How to Advocate for Your Chemo Brain Care

By Heather Flanagan, ARNP-C

Guest Blogger

Heather Flanagan is a board certified nurse practitioner in a private practice in Tampa, Florida. She completed her master's in nursing at the University of Florida in 2007
and has specialized in breast surgical oncology since 2008. Heather founded My Breast Cancer Answers just recently to provide support and resources for her patients and others.
The site includes printable checklists to bring to your doctors' appointments, important facts, news, a blog and a chat forum. Visit her at www.mybreastcanceranswers.com.

Chemo brain is something I had always heard about as an oncology nurse, but at first I thought it was just a cute little term coined for the forgetfulness people experience as part of their hectic treatment. I am embarrassed to admit it wasn't until last year when I realized how many women suffered from it.

There are many women I see at the office who complain of mental fogginess, forgetfulness, and difficulty working after chemotherapy. I've learned that many do not even realize they have chemo brain and the ones who do realize it, have a very difficult time seeking care for this condition. Others would have remained silent had I not brought up the subject and asked the right questions.

As a nurse I want to make sure my patients are getting what they need, so I try to recognize conditions or problems they may have as a result of their surgery and/or treatment. Unfortunately, most healthcare providers will only address a condition if you bring it up to them, so you must learn to advocate for yourself.

Chemo brain is so different because it is much like chasing a ghost. You know you see the phantom, but when you try to explain it to others, it is invisible. A phone call I received a month ago was what really prompted me to write this post. A woman, who is not a patient of mine, called my office desperately seeking advice for her chemo brain symptoms. She indicated she was unable to work, but could not find anyone to help her qualify for disability based on chemo brain. I realized at this point that I did not know enough about chemo brain and thus began my ghost hunt. I'd like to share with you what I've learned.

I understand the majority of you reading this blog are well versed in chemo brain and I know that many of you have read Idelle and Dan's book, "Your Brain After Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus." I don't want to leave anyone out though, so I will include some basic knowledge.

What is chemo brain?
Technically speaking, chemo brain is a set of symptoms experienced by people after going through chemotherapy. The symptoms involve memory loss, forgetfulness, foggy thinking, etc. Chemo brain may last for several months or even years in some cases and symptoms vary greatly from person to person in both presentation and severity.

While all this seems fairly simple, many healthcare providers either do not know about chemo brain or feel it does not really exist. The dilemma for those affected is how to get help when their doctors don't believe it's a real diagnosis. If you're a newbie to chemo brain you may want to refer to this list of common symptoms.

What You Can Do
The first step is to make your ghost visible to your healthcare provider by listing your symptoms.

The second step is to keep a log/journal for a month starting from when the symptoms began. This will help you and your doctor see frequency and what aspects of your life are affected most. You may be surprised by how often symptoms interfere with your daily activities! Also, a healthcare professional will have a harder time dismissing your claims if you have your symptoms written down in an organized way.

Last, your journal will serve as legal documentation should you need it for disability.

Did you know that many people affected with chemo brain still score normally on cognitive tests? As a result, this condition may be diagnosed only after your doctor rules out other factors. Some other causes for your forgetfulness, foggy thinking etc. may include: anemia, hormonal changes associated with menopause, insomnia, and depression. These conditions may make chemo brain worse if they are present. Make sure to meet with your healthcare provider to have blood tests to rule out anemia and see if you are in menopause. You may find it helpful to keep track of number of hours you sleep per night and any difficulty you have sleeping. Consider taking a quiz to see if you could be depressed.

Seeing a Neuropsychologist
You will want to see a neuropsychologist, a person who specializes in treating conditions where memory and thinking are affected, to help you cope with chemo brain and get your life back. Ask your doctor for a referral.

A neuropsychologist may recommend stress relief techniques, coping strategies, cognitive exercises and tracking what makes your memory problems worse. Having chemo brain can be stressful and stress can lead to memory problems. You can help break this cycle by making sure you are nourished, rested, and well-organized prior to any stressful event.

Supplements and Medications
There are no supplements or medications specifically approved to treat chemo brain but some experts recommend Omega 3 fatty acids. Talk to your doctor about this. Some medications prescribed for other conditions may help as well. These include: Ritalin and Concerta used to treat attention-deficit/hyperactivity disorder (ADHD); Aricept, which is a medication for Alzheimer's; and Provigil, used to treat sleep disorders. You'll find a complete list in "Your Brain After Chemo."

Remember, the squeaky wheel gets the grease, so bring up your symptoms and discuss chemo brain with your healthcare provider. You are, after all, your best advocate.

Make sure you check out www.mybreastcanceranswers.com for all the latest and greatest in the breast cancer world. We look forward to having you as a part of our community!

Your Friend,

Heather
Founder, My Breast Cancer Answers

Additional Resource: Mayo Clinic