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Breast Cancer Survivors May Have 20 Years of Chemobrain

By February 29, 2012

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Chemo Decision
Photo Lisa F. Young from FOTOLIA

I'm approaching my 10-year cancer-versary - diagnosed in March of 2002 with breast cancer. At first, I blamed my stress after the terrorist attacks of 9/11. But my breast lump was there before that, silently invading tender tissues that should have been left alone. My first oncologist was a rotten communicator. He usually looked at my chart just seconds after he came into my exam room, and his eyes rarely left the chart. He put me on FAC chemo, saying that it would lower my risk of recurrence. But when I asked what 5-fluorouracil - the F drug - was, he said, "Its just an innocuous drug. Nothing to worry about." I wanted to know more about Cytoxan - the C drug - and he just handed me an info sheet from the drug company. And I also had Adriamycin - the Red Devil - to look forward to, as well as the loss of my hip-length blonde hair. Neither the doc, nor his assistant, nor the infusion nurses told me much about chemobrain - they just showed me a video during my first infusion, which made chemo time look like some kind of a stay-cation. If I sound a little bitter, well, I am.

Chemobrain hits many of us, some worse than others. It can whack your short-term memory, make you indecisive, limit your ability to multitask. Gee, maybe it even causes me to make more typos! You can cope with it, but you'll always be thinking, "When am I gonna get my brains back in gear? When will I feel like my old, competent self again?" Chemobrain is undeniably real - you can read what a neuroscientist and a survivor-journalist have uncovered in the book, "Your Brain After Chemo" - brain images even show the changes that chemo causes. So it's not just all in your head, but of course other things like menopause, low levels of estrogen, and age-related dementia may also be blamed for cognitive changes. I was told that my fuzzy thinking due to chemo would wear off soon after treatment. You know, the drugs eventually fade out of your system, and you get healthy again, right?

So now I read about this new study from the Netherlands Cancer Institute, saying that chemobrain can still be working its magic on my neurons for up to 20 years! Wow - 196 women were in this study, and they were treated with - wait for it - cyclophosphamide (cytoxan), methotrexate and 5-fluorouracil. I score on two out of three. The time period covers 1976 and 1995, the patients were between ages 50 to 80, and they scored badly on memory tests and had more complaints of depression. Please, tell me something encouraging! Dr. Tim Ahles, a neurocognitive expert at Memorial Sloan-Kettering Cancer Center, says that chemobrain varies from patient to patient - so it is not a guarantee that chemo will mess with everybody's brain - not to the same extent, anyway. "If someone is a professional who has an extremely demanding job, even a small change may be problematic, whereas for someone who is retired and has a more relaxed lifestyle, it may be less of a problem," Dr. Ahles said. "For women who are newly diagnosed and looking at treatments, it is still important to know that not everyone experiences these deficits."

We have so many trade-offs to juggle, when we are newly diagnosed with breast cancer - surgery options, chemo, radiation, hormonal drugs. All the treatments have side effects, but they also have benefits. I've lived ten years now, missing one breast, going for checkups, coping with some depression - but I have lived! My father is 86 and lives with us - he has some type of dementia - and we are making up for years that we lost due to a long estrangement. Chemo may have given me chemobrain, but it also gave me more years to help others. I'll take that.

How do you feel about chemobrain? Please leave a comment.

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March 1, 2012 at 6:22 am
(1) Sandra Wade says:

I agree with you Lisa, chemobrain is definitively understated by oncologist and nurses. I’m sorry your doctors’ bed-side manners and poor communication contributed to your struggle from this insidious disease.

I too am approaching my 10th year cancer-versary on april 5, 2012. Chemo-brain makes me feel like a zombie, alive but half-dead living in a fog. Unfortunately, I was told by my oncologist that for every year of treatments it take an equal amount of years to completely recover from side effects. I work hard on reclaiming my brain and it’s functions by doing brain exercises. There is no doubt that chemo-brain has diminished my capacity to work and think like I use to – in a big way.

But what I’m really angry about is not so much what has been done to me and the damage it has done but the fact that no doctor seems to be interested in helping me (and others) with cancer rehabilitation. I have 4th stage inflammatory breast cancer and my doctor seems to think I’m unappreciative that I’m alive. I am grateful however, 10 years later and I still have 4th stage IBC plus 6 additional chronic and life-threatening diseases and other conditions as a direct result of damage done by years of aggressive treatments.

My chemotherapy had to be stopped because of damage done to my heart. I’ve been off all treatments for approximately 14 months. During this time I began researching to find help for all my ailments. I’ve learned a lot about Survivorship Care Plans and programs. You should check it out. It’s really helping me with all the chemo-brain and other issues.


February 15, 2013 at 10:09 pm
(2) Gillian McKendrick says:

Lisa, I understand your concerns about chemo brain. I too have had the red devil, associated memory loss, etc. however, I have only had 32 months since diagnosis. Today I found out the cancer has entered my brain. Lisa, consider yourself fortunate that you have had ten years of living with cancer. That is still my dream but looking more and more unlikely. If the trade off is I have chemo brain and other non completely debilitating symptoms to get my ten years,I will choose the chemo brain every time. Of course I understand that each persons experience is different and I thank god for the loving, kind, and caring health care team I have at Cambridge memorial hospital in Ontario Canada. I wish you the best but try not to be angry. The only person that will hurt s yourself and you can afford to do that for health reasons.

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