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Childhood Cancer Survivors Late Effects?

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It shouldn’t come as any surprise that many childhood cancer survivors don’t test for late effects. I say this because, as a long-term cancer survivor, the prospect of treatment-induced late effects is terrifying. I’m not saying that that avoidance  is a logical approach to long-term health. I’m simply saying that this might happen.

Let me state at the beginning of this blog post, that I think all long-term cancer survivors should get tested for the late stage side effects that may affect them.

What are the possible short, long-term and late stage side effects that childhood cancer patients face?

Short-Term Side Effects

Short-term side effects occur during or immediately after treatment and usually resolve within a few weeks to months after treatment ends. They include:

  1. Fatigue: A common and pervasive feeling of tiredness and lack of energy.
  2. Nausea and Vomiting: Often caused by chemotherapy and radiation.
  3. Hair Loss (Alopecia): A result of chemotherapy affecting rapidly dividing cells, including hair follicles.
  4. Mouth Sores: Inflammation and sores in the mouth and throat, also known as mucositis.
  5. Infections: Due to weakened immune system from treatments, making patients more susceptible to infections.
  6. Anemia: Low red blood cell counts leading to fatigue and weakness.
  7. Bruising and Bleeding: Caused by low platelet counts.
  8. Pain: Can be a result of the cancer itself or treatments like surgery or radiation.
  9. Digestive Problems: Diarrhea or constipation from treatment effects on the digestive system.
  10. Skin Reactions: Such as redness, itching, or peeling, particularly from radiation therapy.

Long-Term Side Effects

Long-term side effects are those that appear during treatment and persist for months or years after treatment ends. They include:

  1. Cognitive Impairments: Difficulty with memory, attention, and learning, sometimes referred to as “chemo brain.”
  2. Growth and Development Issues: Stunted growth or delayed puberty due to the effects of treatment on growth plates and hormonal systems.
  3. Endocrine Disorders: Problems with thyroid, adrenal, or other hormone-producing glands.
  4. Fertility Issues: Reduced fertility or infertility due to damage to reproductive organs.
  5. Cardiac Problems: Heart damage, such as cardiomyopathy, particularly from certain chemotherapy drugs (e.g., anthracyclines) and radiation.
  6. Lung Problems: Reduced lung capacity or pulmonary fibrosis from radiation or certain chemotherapy drugs.
  7. Hearing Loss: Often a result of chemotherapy drugs like cisplatin.
  8. Bone and Joint Issues: Osteoporosis or joint pain due to treatment effects on bone density and health.

Late-Stage Side Effects

Late-stage side effects, or late effects, are those that occur months or years after treatment has ended and may include new health issues that develop as a consequence of the treatment. These include:

  1. Secondary Cancers: New cancers that develop as a result of the original cancer treatments, such as radiation or certain chemotherapies.
  2. Organ Damage: Long-term damage to organs such as the heart, lungs, kidneys, or liver from chemotherapy or radiation.
  3. Psychosocial Issues: Mental health challenges, such as depression, anxiety, or post-traumatic stress disorder (PTSD), as a result of the cancer experience.
  4. Chronic Pain: Persistent pain that continues long after treatment has ended.
  5. Chronic Fatigue Syndrome: Severe, prolonged fatigue that is not alleviated by rest.
  6. Endocrine Disorders: Such as hypothyroidism or growth hormone deficiencies.
  7. Cognitive and Learning Problems: Difficulties with memory, processing speed, and executive functions that become apparent or worsen over time.
  8. Cardiovascular Disease: Increased risk of heart disease or stroke due to the long-term effects of treatment.

Another reason for avoiding anything reminding survivors of their cancer may be the feeling that conventional oncology mistreated them in some way. Or that conventional oncology wasn’t honest with them when they were going through treatment.

If I sound disappointed, angry, cynical, etc. about my own cancer expriences it is because I am disappointed, angry, cynical, etc. that FDA approved “safe and effective” therapies created such devastation.

When childhood cancer patients agree to undergo therapy, there is no way that they understand the possible short, long-term and late stage side effects that can possibly befall them in the years and decades to come.

In my mind, it comes down to a simple question. If you were a cancer survivor, how would you feel?

If you’d like to learn more about those evidence-based but non-conventional therapies that have kept me in complete remission since 1999, email me at David.PeopleBeatingCancer@gmail.com

Thank you,

David Emerson

  • Cancer Survivor
  • Cancer Coach
  • Director PeopleBeatingCancer

Many childhood cancer survivors do not undergo recommended tests for late effects

“Most childhood cancer survivors are not up to date on guideline-recommended screening for late effects of cancer treatment or second malignancies, according to study results.

The retrospective, population-based study…included data from 3,241 adult survivors of childhood cancer. All had been diagnosed between July 1986 and December 2014…

The cohort included survivors at elevated risk for therapy-related

  • colorectal cancer,
  • breast cancer or
  • cardiomyopathy.

Analyses showed 10% of survivors had an elevated risk for colorectal cancer,

7% had increased risk for breast cancer and

99% had higher risk for cardiomyopathy.

Only 13% of those at elevated risk for colorectal cancer and 6% of those at risk for breast cancer were adherent to recommended surveillance as of February 2020. About half (53%) of those at elevated risk for cardiomyopathy were adherent to recommended surveillance…

Only 13% of those at elevated risk for colorectal cancer and 6% of those at risk for breast cancer were adherent to recommended surveillance as of February 2020. About half (53%) of those at elevated risk for cardiomyopathy were adherent to recommended surveillance….

Healio spoke with Shuldiner about the importance of surveillance screening for childhood cancer survivors, potential explanations for low adherence to surveillance recommendations, and the steps she and her colleagues are taking to improve adherence…

Healio: What are the potential explanations for such low adherence?

Shuldiner: From this study and previous work, we have found a few reasons why keeping up with screening in this population is difficult.

First, childhood cancer survivors who received treatment when they were young might not know what treatment they received or even what type of cancer they had. Without this information, it is impossible to know what screening they should receive.

Second, guidelines are complex, and they also change as we learn more about the effects of treatments survivors have received.

Third, primary care providers often do not have access to which treatments a survivor has received, and they are not aware that screening is recommended. Right now, the burden is on the survivor to know about their screening and inform their PCP.





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