The question: About 15 months ago, I had surgery to remove my left ovary due to an eight-centimetre "mass." The pathology report said it was a "borderline" tumour and further investigation of my peritoneal cavity wasnecessary for staging purposes. My surgeon [who had misdiagnosed it as a benign cyst]said that wasn't necessary and discharged me. I asked my general practitioner for a second opinion and am still waiting to be called for an appointment with another gynecologist, almost a year later. Is there anything I can do?
The answer: As a patient, I can't recommend strongly enough the importance of being referred to a cancer hospital or teaching hospital with a cancer centre in it.
It may seem strange for me to suggest you go to a cancer centre when you don't have cancer, but clinicians there are best placed to remove your tumour, look at it under a microscope, and do the proper follow-up.
What concerns me most is that you appear to have fallen through the health-care cracks. The surgeon has decided your tumour is a closed case, which, in turn, seems to have coloured your family doctor's approach. Why else would you have been asked to wait a year without receiving so much as a call from another gynecologist?
I also wonder how much experience your surgeon has with these tumours. A surgeon who has seen a good number of them knows a small percentage return and another small percentage are misdiagnosed as borderline when, in fact, they are an invasive cancer.
According to Marcus Bernardini, a gynecologic oncologist at Princess Margaret Hospital [PMH]in Toronto, the recurrence pattern of these tumours is unpredictable; less than 10 per cent recur, coming back in some cases years later.
Dr. Bernardini said you are right to seek follow-up and suggested two things: Ensure a gynecologic pathologist has examined your tissue, and meet with a gynecologic oncologist to discuss whether another procedure is required.
"Essentially, you want to discuss the pros and cons of going back in and doing another operation," he said in an interview. "Up to 10 per cent of these tumours may be outside the uterus at the time of diagnosis. It's been over a year. One could argue that well, at this point, we might just observe. But that's a discussion."
At PMH, for example, Dr. Bernardini says every effort is made to see new cases within two to three weeks of referral from a doctor.
What concerns me most is the absence of planning. You need someone to be on your file to follow your care.
I suggest you book an appointment with your family doctor. Ask for a referral to a gynecologic oncologist at a cancer or teaching hospital in your city.
Do not leave that appointment until you have a plan for a referral and follow-up. You have been forced to wait far too long already.
The Patient Navigator is a column that answers reader questions on how to navigate our health-care system. Send your questions to patient@globeandmail.com.