Misdiagnosis: a situation when you are diagnosed with an illness or condition that is incorrect. Not to be confused with a missed diagnosisthe process of identifying a disease based on signs and symptoms, patient history and medical test results.
Sometimes a misdiagnosis might not matter, the medical issue will run its course, may heal, and the fact that it was a misdiagnosis is not going to cause any consequences.
However, in the case of a serious diagnosis such as cancera disease where abnormal cells split without control and spread to other nearby body tissue and/or organs, this can delay urgent treatment, and in some cases, a misdiagnosis could be seriously debilitating or life-threatening. The most commonly misdiagnosed cancers in Australia and the UK are lymphomas, leukaemias, breast cancer, sarcomas, melanomas and prostatea walnut-shaped gland in the male reproductive system that is responsible for producing semen - a bodily fluid that acts as a vessel for sperm transport during ejaculation cancers.
Discovering that you have cancer can already be overwhelming and shocking, but to hear that you’ve been misdiagnosed, that the cancer is not what you originally thought, can be worse. Like a bad dream on repeat.
We would expect that doctors and healthcare professionals should be able to quickly and accurately diagnose cancer, but it isn’t always the case. We all know the proverb “When you hear hoof beats in the hallway, think horses, not zebras.” It means that we should use common sense and look for the expected cause first, rather than searching out something more exotic. But where does that leave rare cancers?
We are only too aware that a prognosisto predict how a disease/condition may progress and what the outcome might be can depend on how quickly your treatment is commenced. In other words, the quicker you can get the cancer diagnosis, the better your options for treatment are. Rare cancer diagnoses are often missed, delayed or inaccurate, and it’s a situation in which it’s difficult to not place blame or seek retribution. It can be a serious mistake.
“What is a rare cancer…?” one doctor was recently overheard asking a colleague. “Those ones you don’t know what to do with…” was the reply.
There are many clinicians, researchers, patient groups and advocacy bodies working hard to raise awareness of signs, symptoms, screeningtesting for cancer or conditions that can lead to cancer before symptoms appear, also known as cancer screening protocols, best practice and optimal pathways of rare and less common cancers. There is much work to be done.
What if it happens to you?
If you or your doctor are unsure about the type or extent of your cancer, or you think the doctor is underestimating its severity; if your cancer is rare, or you think other treatments may be available, you need to seek out a second opinionwhen a patient seeks another evaluation from a different doctor. Our patient support team can help you with the questions you should ask to get the information you need. It is important you get all the information you need to make decisions and feel like you are in the best hands.
A cancer diagnosis can be a frightening event, and a misdiagnosis even moreso. A person with a misdiagnosis may benefit from counselling and might feel angry or upset. Please talk to your healthcare team about your concerns, consider getting a second opinion, and pick up the phone to us at Rare Cancers Australia to discuss your options. We can help guide and direct you in this confusing, frightening time. We understand things might not be straightforward with a rare cancer, but you are not alone.
Authored by Dr Emily Isham