Doctors as patients: case study - cancer
Dr Sarah Burnett tells of being both doctor and patient - a personal reflection on her experience of breast cancer, with a message that can apply to other doctors whatever the disease, as outlined by a response below from psychosocial oncology researcher Professor Lesley Fallowfield.
It was a fairly quiet afternoon in the X-ray department, so I took the opportunity to have my annual mammogram. I had been screened from the age of 38, as my mother had a perimenopausal breast cancer. The previous year, in October 2004, I had undergone stereotactic biopsies for changing microcalcification. The histology was benign, so when my digital mammogram popped up on the screen now, I was shocked. I turned to the radiographer and - prefixed with language I won't repeat here - said, 'That wasn't there last year.' I went back to the main department, and wasn't surprised to be told that the breast radiologist wanted me back upstairs for an ultrasound. My right breast had always looked like an accident waiting to happen, and now it had.
I went back up, 'I'm only on the meter till half four.' The response was, 'Don't worry, we'll get someone to feed it.' By now I had figured out this much: I had breast cancer, but to me the lesion looked quite small. I was scanned by the man who had taught me all the breast imaging I knew. He went very quiet, so I asked him what was up; by way of a response he simply turned the screen towards me. There were at least three tumours on that image alone. That's when I cracked.
As a doctor I knew that I would have to have a mastectomy, and chemotherapy, so I was denied the opportunity to assimilate each piece of information before moving onto the next. However, there may be a school of thought that says if you're going to have bad news, you might as well have it in one downpour, rather than a recurrent toxic drip.
Since the diagnosis I have often been asked whether it was better or worse for me, being a doctor. I think the simple answer is both. I was well aware of the potential complications of surgery and chemotherapy, I had a pretty clear idea of what could go wrong. But worse than that was the inevitable blurring of the doctor/patient boundaries.
The day after the diagnosis I went to do a list, full of old blokes' complaints of having to get up to pee at night, and telling me, 'You don't know how awful it is.' So much of me wanted to batter them with the ultrasound probe, shouting, 'You have no idea what I'm going through,' that I decided it was safer not to see any patients prior to the surgery. Safer for the patients, that is.
The rest of the week was filled with tests, needles, biopsies and yet more needles. I am terrified of needles, unless I'm on the plunger end. Many staff I encountered during my treatment seemed to find this hard to believe at best, and risible at worst.
Doctors make lousy patients at the best of times. We think we know it all, even when we're miles out of our specialty area, and colleagues collude in this by not treating you like any other patient.
A year after the original surgery, I needed bilateral prosthetic revision. In my wisdom I decided not to spend the night in hospital afterwards. I insisted that I didn't need drains. I'd walked down to theatre at 3pm, and by 8pm I was home. The wound oozed so much the Steri-Strips fell off within two days. Ten days later I was readmitted with a periprosthetic collection and septicaemia. Doctors are very bad at giving ourselves the time and space that we need to recover.
Amazing patient response
On the positive side, at least I'm not frightened of hospital smells, anaesthetics, jargon, or any of the myriad tiny fears that confront a lay patient. I was able to source the best care, and to make highly informed decisions. I worked throughout my chemotherapy, and the response from my patients was amazing. Alerted by my bald head, they were supportive and empathetic, many relieved to see that doctors are not immune to disease. We swapped tips on dealing with hair loss, and the dreadful early chemical menopause. I learnt a lot.
My tip to any doctors who find they are diagnosed with a life-threatening illness, would be this: leave the medical degree at home, metaphorically speaking. And my experience tells me that it can be important not just to listen to the advice that your specialist is giving you, but to take it. Above all remember: it's okay to be scared, and it's okay to feel exhausted, and it's okay to take painkillers. Contrary to what we would have people believe, under the white coat, we're human.
Dr Burnett is a consultant radiologist at the Princess Grace Hospital in London.
Response from Professor Lesley Fallowfield, director of Cancer Research UK's psychosocial oncology research group at Brighton and Sussex Medical School:
Dr Sarah Burnett's moving account of being on the receiving end of breast cancer treatment is fairly typical of healthcare professionals being almost surprised by their experiences and emotional reactions when they become patients themselves. Several issues she raises are worth exploring in more detail:
1. Having knowledge about the disease, even if it is not in the doctor's own area of expertise, means they are denied an appropriate amount of time in which to adjust emotionally to the shock of the diagnosis and then to assimilate the information regarding therapeutic options.
2. Sometimes the communication with the professionals treating a colleague is actually rather poor as they make assumptions that you already know everything about the disease, and do not wish to patronise you as a doctor. New mothers who are doctors or nurses often find that the staff in maternity units assume that by virtue of your medical or nursing status, you do not need advice, or a demonstration of bathing, nappy-changing or feeding.
3. Often, the dialogue between a doctor and sick colleague starts to sound like a meeting between two experts objectively discussing a case, with few opportunities for empathy or emotional disclosure. This denies the sick person the support they probably need.
4. If one is sick and needy oneself, it is questionable whether one has the physical and emotional energy to invest in other patients, and although many people find comfort in continuing to work as normal, Dr Burnett recognised that she should not do so, at least before her surgery.
5. There is also a tendency for sick doctors to feel that they have to be so much better at coping than fellow non-medical mortals. When I had bilateral knee replacements, I left hospital at the earliest opportunity, continued to work at home, even holding meetings there instead of investing appropriate time on recovery, physiotherapy and so forth. I fell into the same trap as Sarah, and her desire to go home too early without drains led to the predictable consequences of septicaemia and readmission.
6. Most personal accounts of healthcare professionals being on the receiving end seem to include a sense of surprise that some aspects of their disease, its treatment, the support or lack of it - the whole medical journey, in fact - turns out to be so different, and often so much worse than they had ever imagined. Some even claim that it makes them better doctors as a result.
Sarah ends her article with some wise advice that if a doctor is unfortunate enough to become ill then it is okay to become a real patient. Doctors bleed, hurt and get scared just like anyone else. Sometimes, doctor simply doesn't know best, especially when sick themselves. Maybe also all of us need to be wary of treating our colleagues as superhuman.
Professor Lesley Fallowfield BSc DPhil, Cancer Research UK Psychosocial Oncology Group