One of the scariest side effects of ongoing cancer treatment, for me, is the affect on my cognitive abilities. There’s a fancy term for this — treatment related cognitive impairment — but most people call this “chemo brain.” For me, it was years after IV chemotherapy when a physical medicine doctor finally noticed that I was struggling to find the right words to describe my symptoms and referred me for testing that I had no idea existed. The neuropsychological evaluation I underwent confirmed my lived experience and I wrote a little about the treatment I underwent and it’s results in this blog post.
One aspect of living with Stage IV Metastatic Breast Cancer (MBC) that complicates everything is that it becomes extremely difficult to determine what is “normal human stuff” and what is related to cancer or the treatment for cancer. We often joke a little in our support groups that it’s such a relief to be diagnosed with normal human stuff rather than something related to cancer or the treatment. Also, normal aging symptoms are often seen as a privilege since growing old is something that is denied to many of us, especially those of us who were diagnosed pre-menopausal, so that makes these issues even more complicated.
Knowing how long it took and how my own cognitive symptoms were sidelined in favor of addressing more of the physical symptoms by me and my medical team, I truly wonder how any of us can tease out causation. I came across this article, which discusses the differences between normal aging changes and actual cognitive decline that would need to be addressed. A big takeaway from this article is the importance of being open and honest about struggles with one’s caregivers and medical team.
Here are some of the most common issues of cognitive impairment that I’ve seen discussed :
- Executive Functioning Issues/Brain Fog — I’ve not met anyone who has dealt with chemo who didn’t report feeling in a fog at times. The lack of clarity of thought and lack of motivation is an issue that can be episodic or systematic. Whichever it is, admitting that this issue is occurring can be really shaming, especially for high achievers. But we can’t get help if we don’t bring up our struggles.
- Can’t Multitask — juggling life and treatment is a big deal and the ability to carry the same amount of responsibilities and tasks prior to and after a cancer diagnosis can be seriously affected. The ability to focus on multiple tasks and do each well is tied to executive functioning, which is one of the most affected parts of the brain from chemotherapy.
- Forgetting Words — I think this is one of the trickiest parts to figure out since forgetting words can also be a normal part of aging. It is clearer to connect forgetting words to “chemo brain” when the patient is younger and not yet likely affected by the normal aging of the brain.
- PTSD — while it may not be diagnosed by a mental health professional, I strongly believe that anyone diagnosed with cancer and/or undergoes treatment through chemotherapy experiences the symptoms of post-traumatic stress, which can rise to the level of a disorder, especially over time. The triggers from all five senses and experiences in the infusion center can be overwhelming, cause panic, and a whole host of other issues that are often ignored or left untreated.
I’m sure there are many other things that patient struggle with under this header and it is extremely difficult to figure out the cause. All too often, access to a diagnosis or treatment for these issues can be so daunting to be all but impossible and that’s before funding issues come into play.
The bottom line for me is that cognitive impairment is real and it is debilitating and there are ways of addressing and treating it.
This is one of my biggest concerns. If I get a pain in my leg, is it the bone mets or is it arthritis? I can handle arthritis pain; not too sure I can handle cancer pain without help. And my brain! I’ve already had a meningioma removed a year after initial treatment. My onc at the time said it was chemo brain and the nurses said I was just taking longer to recover from treatment. Not so. I was not thinking or acting clearly. It scares me to think that could happen again.
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Knowing what to look for and being vigilant appear to be the most important things to me. It’s a scary thing, I agree.
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I also experienced cognitive decline during and following chemo. It’s frightening, but you’re right that there are ways to address this unpleasant side effect of treatment.
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It’s not easy, but yes, there are options!
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