When I was diagnosed with cancer, I assumed I would pursue the most aggressive and extensive treatment because I was otherwise healthy strong, and wanted another 50 years or more of healthy life. My mother and sister had similar attitudes, and I suspect almost every person diagnosed with cancer starts with the mindset that they will do whatever is necessary to beat this disease. That mindset is motivational and energizing, but it easily blinded me to slowing down and fully exploring the ramifications of doing whatever was necessary.
What is Iatrogenesis?
Iatrogenesis means the unintended harm or adverse effects caused by medical treatment or interventions. Every medical treatment has elements of iatrogenesis, including benign and common ones like taking Tylenol for pain (mark the time you took it because too much Tylenol can cause kidney failure). Iatrogenesis is a crucial consideration for cancer patients navigating our various treatment options. The assumption that one must do everything or take every possible treatment approach can significantly impact our physical and emotional well-being.
When faced with a cancer diagnosis, we are presented with a range of treatment options, including surgery, chemotherapy, immunotherapy, hormone therapy, and radiation. Each of these treatments carries its own benefits, set of risks, and potential complications. Surgery, for example, can result in infection, scarring, and other surgical complications. Chemotherapy, on the other hand, can lead to side effects such as nausea, hair loss, and fatigue. Radiation therapy may cause skin irritation and other localized side effects.
Lifelong Impacts
Some side effects from cancer treatment can be lifelong, including cardiac weakness, bone density reduction, early menopause, and brain fog. For example, certain chemotherapy drugs may weaken the heart muscle over time, leading to cardiac issues, which is why an individual can only receive a limited lifetime dosage of AC (Red Devil). Radiation therapy, especially when administered to the bones, and chemotherapy can cause a reduction in bone density, increasing the risk of fractures and osteoporosis. Additionally, some cancer survivors may experience cognitive difficulties, commonly referred to as "chemo brain" or "brain fog," which can affect memory, concentration, and overall cognitive function.
Chemotherapy, surgery, and hormone therapies can propel women into permanent menopause decades earlier than usual, bringing with it more cardiac, bone, and mental risks, Patients and healthcare providers need to discuss these potential long-term side effects and make difficult choices about the risk of the cancer metastasizing or recurring vs living with other medical complications. There are no fortune tellers and no perfect, correct answers.
The most comprehensive statistics on the incidence of iatrogenesis in cancer treatment comes from the study of survivors of childhood cancer from the National Cancer Institute.
“By age 50 years, the cumulative incidence of a self-reported severe, disabling, life-threatening, or fatal health condition was 53.6% among survivors, compared with 19.8% among a sibling control group. Among survivors who reached age 35 years without a previous severe, disabling, life-threatening, or fatal health condition, 25.9% experienced a new grade 3 to grade 5 health condition within 10 years, compared with 6.0% of healthy siblings.” (source: Cancer.gov, Childhood Cancer Survivor Study).
Children’s bodies are different from adults and no one should apply the findings of those studies to adults but the concept that treatment can trigger other medical conditions is worth exploring when considering any intervention, not just chemotherapy.
Patients and their dugout must understand that no treatment option is risk-free. Side effects education that comes with chemotherapy, immunotherapy, and radiation is helpful, but patients need to ask about the long-term risks as well. Patients, their supporters, and their medical team need to have honest and open discussions about the risks and ramifications of the treatment, balancing cancer risk versus other health issues. Each choice involves a tradeoff between the risks associated with the treatment and the potential benefits of cancer control or remission. This decision-making process can be challenging and sensitive, as the fear of making the wrong choice can be overwhelming. Suddenly, I was asked to make decisions that my life may depend on with acute awareness that I wasn’t a trained medical professional. My filtering question was to ask the physicians if they would recommend this for themselves, their sister, their daughter, or their mother (choose the one that fits the patient's age).
Balancing Cancer Risks vs Treatment Risks
Research studies on cancer treatments are often based on large population samples that never perfectly applies to an individual. Each person's cancer journey is unique; what works for one person may not work for another.
Shared decision-making between patients and their healthcare team is essential in finding the right balance between cancer and treatment risks. Patients should be empowered to ask questions, seek second opinions, and explore alternative treatment approaches if they feel it is necessary. It is essential to consider the physical impact of treatment and the emotional and psychological toll it may take.
Support systems, such as patient support groups and counseling services, can play a vital role in helping patients navigate the complexities of treatment decision-making. These resources provide a safe space for patients to share their fears, concerns, and experiences with others who may be going through similar situations. It is helpful to “compare notes” and often validating to find other people having similar, albeit unconventional, reactions to treatment.
Ultimately, the goal is to find an individualized treatment plan that aligns with the your values, preferences, and overall well-being. It is essential to remember that cancer treatment is not a one-size-fits-all approach. Each patient's journey is unique, and the decision-making process should reflect that individuality.
Iatrogenesis and the assumption that one must do everything or take every treatment approach can have significant impacts on cancer patients. We must carefully consider the tradeoff between cancer risk and treatment risk to find the right balance for their situation. Risk tolerance is incredibly personal. We must determine our risk tolerance and share it with our loved ones and healthcare providers. Open communication is vital in navigating the complexities of cancer treatment decision-making.
Every time a treatment recommendation is made, ask questions about the near and long-term risks associated with that treatment versus the benefit of the treatment for your care. Knowledge is power. Just ask.