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Chemo Brain: An Invisible Diagnosis

Posted on Wednesday, July 5, 2017 by UVM Health Network - CVMC

People often enter into cancer treatment with the expectation that they might lose their hair, experience nausea, lose some sensation in their toes/fingers, or battle fatigue, but more patients are now learning and being counseled that they may experience changes in thinking.

This side effect of cancer treatment, while not outwardly visible, can be equally as challenging. The quotes above from my patients illustrate the added frustration patients may feel when everyone thinks they look great and must be on the mend, which might be a far cry from the patient’s every day reality.

About Chemo Brain

Known clinically as cognitive linguistic deficit, you may have heard it called chemo brain, the common term that describes patients who are experiencing cognitive linguistic challenges with cancer treatment. Once a whisper of a term, now you can google ‘chemo brain’ and come up with copious resources and references, all of which outline the same main idea: Changes in thinking before or after starting cancer treatment.

Symptoms of Chemo Brain

The symptoms that can happen with cognitive linguistic deficits are varied and diverse. The most important part (and probably the most challenging part) of nearly all of these deficits, is that they are invisible. Patients may be having difficulty with:

I always get those questions about, ‘how are you doing?’ and ‘you must be well since you’re out!’ and it’s all I can do to hold it all together.

  • memory,
  • organization and task completion,
  • staying focused,
  • multi-tasking,
  • mental fogginess,
  • taking longer than usual to complete routine tasks,
  • difficulty remembering routine tasks or conversation,
  • holding onto information,
  • and an array of other reports.

There is no one symptom for cognition that can or should be excluded from the realm of possibilities for chemo brain. Cognition cannot be seen, held or touched, but is felt heavily by those experiencing challenges in this spectrum. 

A Patient’s Own Perspective on Chemo Brain

As a Speech Language Pathologist (SLP), I understand the clinical side of chemo brain, but I feel it is even more important to value the perspective of someone living through the experience. One of my patients helped me put together some key points that we hope you find helpful:

People say to me, ’you look just fine’, and everyone always says, ‘you look so great!’

  • Chemobrain is real, yet invisible to others. Having a diagnosis of cancer and undergoing treatment of the primary disease is challenging, but the addition of other difficulties (like cognition changes), that may be happening can make recovery even more challenging. Chemobrain affects how you think, and is a real diagnosis. You are not alone.
  • There is therapy available. Speech-language pathologists are trained to evaluate and treat cognitive linguistic deficits that occur as a result of cancer or cancer treatment.
  • While knowing therapy is available is important, it is also important to discuss this area with your doctor to get an appropriate referral. Cognition is invisible and not always discussed as a potential problem in your doctor appointments.
  • Each patient is different; your symptoms may or may not match the ‘common’ symptoms that other people experience. Any changes in thinking can be considered part of chemo brain, and are real. Nothing is ‘too mild’ or ‘too severe’ to assess and work with in order to develop strategies.
  • Knowledge is power. Knowing what is going on, and talking through your challenges and strategies can be powerful.
  • If you are a family member supporting a loved one with chemo brain, your role is important. We invite family members and loved ones to be an active part of therapy.

Treatment Techniques and Strategies

Although invisible, cognitive linguistic changes are important and there are treatment techniques and strategies available to target those deficit areas.

The treatment options are as varied as symptom reports. The SLP’s role is assessing, counseling, educating, and treating the person to provide the appropriate strategies, environmental modifications, and direct intervention targeting the deficits each individual may be experiencing.

Talk with your oncologist or primary care physician today if you have any further questions or concerns about this part of your recovery.