have been cured of childhood cancer, and who have survived years, even decades, from the time they were treated.

Unfortunately, however, as a consequence of their disease and treatment these long-term survivors now face significant, largely uncharacterized health risks, which they must deal with for the remainder of their lives.

Thus, the population of childhood cancer survivors presents researchers with both an opportunity and an obligation:

  • The opportunity to gain new knowledge about the long-term effects of cancer and therapy, knowledge that can be used to help design treatment protocols and intervention strategies that will increase survival and minimize harmful health effects
  • The obligation to educate survivors about the potential impacts of cancer diagnosis and treatment on their health, and to provide follow-up care, for example, by creating and implementing programs for the prevention and early detection of late effects

Who is a childhood cancer survivor?

  • Anyone who has survived childhood cancer. After five-years disease free, most are considered “cured” of cancer.
  • Family members, friends and caregivers impacted by the survivorship experience are also survivors

What are Late Effects?

  • Medical conditions that occur months to years after cancer diagnosis and treatment
  • Can occur during treatment and persist long-term
  • Can be new late-onset medical problems

Late effects include:

Medical late effects:

  • Endocrine (hormone) issues
  • Infertility
  • Cardiovascular (heart) disease
  • Visual or hearing impairment
  • Secondary cancers
  • Bone health concerns

Neurocognitive late effects:

  • Thinking
  • Learning
  • Problem solving
  • Remembering
  • Paying attention
  • Concentrating

Emotional and social late effects

  • Difficulty reintegrating into school or family after treatment
  • Depression
  • Anxiety
  • Post-traumatic stress

Taken with permission from http://www.cancer.umn.edu

What Can You Do?

  • Make a Survivorship Plan
  • Understand YOUR risks for specific late effects. Risks are not the same for a 10 year old with Hodgkin’s lymphoma treated with radiation therapy vs a 60 year old with acute leukemia treated with bone marrow transplant
  • Establish a regular medical care provider
  • Know details of your cancer and its treatments
  • Consider evaluation in a Long Term Follow Up Clinic for Cancer Survivors
  • Follow guidelines for follow up tests and exams
  • Maintain a healthy lifestyle
  • Avoid smoking or chewing tobacco
  • Eat a healthy diet and be physically active
  • Wear sunscreen
  • Participate in Clinical Trials

Advances in cancer treatment have occurred mainly because of clinical trials. Improvements in survivorship care can only occur with advanced research and clinical trials.

Learn more about the University of Minnesota's Survivorship Clinic and ongoing research to increase health and well-being after childhood cancer. Also visit http://www.umphysicians.org/clinics/long-term-follow-up-clinic/

Cancer Survivorship Resources

We sat down with Dr. Karim Sadak, Director of the Cancer Survivor Program at the University of Minnesota Amplatz Children’s Hospital to help answer some burning questions about childhood cancer survivorship.

What is the definition of a “cancer survivor” or a survivor of a blood or bone marrow transplantation (BMT)?

Dr. Sadak explains that there are many definitions of who is considered a “survivor”.

Are there clinics specifically designed for survivors of childhood cancer?

Dr. Sadak gives an overview of what a clinic for survivors is and why it is important for a survivor to access a clinic with expertise in treating survivors of childhood cancer.

What are “late-effects” of childhood cancer treatments and what causes them?

Dr. Sadak gives an overview of what late-effects are, and why a survivor of childhood cancer should be aware of the possible late-effect associated the cancer treatments that he/she had.

What are some of the medical late-effects of childhood cancer treatments?

In part I, Dr. Sadak talks about health concerns among childhood cancer survivors like heart/cardiovascular health, which is a common late-effect, infertility, and osteonecrosis or “bone death”.

In part II, Dr. Sadak talks about the risk of secondary cancers among childhood cancer survivors, and how to be diligent about monitoring for these. He also talks about the importance of survivorship medicine, care and research that changes how the next generation of cancer patients are treated, giving the example of the modification of lymphoma treatments in order to mitigate breast cancer cases in female survivors.

What are some of the neuro-cognitive late-effects of childhood cancer treatments?

Dr. Sadak tells us that neuro-cognitive late-effects are something that can be addressed and mitigated, like “chemo brain” that can appear years after treatment, and other problems that can effect school or work performance.

What are some of the emotional-social/psycho-social late-effects of childhood cancer treatments?

Dr. Sadak address issues such as post-traumatic stress disorder (PTSD), anxiety, change in mood and depression that can affect a survivor’s quality-of-life. These symptoms are also seen in caregivers/parents and siblings of a childhood cancer survivor.

What advice can you give caregivers/parents who might have a hard time “letting go” of their adult childhood cancer survivor who is going off into the world, going off to college and moving away from home?

Dr. Sadak gives some great advice on how parents/caregivers can deal with this transition, and how to help establish medical care for their survivor with student health providers on campus.

Is a cancer survivors program beneficial for a survivor of another disease who has been treated with similar medications like chemotherapy, radiation or blood or bone marrow transplantation?

Dr. Sadak discusses the benefits for survivors of other diseases who were treated cancer treatments to also seek out expertise in cancer treatments late-effects.

Can late-effects be prevented?

Dr. Sadak gives some easy and common sense ways to help prevent some potentially devastating late-effects.

What is a visit to a cancer survivor clinic like?

Dr. Sadak walks us through a first-time patient visit to a survivor clinic/program, highlights the experts on a patient’s care team, and talks about the very valuable care plan that is a blue-print for the health of a survivor going forward to help prevent, early detect, early intervene, and monitor potential late-effects.

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