Watching my little brain tumour grow slowly over the past decade has been an extraordinary exercise in courage, patience, gratitude, and faith.
I learned about my tumour by accident in 2003 around my 50th birthday when I'd had an MRI scan after collapsing from drinking too much water during a marathon.
Fortunately, my tumour is a benign and generally slow-growing type called an acoustic neuroma. Located inside my skull on the nerve responsible for hearing and balance, it measured just three millimetres - about the size of a sesame seed - when discovered. Although I had no symptoms, an expert I consulted recommended two possible treatments: surgery to remove it or radiation to stop its growth. While this tumour wouldn't metastasize, its growth could impair my facial nerves, balance and hearing, or even threaten crucial brain function. She advised acting early when the tumour was small. Instead, I decided on a course of action known as "watch and wait."
Also called "expectant management," "active surveillance," and "watchful waiting," this involves closely monitoring an ailment but withholding treatment unless symptoms appear or progress. Often used with slow-growing or precancerous lesions and with conditions where treatment risks may outweigh benefits, this strategy does not mean doing nothing. It involves regular checkups - which could mean blood tests, biopsies or imaging scans, all involving some physical, emotional and financial stress. And it requires a tolerance for uncertainty, the willingness to live with something that could be a ticking time bomb or a harmless growth.
Over a decade of watchful waiting, I've had 10 MRIs. Each of these scans was followed by a hearing test and a meeting with my doctor. I'm grateful to have health insurance, which means - in the most recent case - I paid $160 coinsurance for the $3,579 MRI, and $50 for the $960 hearing test/doctor's appointment.
The emotional cost, however, is harder to calculate.
When first diagnosed, I immediately went on the Internet and learned that most acoustic neuromas are slow-growing - but others increase rapidly. Anytime I felt dizzy or had trouble hearing, I worried. I joined a support group and met a woman whose surgery to remove an asymptomatic two-millimeter tumour had left her with crippling headaches and facial pain. I logged on to the discussion forum on the Acoustic Neuroma Association's website and read horror stories of botched treatments as well as wonderful examples of excellent results. After several months of almost daily trips to the forum, I became overwhelmed by the anxiety these posts aroused and signed off.
I tried to remain calm over the years as I watched my tumour's creeping growth, at a rate of about one millimetre - the size of a grain of sugar - a year.
Navigating an emotional tightrope between responsible vigilance and anxious obsession, I gratefully clung to the fact that I had no symptoms. My hearing and balance seemed unaffected. My yoga practice proved extremely helpful since a central teaching is finding equilibrium - that steady place between effort and surrender - which is the key to watchful waiting. I found comfort in viewing the experience as an opportunity to cultivate gratitude and faith, and I meditated daily on visualising the dissolving of my tumour.
By 2006, about three years after it was discovered, my tumour had grown to six millimetres - about the size of a pea. At my doctor's urging, I met with a radiation oncologist, who recommended that I undergo radiation treatment intended to halt the growth.
But since I was still asymptomatic and the tumour was still small, I chose to continue watchful waiting. I'd read that some tumours stop growing on their own, and I hoped this would be the case with mine.
In April 2013, based on an article I had written about the accidental discovery of my tumour, I was asked to testify before the Presidential Commission for the Study of Bioethical Issues at a meeting devoted to the ethical implications of incidental findings. Representing the patient's perspective, I told the panel, "As a health journalist I'd always thought there was a great benefit in early detection. However, my experience has made me question the wisdom of learning about an abnormality if all it offers is anxiety - as well as potential harm from treatments for something that might never affect my health."
Yet when a panel member asked me, "Do you really wish that you simply had never been told?" I had to admit, "Definitely no. If [the doctors] know, I want to know. I wouldn't want to be shielded for my own protection. That's my decision; this is my brain." I urged the panel to keep patients informed "in simple, direct language of what's been found and its implications for health" and to "consider adding a support person to the health-care team, such as a social worker or psychologist, to help the patient and their family process the information and decide on a course of action."
Ironically, four months after my testimony, I had my scheduled MRI and hearing tests and learned that my tumour measured 1.2 centimetres - about the size of a small walnut.
While I still had no symptoms, tests of my vestibular function - the sensory system that contributes to balance - on the affected side were abnormal even though I had not experienced balance problems. Continued growth would now mean a strong likelihood of negative effects on my hearing and facial nerves. A common way people learn of an acoustic neuroma is experiencing sudden, one-sided hearing loss, which may be permanent. So perhaps my incidental finding had been a blessing after all. It was time to take action.
I spent six weeks visiting brain surgeons and radiation oncologists, spoke with patients who had chosen each approach. I made the decision to have what is known as gamma knife radiosurgery.
In my decade of waiting, there had been significant advances in this minimally invasive treatment option, which uses imaging to direct gamma radiation very precisely to a target point. The radiation is designed to inactivate further growth of the tumour. In the large majority of cases it is successful, but sometimes the tumour continues to grow, and further treatment is necessary. And there are scary reports of rare instances where benign tumours turned malignant through radiation. Yet weighed against the potential risks of brain surgery - including a likely hearing loss in one ear - the gamma knife seemed right for me.
Continue reading part two of Watch and Wait: The Waiting Game.