Is "Chemo Brain" a Disability Under the Americans With Disabilities Act (ADA)?

People often report debilitating cognitive issues following treatment for cancer.  I wondered, are there legal protections available to them if they can no longer work?

To find out, I spoke with Joanna Morales, an attorney and the former director of the Cancer Legal Resource Center (CLRC), a national, joint program of the Disability Rights Legal Center and Loyola Law School Los Angeles.
The CLRC provides free information and resources on cancer-related legal issues to cancer survivors, caregivers, health care professionals, employers, and others coping with cancer.  I hope you find the information helpful.  -- Originally published in 2010 but worth repeating.

UCLA Cognitive Rehabilitation Study Needs Participants

I've been asked to post information about UCLA's cognitive rehabilitation study for anyone in the Los Angeles area who might like to participate.

ASCO, WHERE HAVE YOU BEEN?

The organization that sets standards for cancer care does not include cognitive issues in their patient consent document 

Last Thursday I was in Arlington, VA at the National Cancer Institute’s 6th Biennial Cancer Survivorship Research Conference. I had been asked to speak about cancer and cognition. Specifically, the organizers wanted me to comment on the “disconnect” between the research/medical community and the patient experience.

Cognitive Effects of CMF May Last 20 Years

In a study reported yesterday in the Journal of Clinical Oncology, researchers found that breast cancer patients who received the chemotherapy regimen CMF between 1976 and 1995, scored significantly worse on tests of word recall, information processing speed, and psychomotor speed (coordinating and inserting pegs into a board) than a control group of women who had no history of cancer.

What’s Another Name for Chemo Brain?

We follow the New York Times style guidelines and spell it as two words: chemo brain. I’ve also seen it as one word: chemobrain, or chemo-brain.  Others call it, “chemonesia,” or “cancer brain fog.”

Another Study: Changes in Cerebral White Matter After Chemo

Researchers (Sabine Deprez, MD, et. al.) at a university hospital in Belgium have added to significant evidence that cancer treatment affects attention, concentration, memory and how quickly we process information (psychomotor speed). It also decreases white matter in the frontal, parietal and occipital regions of the brain. Their study appeared this week in the online version of the Journal of Clinical Oncology.

Learning Ukulele Has Helped My Memory

By Lori Nakamura
Aiea, Hawaii

I was 39 years old when I was diagnosed with triple negative breast cancer. I went through 5 cycles of chemo, and still today endure the lingering effects of chemo brain.

Fortunately, I have a friend who told me about the Hands On Healing program. She explained that Roy Sakuma Ukulele Studios offers free lessons to cancer survivors. Adding to the joy of learning to play the ukulele, my two daughters were able to sign up for lessons as well. Next month makes two years since we've taken up ukulele, and it will be 5 years since my surgery and treatments.

Chemo Brain May Last 5 Years or Longer After Stem Cell Transplant

Hi Everyone,

There's new research out, this time from Fred Hutchinson Cancer Center.  Karen Syrjala, PhD, and her team of scientists have found that patients who have undergone chemotherapy prior to receiving stem cell or bone marrow transplants to treat blood cancers, may suffer from some symptoms of chemo brain that are far more severe and long lasting than has generally been reported.

Her Employer Let Her Go After Cognitive Problems at Work

By Karen B.

Madison, WI

Guest Blogger

I am 59 years young.  I was diagnosed in July 2008 with stage 3A breast cancer.  I had a lumpectomy followed by a mastectomy because my margins were not clean, had chemo Adriamycin, Cytoxan and Taxol, followed by six weeks of radiation treatment.  I've been on the anti-hormonal drug Arimidex since May 2009.

After Chemotherapy for Breast Cancer, My World is Flat, Colorless

By Lisa Iovino-Lewis

Los Angeles County, CA
Guest Blogger

Although I seem vibrant, my entire life has changed because of chemo brain.  Three years ago, just before my 47th birthday, I was diagnosed with stage 3B ductal breast cancer. While going through 6 rounds of TAC (taxotere, adriamycin and cyclophosphamide) protocol, my brain took a journey I was not expecting.

Have Chemo Brain? Tell Your Story Like a Caveman (or Cave Woman)

By

Idelle Davidson

For those of us who have traveled through cancer or are experiencing it now, how does sharing our stories help us find our way? The answer lies in validating each other's thoughts and feelings so that no one feels isolated and alone. The answer lies in connection, in community.

