Ten years ago a desperate young woman walked into my office and declared: “I need your help. I am dying of cancer.”
Her story was incredible. At an integrative medicine seminar she had won a special blood test as a door prize. Thinking of having some bloods done anyway, she had taken advantage of the free offer, only to receive a call telling her she had cancer. It was only after an expensive course of intravenous vitamins that her sceptical cousin asked why no one had at least ordered a CT scan to find the cancer. She convinced her GP to order the scan, which detected two tiny lung nodules. The GP sent her to a surgeon who ordered a different scan, by which time the benign nodules had disappeared. The surgeon told her she did not have cancer but she did not believe him. Then she saw me.
“I have cancer; your job is to find it.”
After months of costly private consultations, her unfulfilled need was both concerning and poignant. She was a new mother who didn’t want to die. After all, wasn’t early detection of cancer the holy grail? I realised that while the easiest thing was to dismiss her as anxious, the right thing was to help her see what had happened.
Flabbergasted, I received the patient’s consent to pen a cautionary essay in the New England Journal of Medicine. The editors must have been equally dumbfounded because, in all my years of writing, it was the only time I was required to attest that the story was true. I replied that not even the most feverish imagination could have conjured it – who gives out a blood test as a door prize?
The patient had received a test founded on a clever principle – although at the time many clinicians had barely heard of circulating tumour cells, which are microscopic fragments of cancer shed into the bloodstream. The appealing theory is that a simple blood test for such cells can detect asymptomatic cancer or, in the case of operable disease, define recurrence risk and hence stratify the need for chemotherapy.
There is good cause for optimism but researchers caution that the measurement of circulating tumour cells remains an experimental tool. There is sufficient ambiguity that laborious and randomised studies will be required to establish the test’s analytical validity and, crucially, clinical relevance. In other words, being able to measure something is not the same thing as it being useful, and a new test isn’t necessarily better than the old.
Doctors know from experience that even those who struggle to buy food will somehow cobble together the money if told it might help their cancer. The latest news of circulating tumour cells having resurfaced and being promoted as a validated test has oncologists dismayed over yet another unapproved offer dangled in front of patients in the guise of hope.
Hapless patients are expected to pay to have an unproven test and receive controversial advice, which they are subsequently asked to check with their oncologist. This is meant to send a reassuring signal of “we are all in this together”. Cancer patients need all the collaboration they can get but, make no mistake, this isn’t one of them.
Chemotherapy is a blunt and toxic instrument that should be used more sparingly, but certain therapies do prolong quality and extent of life; for an oncologist to have an informed discussion about avoiding chemotherapy is one thing but to be nudged to do so using an unvalidated, unproven test raises serious ethical concerns to me. Our patients deserve better.
One might reasonably suggest that just because a test has been performed doesn’t compel the oncologist to use it. But this isn’t how patients think. Imagine “investing” your savings and hope into a test and then being told to disregard the result. Or spending thousands of dollars on vitamin infusions, an alternative medicine staple, only to find out that, far from flushing out any cancer, it was the vitamins that got flushed away.
Armed with spurious results, my young patient refused to believe she was not terminally ill. Suddenly, the onus was on me to prove that she did not have cancer. And the responsibility mine to coax her into enjoying her child rather than being ruled by the fear of dying. After spending as much time as I could, I had to tell her that there simply wasn’t room in my cancer clinic to see patients without cancer. She gracefully conceded and I never heard from her again, but I still remember her terror-stricken face.
So long as there is a market, oils, potions and other “promising” but unproven therapies will survive. Something we can do in response is reduce healthcare fragmentation so that all the advice cancer patients need is found in one place. We are getting better at treatments but are still lagging in whole-patient care. Patients know their chemotherapy schedule by heart but puzzle over what to eat and how much to exercise. They don’t know to whom to reveal their anxieties or whether asking probing questions is tantamount to disloyalty. When they walk out of the doctor’s office, they need someone else. Where that “someone else” is a cancer care nurse, the patient experience changes, but such nurses are still relatively rare.
When I think back to the many patients who travelled the route of questionable therapies, many did so because, above all, the alternative provider listened and exuded a higher “care factor”. But the eventual cost to the healthcare system was unforgivably high.
There is nothing more scandalous to professionals than the journey of a cancer patient made unnecessarily more difficult. If we want to keep protecting vulnerable cancer patients from unproven and even bogus therapies, we will need strong and agile regulatory oversight. At an individual level, we can’t get past better communication.
When someone is diagnosed with cancer, there is an endless stream of people raring to give advice. From the neighbour’s second cousin to the natural healer, everyone wants in, and overwhelmed patients understandably listen to those who sound most convincing. The real job of medicine, then, is to redouble its efforts to win the trust of patients who will prefer to listen to their doctors and nurses instead of those who appear to promise the world and deliver very little.