There isn’t a lot of concrete information out there about what changes to expect following brain cancer treatment. Part of that is because it can vary so much depending on the person. So, as I’ve gotten quite used to on this journey, I learn as I go.
Side Effects vs Symptoms
It has always been difficult to distinguish between symptoms and side effects. Symptoms are things I experience as a result of my condition – brain cancer. Side effects are things I experience as a result of the treatment I’ve had for my cancer – radiation and chemotherapy. And the difference does matter. Side effects from my treatments are things we can somewhat expect ongoing and are not cause for alarm. An uptick or change in symptoms however could mean my condition has changed. Sometimes it’s impossible to decipher which is why I go in every 3 months for an MRI and consult with my oncologist. Astrocytomas are truly still a mystery to us – all brain cancers are, so it’s important to keep tabs on things since it’s so unpredictable.
The way I try to decipher between symptoms and side effects is to remember what I was experiencing prior to my cancer treatments. For me, that includes neck tremors, hand pain, shoulder pain, speech difficulties, misjudging perception, dropping things more than normal, changes in eyesight (blurred vision or tunnel vision), mood swings, ADHD symptoms, tics, night sweats, fatigue, changes in motivation level, tingling in my hands and down the back of my legs. These are all things that I tend to label as symptoms of my condition, because they existed before any cancer treatments. With any changes in these symptoms, I’d go straight to my oncologist. For the record, I don’t (and never have) experienced these things 24/7 – they are usually pretty fleeting and they go as quickly as they come.
To make things even more fun, side effects and symptoms can overlap and work together. Fatigue is the best example of that. I am often fatigued, because fatigue is a symptom of my condition and also a side effect from both cancer treatments. While side effects from chemotherapy tend to go away over time, some side effects from radiation therapy can actually worsen over time.
Radiation
We know that radiation damages a lot of healthy tissue in addition to the cancer cells. We also know that many radiation patients experience long term effects from the treatment. According to a study published in 2018, 50-90% of radiation therapy patients experience significant cognitive disability (Makale et al.). This is especially important to think about for younger patients. Here’s a direct quote from a study published in 2021: “Notably, young adults are the critical population that faces major consequences because the early onset of the disease may affect their development” (Alemany et al.). This same study found that many patients with low grade gliomas can take years after radiation treatment to develop cognitive deficits.
Despite any advances in the field of brain cancer treatment, survival rates are quite low, therefore efforts are focused on increasing survival rather than looking at long-lasting adverse treatment effects. Those diagnosed at a younger age will likely face longer standing hardships due to damaging the brain so early on, and giving a longer window of time to see adverse treatment effects develop.
Frontal Lobe
My tumor locations are in the right frontal lobe of my brain therefore that’s where the radiation occurred. The frontal lobes are important for thinking, emotions, personality, judgement, self-control, social understanding, recalling information, muscle control and movements, memory storage and much more. It’s also important for executive functions such as self-control, short-term memory and attention span.
Damage to the frontal lobes can result in:
- Inability or difficulty planning a sequence of movements needed to complete multi-step tasks
- Inability to focus on a task and filter out distractions (ADHD symptoms)
- Mood swings
- Difficulty controlling a response or an impulse
- Difficulty problem solving
- Reduced motivation
- Reduced awareness
- Changes in personality
- Changes in social behavior
This isn’t a comprehensive list nor is it true for everyone. I can and will only speak to my own experiences. Now that my cancer treatments are complete it feels like a good time to share with people what types of changes I’m experiencing. For me, these things are a daily reminder that although cancer treatment is behind me for now, living with cancer still and always will present challenges. Personally, I have experienced most of these challenges listed above at varying degrees – some more than others. I am still me at my core, I’m still high functioning, I’m still a full time operations manager at a mental healthcare facility. So it’s not doom and gloom by any means, but I do find it important to share the challenges.
I struggle the most with reduced motivation, reduced stress tolerance and inability to focus. I find that I get overwhelmed easier as well. In general, I have less cognitive, emotional and physical stamina because my brain isn’t your usual brain – it’s had to make room for cancer cells and endure powerful cancer treatments. And we know the brain is at the center of everything. The brain controls what you think and feel, how you learn and remember, and the way you move and talk. It controls how your body functions and if it functions. So although I’m past the cancer treatments and I’ve beat the tumor into a dormant state, it makes sense that there are lasting effects that I face.
Cognition
It’s of course scary to notice a decline in my cognitive “sharpness”. So I did what I usually do to try and take power back in a situation – I researched. What can I do to strengthen my cognition after radiation treatments? What I of course found was that there isn’t one magic exercise or activity that I can do to strengthen my cognition. Rather, the usual prescription of a healthy diet, exercise, and sleep is the best thing I can do. It’s all about making sure to nourish my body with the basic things it needs to be its healthiest.
Because I discussed a study that focused on people who are diagnosed at a younger age, I wanted to share a resource I found. In my research I came across an organization called Stupid Cancer. Their mission is to help empower everyone affected by adolescent and young adult (AYA) cancer by ending isolation and building community. Check out their website if this applies to you!
Cognitive Changes after Cancer Treatment is another helpful resource. This article discusses that tumors located in the central nervous system (CNS) are at a higher likelihood of causing cognitive changes than many other cancers. It talks about some of the different types and severities of cognitive changes and goes on to explain that there really is no expected timeline of when you might experience cognitive changes.
To my family & friends – thanks for remaining patient with me while I navigate these changes and, yet again, try to accept a new normal.
Thanks for taking the time to learn with me –
♡ Hailey
Photo from EZ med: https://www.ezmedlearning.com/blog/cerebral-cortex-lobe-anatomy
References:
Brain irradiation and long-term cognitive disability: Current concepts. Makale, M.T., McDonald, C.R., Hattangadi-Gluth, J., Kesari, S. 2018. doi: 10.1038/nrneurol.2016.185
Brain map frontal lobes. Queensland Health. 2022. health.qld.gov.au
Cognitive Changes After Cancer Treatment. 2015-2024. https://www.livestrong.org/we-can-help/finishing-treatment/cognitive-changes-after-cancer-treatment
Frontal lobe. Cleveland Clinic. 2022. https://my.clevelandclinic.org/health/body/24501-frontal-lobe
Late effects of cancer treatment: consequences for long-term brain cancer survivors. Alemany, M., Bruna, J., Simo, M., Velasco, R. 2021. doi: 10.1093/nop/npaa039
Stupid Cancer. 2021. https://stupidcancer.org/