It is common and frustrating for cancer survivors to experience a condition generally referred to as “brain fog.” Some people may notice difficulties with concentration, memory, and/or thinking. They may have a hard time reading a book; repeating the same paragraph over and over, or they may find themselves needing to jot down notes that will help trigger their memory. Thinking may be slower and less efficient leading to difficulties, especially when trying to multitask.
While brain fog can manifest itself both during and after treatment, you may be surprised to learn that it can even start before actual cancer treatment begins. You may have heard the term “chemo-brain” but this reference is not quite accurate in its description since the clinical entity is often the result of a combination of many factors.
Researchers have found that this condition can be caused by many different factors: the tumor itself (through the secretion of circulating agents), lingering side effects of sedation (from procedures), changes in medications, new levels of physical activity, changes in nutrition, sleep patterns, vitamin levels, hormonal changes, cancer treatments and the emotional roller coaster that all of these new stimuli bring about. People who may have been on the verge of developing sleep apnea, may find that weight gain leads to the development of full-blown sleep apnea, which results in less oxygen to the brain overnight, and then less brain function during the next day.
Dementia screening tests usually do not pick up any abnormalities, because this type of brain dysfunction tends to be more subtle. The most essential part of a work-up includes talking with a provider who will work with you to try to find out when the brain fog started, which symptoms you experience and if they change over time, and what else may be going on in your life that may be a contributing factor. Sometimes your provider may order labs, brain imaging, or even neuropsychology testing. The more dysfunction one experiences from this, the more diagnostic and therapeutic tools providers will need to explore. On very rare occasions the condition may become so bothersome that a person may need to consider special accommodations such as seeking a disability status.
In general, there is no one remedy that is able to correct the condition quickly and completely. Relief is often the result of a multi-prong approach which tackles the most significant problems that were identified through a variety of options. Talking with your provider is the best first step. They will be able to discern what course, e.g. correcting laboratory abnormalities, referencing sleep apnea issues, and addressing resources for emotional support is the best path for your individual situation. Surprisingly, exercise has been the one consistent and most potent intervention found to be a major factor in cancer survivors to help many symptoms, including brain function. While we do not yet understand the connection fully, current studies are underway to explore these findings (better perfusion of brain or toxin removing organs?). A smaller subset of individuals may benefit from provider prescribed stimulants and/or brain training exercises
As far as current evidence tells us, “brain fog” does not represent a precursor of dementia. With the proper attention and intervention, the brain can, and and in most cases will, continue to improve. This process can take time and patience, but is an achievable result!
Relevant links from major cancer organizations:
We all need (and want to!) eat. Food keeps us alive, but more than that….the activity of using our senses (taste, smell, see, touch) and eating is important to our quality of life and a significant part of socialization with our loved ones and friends…..
It can be rather confusing to know which food products, combination of foods, and preparation methods to pursue that will result in not only improved health, but also, and more importantly, do no harm! Searching for recipes and trips to the grocery store may become a time-consuming process that you dread. This can be overwhelming if you have one, or perhaps even several medical conditions that require a special diet. Education to make more sense of food labels has been provided by e.g. FDA, NIH, and the Academy of Nutrition and Dietetics. Your PCP may be able to connect you with a local (oncology) dietitian for advice (or you may be able to find a registered one here). Cancer centers may provide free access to a dietitian, and depending on the indication, your health insurance may also help in providing coverage.
Eating out can also become an adventure and a challenge. Fortunately, many restaurant menus are becoming more attuned to these dietary needs and are working to offer greater transparency by including nutritional content for calorie counters and those with food intolerances and allergies.
To put this into some perspective, although we have made great strides in the medical field, we still face the challenges of much that remains unknown, confusing, or even contradictory. New study results often raise more questions than they answer, which may be due to multiple problems.
- An early 2019 publication made headlines by stating that “among US adults, higher consumption of dietary cholesterol or eggs was significantly associated with higher risk of incident CVD and all-cause mortality in a dose-response manner”. This publication has been heavily criticized. Two articles may help provide perspective and allow you to make your own informed decisions. One is an article by the New York Times and another one by the American Heart Association (the latter predated the above mentioned publication, but nevertheless still provides valid points).
