So, is there a difference between “chemo brain” and “brain fog?” Well, medically speaking, no.
According to the Mayo Clinic, “Chemo brain is a common term used by cancer survivors to describe thinking and memory problems that can occur after cancer treatment. Chemo brain also can be called chemo fog, chemotherapy-related cognitive impairment, or cognitive dysfunction. Though chemo brain is a widely-used term, it’s misleading.”
The Mayo Clinic’s explanation continues: “It’s unlikely that chemotherapy is the sole cause of concentration and memory problems in cancer survivors. Researchers are working to understand the memory changes that people with cancer experience.”
So, there you have it! Right? Well, I am going to discuss another type of “The Fog.” It’s more like “Dazed and Confused.” (Geesh! I am really good with movie analogies, huh? Both great movies, but one was a horror movie and the other was a comedy.) Basically, that is what my story is like, too. Just add some drama, action, a bit of horror and, of course, comedy. Oscar worthy, right?
First we are going to talk about my type of fog, which isn’t the same as what the Mayo Clinic is talking about. My variety of fog came to me in November 2012. It started when the doctor said “Steve, you have breast cancer.” I instantly was in a fog, and I think it took about a year to get out of it. When he stated those words, I don’t remember leaving the office, I don’t remember him and the nurses telling me anything else. Nothing. All I remember is standing in front of the elevators calling my best friend Jamie in Columbus, telling him the results.
From that point on until six months after my chemo, I was in a weird place. I can’t explain it, but my thinking wasn’t clear. When I recall that time, it is just a blur. It happened so fast that I don’t remember much. Maybe it’s because I am blocking it, because I can remember other things before my cancer really well, but not much during that post-diagnosis time. I’m glad I kept a journal, but after a few weeks, I stopped writing in it. Not sure why.
Chemo brain is a very interesting phenomenon and it is true, no matter what others might say. Because, I really think chemo, that poison, did something to our thinking, our cognitive reasoning and so on. I can tell you a few things that have happened to me.
As I was looking at the letter “W “ I couldn’t say it. I didn’t know what that letter was to me even though I kept saying in my head, “This is so weird and wrong.” I even sang the alphabet song and got stuck after the letter “V.” I didn’t know what to say. It actually took me a few hours to figure it out.
Another time, I was at the grocery store to pick up some fried chicken at the deli counter and couldn’t tell the clerk that I wanted a chicken breast because I didn’t know what it was. I couldn’t get the word to come out. I had to take a step back, think about it, and then I was OK.
Other times, I left my house without any shoes on and it took me a moment to realize it. I had to put Post-it notes on my front door to make sure that before I left the house I had my cell phone, shoes on, iron turned off, and other things. Also, I couldn’t remember if I locked the front door even though I would say aloud that I was locking the door.
And I can’t remember the names of friends I have known for more than a dozen years. I can see their faces, but not their names. Maybe it is because I am getting older? Whatever it is, more research needs to be done. It is really frustrating and embarrassing, too.
But I can say this: Things have started to get better. It has been months since I had a major memory obstacle. However, I still find some trouble getting my words out. And for those who are still battling chemo brain, please know it will get better. I know it is frustrating. Hopefully, in time it will go away. But I honestly think I always will have some of it left in me.
In conclusion … crap! I forgot what I was going to say. Where are my shoes? I’m in my car. Wait, this isn’t my car!
Anyway, now I remember what I was going to say. Peace and love to all.
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[My name is Steve Del Gardo. Breast Cancer Survivor. Warrior of Life. www.protectthepecs.org]
Note: Breast Cancer News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Breast Cancer News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to breast cancer.
Thanks, Steve, for sharing your thoughts on this topic. Chances are, that this is more common than we know.
My chemo began in Nov. 2002 at age 52, and can easily say “ditto” to most of what you spoke of in the article. My fog started during chemo. While in the hospital for septic shock from chemo, a close friend came to visit. I still recall her standing by my bed, conversing about odds and ends. I was looking at her and thinking, “I could in no way, shape or form, repeat back to anyone, what she is saying to me.” I couldn’t form thoughts or express them. It was hard to digest what she was even talking about.
Now, after approaching 15 years post chemo, the fog has lessened/changed, somewhat, but still today it is a major problem for me and increasing in severity. Here’s a short story/example…About a year after chemo, I could not recall the words for “Empire State Building.” My family had been there a few years prior, but I could NOT recall the name of this well known place/building. I was determined to remember, and didn’t want to “cheat” by using the computer for help. I can’t remember now (!), how I eventually figured it out, but the computer most likely provided me with the answer.
That scenario has played out OFTEN/daily through the years to some degree or another. Usually after waiting for 5 or 10 minutes, I will be able to recall the missing word. Early on, when telling my sister about not being able to recall the “Empire State Building” she tried to reassure me that this was probably normal…I was “aging” ; this type of thing happens to her, sometime, too. I appreciated her effort to calm my anxieties, but I knew it was different than what she had described.
Numbers also changed for me. When looking at the price of something in a store, I am very apt to see it differently than what is written. As a result, I am very careful to study the numbers, especially on bigger ticket items, if it is important to really know the cost. This is not true all of the time, but I am aware that I need to be careful.
Another change that started right after chemo…it seems I have a newly acquired form of dyslexia! Numbers/letters aren’t always in the correct order, when writing or typing. As I type right now, I’ve had to frequently correct errors when putting letters in the wrong order. Weird. I’ve asked the docs about it, but they look at me like they have no idea, and I doubt that it’s been mentioned by many patients. I tend to be a patient with many questions. I want to know the “why” of things, whereas it may be more common for patients to listen but not ask (much.)
At about 4 years post chemo, my onc sent me to another doc for further testing/answers regarding my ongoing questioning of my memory. (I had had yearly MRI’s of the brain, due to my ongoing concern that the cancer might metastasize to the brain.) The MRI showed more “cerebral infarction’s” (an area of necrotic tissue in the brain resulting from a blockage or narrowing in the arteries supplying blood and oxygen to the brain) than most people my age.
My cancer had a “poor prognosis” as it was Her2+. (Since that time, great progress has been made on treatment for this type of cancer.) So when the doc showed/explained the infarctions to me on the computer, I was thrilled that these “things” were not cancer, so I left his office counting my blessings.
Of course, I now understand the seriousness of infarctions, so I continue to worry about my poorly functioning brain. In addition, an MRI done 2012, showed “mild atrophy” which is brain shrinkage.
My regular onc told me not to worry about it and that I didn’t have dementia. I wanted to believe his encouragement, but I’m afraid today to have another MRI to see how much it has progressed.
Bottom line, how much, if any of the changes in memory, infarctions and brain atrophy were caused from chemo? I had FEC chemo; 5 fluorouracil (also known as 5FU), epirubicin and cyclophosphamide. Epirubicin was nicknamed the “red devil” because of it’s color and it’s very nasty…which is great if it kills cancer cells. 2 years post chemo, I had “late” Herceptin.
I hope you get other replies to this conversation, as it is interesting and very concerning to those who suffer with memory changes after cancer treatment. I am VERY THANKFUL for the cancer to be in remission, that is a result of the treatment I had. I know, too, that since 2002, MANY positive changes in medicine have been used for treating all kinds of cancer. Thank you, thank you, to the many people involved in better treatment/prognosis for all types of medical conditions!
I realised chemo had affected my memory but never heard from anyone in the same boat. I do worry about the long term affects, I had tr eatment nearly 5 years ago, similar type of cancer to the writer above. Am also grateful for being in remission. But fearful of brain shrinkage and brain fog.