Thanks for this post! Since 2012 I have been dealing with this issue, and has been very difficult to have Dr's recognize it, family and friends deal with it, and work to understand it.
• struggling with "chemo brain" since 2011 after neo-adjuctive, and post adjunctive treatment for rectal cancer (physically, all good since 2011!!!)
• Med Dr's others dismiss as old age, normal aging - suggested exercise
• Psychologist: hinted at PTSD, age --suggested set boundaries on what can and can not do, exercise
Disappointed to realize local medical community not aware of means to handle.
My realization is that the problem is that these subjective discussions that are being dismissed, vs having an objective means of measuring pre and post cancer mental state. We do not baseline mental state as we do physical state, and that we should baseline cognitive ability as we would do blood tests, CAT scans, scoping,etc.
I have an appointment with a Dr that specializes in brain injuries, does impairment rating evaluations, and Post-Concussion Assessment and Cognitive Testing (ImPACT). In short, treat this like a brain injury. While this can not tell me how much has changed as nothing to compare with in 2010 (pre cancer), can at least see if getting better or worse over time. Like we do for kids in school sports. Baseline, and then if an injury, can see impact.
Here is the long version:
• Takes me longer to complete non physical tasks
• Recall – specifically when need to produce fact on demand, but even if asked what is your favorite x, struggle
• Difficulty focusing
• Cognitive block – will try to do something and will freeze trying to think what need to do task – confusion(?)
• Verbal communication ( loss for word, can visualize answer, struggle to vocalize) – that spirals into harder to do (like a stutterer - how nervousness increases stuttering)
• Distracted when walk from 1 room to another to get something -Similar at work when doing a task – shifting thru computer applications, jump to new task, not complete one working one. If asked a question while doing something else, at times lose the thought pattern/task working on. Why I do not use cell in car, and ignore questions when doing something.
• Did I mention distraction - this note took me an hour to construct, as I drifted into other thoughts/tasks.
Daily impact is mostly professional - fast paced corporate environment. Job performance suffering – top rate performer now at risk of job loss. Communication and command/control of team and subject matter critical to my work impacted. At risk to lose my job, and medical community can yet able to make case for disability, nor am I sure I would want that.
• Cancer treatment – 2009 diag, 2010 treatment, 2011 done – chemo/rad, surgery, chemo
• Clean – cured – 6 years
• No major long term physical issues – low blood counts (red/whites), some neuropathy in feet, lost muscle tone/ flexibility, weight gain due to less activity.
• Issue that remains and struggling with since return to work has been cognitive issues
Actions to address:
• Discussions with Primary and Oncologists a year after treatment ended, and over course of annual exams
• Cancer support forums
• Shifted to part time work for about a year, returned when felt could handle
• From medical Dr's : “old age”, try exercise
• Psychologist: 2013 – diag was potential PTSD: that I should draw boundaries, accept what you can, try exercise,
• Diet, exercise – focus in 2015/2016 as means to improve cognitive/depression issues. Lost 20 pounds (good!) - have been running 5/10K races and completed ½ marathon
• Physically in best shape of my life, but cognitively feel same as I did as in 2011 thru 2016.
Hope this helps!
DX:T3,Nx,M0 2/5/10 RC 3cm@analverge CEA7.3
Neoadjuntive 2/24-4/5: 28 rad/Xeloda(M-F),5 rnds Oxaliplatin,IVwkly
6/15/10-TAE surgery 10 weeks aft neoadjunctive.
Path clean, CEA1.3
post surgery 12 rnds FOLFOX