- The intake of vitamin supplements seems to have drastically increased, since popular trends suggest that they “may help, but do not harm’. However, this perception may need to be revised, since evidence has shown multivitamins can indeed harm and may actually help a tumor thrive rather than improve your overall health. As such, until we understand better, it may be wiser, to boost your vitamins in a more natural way, such as a balanced diet that healthfully includes a variety of vegetables and fruits. As always, trust your provider, especially if they specifically recommend and prescribe you to take certain supplements (e.g. when you are at risk for decreased absorption, or have been found to have low levels of vitamins B12 and D).
Another nutritional consideration may be whether or not to ‘go organic’. Organic foods are thought to contain more ‘of the good’ and less ‘of the bad’. But organic products can be less readily accessible and are often significantly costlier. You may want to prioritize your grocery list by investing in the organically produced dirty 12, and be less concerned about the clean 15.
My personal take on this is that there are many diets out there, and it is simply not possible to have a complete and accurate comparison of the benefits and flaws between them. Some diets can be expensive and may be restrictive by omitting certain food products or food groups. Until we understand more, it may be best to adopt a lifestyle that is ‘all things in moderation’. Don’t forget variety is the ‘spice of life’ and at the end of the day, we can only hope to have done our best. Our health outcomes are determined by many factors, and our diet is only one.
Allow yourself to enjoy – Bon Appetite!
As you enter the post-cancer treatment phase, you may….
- “Look better”, but you likely still have more healing to do – physically, functionally – but also emotionally and spiritually. Being told “you have cancer” and having to put your life unexpectedly and urgently on hold to undergo life-saving treatments can be traumatizing.
- Feel alone, since it may be hard for others to understand you, especially if they haven’t experienced it themselves.
- Feel like you are riding an emotional rollercoaster.
- Notice that your priorities in life are changing, perhaps even rearranging!
- Find yourself trying to balance your health and healing while minimizing disruption to your home, work, and financial status.
- Have lost trust in your body, wondering “what will happen next?”, and be searching for ways that allow you to heal and stay healthy.
- Be uncertain and concerned about what the future may hold for you and for your loved ones.
- Find yourself spending hours on “Google” trying to answer your many questions, only to discover that you have even more questions!
- Yearn to renew your pre cancer self and embrace the feeling of wholeness that may have been lost in your journey.
This juggling can be overwhelming, confusing, and stressful. You may have a large team of health care providers, but you may not always know what to do or where to direct your questions, your concerns and your needs. Your providers may not always have the time to work with you in finding the answers that you need, or the specific skills to support you and as a result, you may feel lost or abandoned in your journey.
Even though the field of cancer research and treatment field has made huge advancements towards the prevention, diagnosis, and survival of cancer patients over the last few decades, the post-treatment phase has been relatively undervalued and under-explored until recently. But the “times they are a changing” and that means good news for survivors, caregivers, and providers as well.
As a first step, to facilitate the transition of cancer survivors into the post-treatment phase [From Cancer Patient to Cancer Survivor: Lost in Transition (IOM 2005)], large organizations such as LIVESTRONG, National Coalition for Cancer Survivorship, Office of Cancer Survivorship at National Cancer Institute(https://cancercontrol.cancer.gov/ocs/), and American College of Surgeonshave identified the following five essential elements and recommend that providers incorporate these elements as an integral part of the post treatment care plan:
- Surveillance (watch for cancer recurrence)
- Screening (for new cancers)
- Assessment and management of the effects of cancer treatment(s)
- Adoption of positive health behaviors
- Care coordination between health providers
These areas represent only the first steps to assuring successful survivorship for both patients, their families and health care providers; more improvements in cancer survivorship continue to emerge as recognition of the post treatment phase evolves.
This informational site hopes to help you to navigate your unique survivorship journey and to empower you to regain control and better care for yourself.