Thursday, June 5, 2014

Wanted: Chemo Brain Rehab Programs - An Open Letter to Cancer Centers

As a science writer who went through cancer and post-treatment fog and then wrote a book about the “chemo brain” phenomenon, I can tell you there is enormous frustration in the cancer community over the lack of systems to help with quality of life.
Long after hair grows back, long after nausea and neuropathy are things of the past, many still grapple with memory, concentration, and word retrieval problems, and the inability to multitask. In some cases, these deficits linger not for months, but for years.

I know this because people tell me.  Their words are poignant and heartbreaking. They are thankful to be alive but struggle with day-to-day functioning and quick thinking. Jobs and livelihoods are at stake. There is discord at home because simple tasks go unfinished. Their families grow resentful. 

All hope I’ll have answers. But I don’t. No one really does. The best I can do is point them to the research and possible ways to cope culled from different disciplines.

I am aware of the scientific advances being made on our behalf and I am grateful. In 2007, when I first started reporting on chemo brain, many doctors considered the idea of cancer-related or cancer-treatment-related cognitive impairment a figment of the imagination, discounting patient reports of memory problems. Without medical support, patients literally thought they were going out of their minds.

Now that the literature is finally validating patient complaints, doctors are more sympathetic (although many still are concerned more with cure rates than quality of life). And while that may be comforting to some, what we need now is not the psycho-babble talk that patients should become accustomed to a “new normal” (an understandable but insulting term) but real concrete help to recapture our normal selves as we were pre-diagnosis.

That’s why we need intervention programs. Until the scientific story changes, until targeted therapies cure cancer while leaving our minds intact, cognitive rehabilitation can provide tools to help compensate for some of these deficits.

In the next few weeks I will be posting information about programs and workshops. Is there one at your cancer treatment center? If so, let me know and I will add it to the list.

1 comment:

  1. I had 4 rounds of two types chemo & 4 rounds of one type chemo followed by 33 radiation treatments. Three months after I was diagnosed with Hashimotos thyroiditis which is now under control. Most of the severe symptoms from breast cancer treatment have subsided but I am still left with joint pain, stiffness, fatigue & CHEMO BRAIN! My incredible oncologist has assured me this will all get better, but I have been starting to wonder if I had the beginnings of dementia. She has referred me to neurology (mainly because my long term insurance says I'm no longer disabled), but also to reassure me. Reading thru this info has reassured me my Oncologist is right on top of things as she has been all along and I am getting the best care possible. Thank you!!!