"I feel my brain is not my own" - this article makes me feel a LOT better!

After chemotherapy, patients can experience huge cognitive problems. For many, it's the last straw. Lucy Atkins reports;

The Guardian, Tuesday 21 April 2009

Susan Sontag likened hers to the symptoms of a stroke, while Kylie Minogue complained that it made her forget everything. Welcome to chemobrain or, less catchily, "cancer treatment-related change in cognitive function" - a widespread problem for cancer patients which, until recently, has been largely ignored by clinicians.

For many, it's the last straw after months of treatment. You might struggle to find the right word for an object or be unable to follow a fast-paced conversation. Or you might have trouble multitasking. You might even forget your own phone number. More than just irritating, these occurrences can shake your confidence, damage your career, upset your social and family lives and, in extremis, even put you in danger.

Joanne Redford, 37, was diagnosed with breast cancer when her second child was 10 months old. Through 18 months of chemotherapy, she stayed positive. But now, one year on, she says, "I feel like my brain is not my own. Socially, her confidence is at rock bottom. "I'm nervous about striking up a conversation with anyone new these days. I think, 'What if I forget what I'm talking about?'"

Until now Redford has told nobody about these symptoms - not even her husband. "I just try to cover it up," she says. "People think that because the treatment has finished, you are fine. That you feel lucky to be alive. They don't realise what you are still going through."

Not everyone who undergoes cancer treatment experiences chemobrain, although no official figures exist on what proportion of people are affected, and research into the causes is in its infancy. However, one of the most recent studies on the subject, according to Ellen Clegg, Boston-based author of a new and controversial book, Chemobrain: How Cancer Therapies Can Affect Your Mind, suggests that the problem could be the result of chemotherapy temporarily damaging the brain's ability to grow new cells (the progenitor cells). "Some doctors are looking at whether chemotherapy agents influence the blood-brain barrier [whereby chemicals or bacteria in the bloodstream cannot pass into the neural tissue], or actually cross it, causing damage to brain cells," she says.

Clegg believes that doctors in America do not tell patients about these theories because they, understandably, do not want to put people off life-saving treatments. Consequently, she says, there is widespread distress and confusion. "Patients wonder what is going on, when their hair grows back and fatigue abates, but a spaced-out feeling lingers."

The issue is starting to be taken more seriously in the medical arena, with new studies springing up worldwide. According to Emma Pennery, clinical director at Breast Cancer Care, awareness of the problem is growing among oncologists. Clegg puts this down to patients who are refusing to be fobbed off. "When patients ask to be heard and doctors listen," she says, "it can be transformative."

"Some doctors are investigating whether the cancer itself is causing chemobrain effects," says Clegg. "Certain cancers may release metabolic products that could cause these symptoms, or the symptoms could be part of the body's immune response to the cancer." Elsewhere, researchers are investigating whether the symptoms in women could be related to lowered oestrogen levels caused by chemotherapy. "It is very difficult to untangle contributing factors," says Pennery. "There are so many different types of cancer treatment and these can all cause stress, depression and profound fatigue, all of which can affect your memory, concentration and ability to focus."

Pennery says that women who call the Breast Cancer Care helpline often complain that doctors dismiss these symptoms, "or put them down to stress, depression, fatigue or the menopause." When they hear that there may be concrete physical causes, and that the condition usually abates a year or two after the chemo finishes, their relief is palpable.

Chemobrain ... How to cope with the effects:
• Discuss symptoms with your clinician or specialist care team – don't try to hide them.
• Get help with other supposedly "manageable" chemotherapy side-effects that can have a knock-on effect, such as night sweats, which disturb sleep, which in turn can reduce cognitive function.
• Stay organised. Use calendars or planners and write everything down.
• Take frequent breaks: divide tasks up, and rest each time you complete a part.
• Exercise your brain: do crossword puzzles and number games, take up a new hobby, or learn a new skill.
• Exercise your body: moderate exercise can help with stress, fatigue and depression.
• Hang on in there: studies show that symptoms lessen a year after chemotherapy and decrease even more two years on.