We’ve all been told about the importance of getting a second opinion (or even a third). I’ve never felt I needed to before but now I will. Thanks to an unlikely chain of events, my cancer was eventually detected but not before some mistakes were made along the way.
When I first spoke with my GP about my symptoms, she immediately sent me for a few tests.
First, I was sent to an Ear, Nose and Throat specialist in a local hospital who used a scope to look down my throat. His findings? Negative for cancer. Nothing wrong. Nada.
Next I was sent for an X-ray on my throat. It only revealed arthritis in the cervical spine. They thought that perhaps the knobs of arthritic bone were the cause of my difficulty in swallowing. To be fair, I’ve been told that X-rays don’t pick up soft tissue, so I’m guessing that they wouldn’t likely have found cancer anyways.
I was then sent for a gastroscopy. The doctor performing the procedure didn’t see the tumour, so my throat cancer remained undetected. She did, however, make the pronouncement that my esophagus “looked like a dog’s breakfast”. Isn’t that a fine thing to hear from a professional upon awakening from anaesthesia? She then proceeded to line up a Thoracic Surgeon to remove my entire esophagus without anyone discussing treatment options with me. I didn’t feel comfortable with this at all.
If we’re keeping track, that’s 3 different tests so far that failed to detect the cancer in my larynx.
The endoscopic surgeon then referred me to a Gastroenterology Specialist. She was going on maternity leave and needed someone to take over my case. She implored him in a letter to urgently see me because my esophagus was in a very bad way. It was only because my esophagus seemed to be in such a bad state that I got an appointment only one week later: most people would wait a year to be seen by this Specialist.
The Specialist told me that I didn’t fit the demographic for esophageal cancer. Apparently if I’d been a 300 pound man of a different ethnic background, a heavy smoker, and a nonstop drinker of very strong coffee then my diagnosis would have been believable. Good thing I was a small-framed woman who never smoked a day in my life and didn’t like coffee. Clearly I didn’t fit the bill so he felt it was necessary to do a follow-up gastroscopy.
In surgery the Specialist smiled and joked and reassured me that this would soon be cleared up, and he was positive that everything would turn out fine. He told me he’d discovered that the previous biopsy samples taken from the first gastroscopy were given to a lab technician who specializes in uterine cell biopsies, and clearly my esophageal samples didn’t match anything he was used to seeing, hence the diagnosis. He would do another biopsy during the procedure, and then I was asleep.
Unfortunately, he did find a tumour located at the base of my throat where it meets the esophagus, and it was close to the voice box. A biopsy of the tumour itself confirmed it was cancer, inoperable due to it’s location. The esophagus itself was perfectly healthy. I later found out that my cancer was in fact operable, although it would require removal of my voice box.
The Specialist surmised that the reason my esophagus had looked appalling in the first gastroscopy was probably due to the endoscope bumping into the actual tumour on its way down, which likely caused it to bleed into the esophagus.
Funny story: I hadn’t been told not to eat red jello prior to my procedure, and so I did (much better than green in my opinion). I often wonder if that’s what really caused the red streaks in my esophagus which resulted in my urgent referral to a specialist, who subsequently found the actual tumour.
If I’d been comfortable with the initial diagnosis of esophageal cancer, or if the first endoscopic surgeon hadn’t been going on maternity leave, then my perfectly healthy esophagus might have been removed. There’s also the big question of whether or not they would have found the actual tumour during that procedure.
Bottom line: my cancer was missed by 2 negative tests, one misdiagnosed gastroscopy, and one incorrectly performed lab test. Maybe red jello and the fact that I didn’t fit the demographic that were the real heroes that resulted in the true cancer diagnosis.
Don’t be afraid to get second or third opinions!
Next: The run-around!