Testing for "Chemo Brain" as a Disability

[You may have seen my recent interview with Joanna Morales of the Cancer Legal Resource Center.  Joanna very kindly answered my questions about workplace protections for people with "chemo brain" and she did a fabulous job (See October 4, 2010).

In this week's post, prominent clinical psychologist Robert Ferguson, PhD, discusses how difficult it has been for scientists in general to define cognitive "disability."  He zooms in a bit on one of his case studies.

Cognitive Changes After Treatment

In this video, the director of the Lance Armstrong Foundation Adult Survivorship Program at Dana-Farber Cancer Institute interviews psychologist Mary-Ellen Meadows about "chemo brain." Dr. Meadows also works at Dana-Farber. You'll find some basic but good information here, much of it covered in Your Brain After Chemo.

A Misleading Headline About Chemo Brain?

Okay, maybe it's just me but a headline from last week's story in the New York Times about "chemo brain," left me baffled and concerned enough about accuracy that I posted a comment stating as much on the New York Times Well blog.

A Book for Young Adults With Cancer

I just finished reading a book that I'd like to recommend called, "Everything Changes: The Insider's Guide to Cancer in Your 20s and 30s" by Kairol Rosenthal.

Chemotherapy Alters Brain Tissue in Breast Cancer Patients, Say Indiana University Researchers

Dear Readers, 

Before you read the press release below, I'd like you to know that the concept of using brain scans to connect the dots between chemotherapy and cognitive dysfunction is not new.  

What is new is that this study was "prospective," meaning "over time."  Whereas in other studies the participants had already been through some amount of chemotherapy or had completed treatment years prior, Dr. Saykin and his team did a "before" and "after." They scanned patients prior to undergoing chemo or radiation and then at two points after going through chemo. So they had some good data comparing the changes in brain tissue.

Stand Up 2 Cancer AND "Chemo Brain"

From

Marcia Cohee

Saw the Stand Up 2 Cancer program last week, and just bawled, terrified. It broke down all those little defenses that say "Oh, cancer wasn't so bad." It was. And is. Chemotherapy has taken my concentration, my ability to write and my energy to crawl to poetry readings. The greatest tragedy is not that I am sick, but that I am one of millions of cancer "survivors" who are now sick and disabled.

Marcia Cohee is the author of four collections of poems which she wrote prior to experiencing"chemo brain."  Her collection, "Story," is available through Amazon and her publisher.  She will be reading at the Ugly Mug Cafe in Orange, CA on November 3, 2010.

What was your reaction to Stand Up 2 Cancer's telethon? Click on the COMMENTS box below and let us know.

A Note From Bobbi

You saved my life a few years back after listening to your and Dr Silverman's webcast talking about chemo brain.  My oncologist saved my physical life but you saved my emotional life.

A Breast Cancer Survivor Asks: Will My Mind Return to Normal? [From Susan]

Hi,
I was diagnosed with breast cancer over seven years ago and underwent a lumpectomy, chemo and radiation.  Immediately after my first chemo, I experienced severe difficulties remembering things and felt like I was definitely  not on top of my game.  I was immediately placed on disability for my "cognitive deficit"  because I was unable to perform my job as a medical sales representative. I have been seen by many specialists, including a neurologist, neuropsychologist and even had brain scans. I have gone to physical, occupational and cognitive therapy.  Basically, I have suffered loss of a job, a financially secure retirement, loss of respect from family and friends because they have no idea what has happened to me.  And although I have tried to advocate for gaining back some brain cells...I have become very discouraged. Will I ever get better?? -- Susan

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 A RESPONSE FROM 

DR. ROB FERGUSON

 Hello Susan,

You are certainly not alone.  In general, it is believed about 40% of people who have had chemotherapy can have mild to moderate dysfunction with memory and/or attention, well beyond the time of last chemotherapy.   Evidence from research suggests these problems do not get progressively worse, such as might be expected with forms of dementia or Alzheimer's Disease.  However, some research suggests these problems are long lasting over years.

Word Retrieval: How Chemotherapy Changes the Way You Think, Part 4

By

Idelle Davidson

It's right there on the tip of your tongue.  It's a word that has a "ka" sound in the beginning and a "tah" sound somewhere at the end.  And you can almost see it, but then darn, it's gone.  Perhaps later, when you're rushing to slap dinner on the table, that stupid word, so maddeningly elusive just hours before will pop right into your head, as if it were all just a silly misunderstanding between you and your brain.