Chemobrain is real

It's great to see all the new research on chemobrain, and we are happy to give you an update on that information for your own journey in the Spring issue in "Lifting the Fog." Of course, I've known since 1989 that this phenomenon is real. We often talked about shared symptoms in my support group, and we were all equally frustrated not to be taken seriously by our oncologists. They said it was all about estrogen or some other random connection. It was irritating to offer observations that were dismissed because we were only patients!That's one reason I was also excited by this story and by a conversation I had with the writer Elaine Schattner. There is evidence that research into chemobrain was one of the first - if not the first - long-term effect that began being researched because patients were self reporting a problem. That means that the docs heard it often enough from us that they began to believe there was a legitimate problem, and that led to research. There are still those out there who say it's too hard to tell if chemobrain is connected directly to the treatment because there are so many things in the cancer experience that can case cognitive problems, but now the research is even overriding that argument. As one researcher said in the story, 26 years ago she was just giving patients memory tests and today her research is adding to the body of knowledge that this is real. But we can't stop there. We need to figure out how to deal with chemobrain, and, at the very least, patients need to be told from the outset that mental and physical fog could be a side effect of their treatment. For those whose livelihood is connected to doing a task that requires detail and constant updating of intricate information, chemobrain is no laughing matter. It could be the side effect that ends a career. For this reason, patients need to know this information to determine benefit versus risk. If chemotherapy will save your life, there is not debate, but what if it's being given when it decreases your risk of recurrence by 5 percent. Is it worth it in the profession you have chosen?Idelle Davidson and Dan Silverman tell some of these stories in their book Your Brain after Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus. I often blame chemobrain for forgetting something and laugh it off, but after reading some of the stories in this book, it will be hard to treat it lightly again. I will think of those like my friend the attorney who couldn't call up words as easily after treatment. When standing in front of a judge and jury, talking on your feet on behalf of your client is critical and chemobrain can make that mental word search impossible. Name a profession and you can see where this after effect could have major negative impact. For some of us the mental fog doesn't last long – at least I don't think it did. I don't have anything to compare my life to other than going through chemotherapy at age 37. I clearly remember the frustration at not being able to do my weekly shopping from a mental list. For me it was just the irritation of having to write it out. For some this long-term effect can have devastating results. There is another message here. Tell your oncologist about side effects you experience. Keep a log, write it down. They will act, albeit slowly, when enough patients point out the same issue.