Why Speak Up For Childhood Cancer and Late Effects?
What most people don’t know is that just because one survives Childhood Cancer, it doesn't necessarily mean one’s battle is over, and one is now “cancer-free”- FALSE. From personal experience, I can tell you that Childhood Cancer is a lifelong diagnosis. First, we must survive the cancer treatment and then, live with a lifetime of late effects. These late effects could become barriers in our future lives, making it difficult to accomplish many life goals such as education, career, independent living, forming a family, and so much more.
After being "cancer-free" for the past few years, I now live with these late effects, which have become barriers in my life, and I have had to face tremendous amounts of challenges to get to where I am today, however, I keep moving forward, and keep thriving reminding myself that the biggest battle of all (childhood cancer) has been conquered. This is why I initiated BeholdBeGold, to shine a light on those who have been personally affected by these late effects of childhood cancer. Life can become difficult after survivorship however, I hope that by reading my blog, and sharing mine and others personal survivorship late effect journeys with you, you will be able to relate, and know that you are not alone. We are all in this together.
I also hope that you get to learn more about me (if you don’t personally know me already), learn more about my childhood cancer journey, learn more about OTHERS childhood cancer and late effect journeys, learn more about childhood cancer facts, research, and statistics, learn more about late effects of childhood cancer, how childhood cancer can affect you even if you don’t have childhood cancer, learn more about organizations and coalitions that support childhood cancer, and my favorite- learn more about how YOU can help and GO Gold for Childhood Cancer!
Thank you so much for being part of this community!
Behold and Be Gold!!
"If you have a voice, you have the privilege of using that voice for change" -Cameron Boyce
Types of Childhood Cancer Late Effects
Organ or Body Function
- Heart and blood vessel late effects are more likely to occur after treatment for certain childhood cancers.
- Radiation to the chest and certain types of chemotherapy increase the risk of heart and blood vessel late effects.
- Late effects that affect the heart and blood vessels may cause certain health problems.
- Certain cancer treatments can affect the lungs.
- Lung problems can occur in children who have had radiation therapy to the chest or total body irradiation.
- The risk of problems depends on the dose of radiation, how much of the lungs get radiation, and the age of the patient.
- Bone and joint late effects are more likely to occur after treatment for certain childhood cancers.
- Radiation therapy, surgery, chemotherapy, and other treatments increase the risk of bone and joint late effects.
- Amputation or limb-sparing surgery to remove the cancer and prevent it from coming back may cause late effects depending on where the tumor was, age of the patient, and type of surgery.
Growth and Physical Development
- Growth, development, and hormone problems. Cancer treatments may affect the glands that make hormones. These glands are a part of the endocrine system and control many body functions, such as growth, metabolism, and puberty.
- Radiation therapy near the brain, eyes, or ears. This can affect the pituitary gland. Children who have had radiation therapy to these areas before reaching their adult height may have problems with growth.
- Radiation therapy to the muscles, bones, and soft tissues. This can lead to reduced or uneven growth of body parts. For example, it can lead to a curved spine called scoliosis.
- Some cancer treatments can damage the testes or ovaries (reproductive organs). This can lead to temporary or permanent infertility (not being able to have children).
- Chemotherapy, radiation, and surgery all can have lasting effects on reproductive health.
- A child's risk depends on their diagnosis, the type of treatment, and the dose of medicine. But even then, doctors can't say for sure what the lasting effects will be.
- Some childhood cancer treatments can increase the risk for dental problems.
- Cancer treatments that can cause dental problems include Chemotherapy, Radiation, and Azathioprine, sometimes given to patients as part of a hematopoietic cell transplant (also known as bone marrow or stem cell transplant)
- Because teeth develop slowly, these problems are more likely to develop in people who received chemotherapy over a prolonged period (several years) during childhood.
Central Nervous System
- Brain and spinal cord late effects are more likely to occur after treatment for certain childhood cancers.
- Children treated for brain tumors or acute lymphoblastic leukemia (ALL) are more likely to be affected due to the therapies used to treat these cancers. However, cognitive problems have been identified in survivors of other cancers as well.
- Radiation to the brain increases the risk of brain and spinal cord late effects.
- Late effects that affect the brain and spinal cord may cause certain health problems.
- Possible signs and symptoms of brain and spinal cord late effects include headaches, loss of coordination, and seizures.
- Survivors may also have late effects that affect thinking, learning, memory, emotions, and behavior.
- Some cognitive changes are temporary, while others may be long-lasting.
- Children with cognitive late effects are more likely to have problems in school and have lower academic achievement. They are also more likely to have trouble with employment, independent living, and development of social relations.
Psychosocial
- Fear and Anxiety
- Depression
- Isolation
- Decreased Coping
- Low Self-Esteem and Lack of Confidence
- PTSD
- Survivors Guilt
- Intact Coping Strategies
- Sense of Self
- Benefit Finding
- Confidence and Self Esteem