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The word cancer conveys a high-risk, devastating disease. Words like early, pre or indolent convey low-risk disease. As a long-term cancer survivor, In my opinion anyway, it comes down to the patient’s decision-making. If you are told you have a cancer, any cancer, your decision-making will be more aggressive than if you are told you have something that may never harm you. Words like “indolent.” “pre or “in-situ” disease are not only more accurate, they are less frightening. I’m not encouraging undertreatment. I’m simply saying that the patient should be given accurate information to base his or her treatment decisions on.
Two of the most common cancers illustrate my point. According to studies “An estimated 85% of early prostate cancers are thought to be so slow-growing they wouldn’t cause harm in a patient’s lifetime, but about 90% of these men opt to treat them aggressively—despite the risk of side effects such as incontinence and impotence.” A man who’s prostate cancer might not have harmed him in any way treats his early prostate cancer aggressively and spends the rest of his life wearing a diaper.
For breast cancer “studies suggest that as many as 30% of the breast cancers discovered via mammograms in recent years may have been treated unnecessarily.” A lumpectomy, low-dose tamoxifen and lifestyle therapies may offer the right balance of risk reduction and adverse events that some women want. Yet if they are told that they have breast cancer, they might opt for aggressive treatment and a lifetime of pain.
I am a long-term survivor of an “incurable” cancer called multiple myeloma. I have been researching and working with newly diagnosed cancer patients, of all types at all stages, since 2004. My belief is that newly diagnosed cancer patients need to be educated. Low-risk cancers must be referred to as such.
To learn more about DCIS and the evidence-based therapies that can help you prevent its spread into invasive breast cancer, please watch the video below:
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Have you been diagnosed with DCIS, colon polyps, Barrett’s Esophagus, or another form of low-risk disease and you have questions about your prognosis or your therapy plan? Scroll down the page, post a question or comment and I will reply to you ASAP.
The clinical definition of cancer describes a disease that, if untreated, will grow relentlessly and spread to other organs, killing the host…
Yet what we routinely refer to as cancer today is a disease ranging from ultra low (less than a 5% chance of progression over two decades) to extremely high (more than a 75% chance of progression over one to two years).
Modern screening programmes have led to increased detection and treatment of ultra low risk cancers, including many thyroid, prostate, and breast cancers, she writes.
For example, as many as 35% of all screen detected breast cancers may fall into the ultra low risk category. Yet women with low risk lesions (known as ductal carcinoma in situ or DCIS) “are being rushed to the operating room, precipitating a lifetime of anxiety,” says Esserman.
Investigation and invasive intervention themselves carry risk. Rather than surgery, she believes we should offer active surveillance, but says “it is difficult to encourage patients to wait and watch once they have been told they have cancer.”
Overtreating people who are not at risk of death “does not improve the lives of those at highest risk,” she writes. “The refinement of the nomenclature for cancer is one of the most important steps we can take to improve the outcomes and quality of life of patients with cancer.”
But Dr Murali Varma at the University Hospital of Wales in Cardiff warns that creating new entities risks confusion, so public education about the nature of cancer must be the priority.
In practice, it is impossible to determine the natural course of any low risk tumour, he says, “because excision for definitive diagnosis alters its natural course, precluding knowledge of how the tumour would have behaved if left untreated.”
This uncertainty could also lead to underestimation of the frequency of overdiagnosis as some “cured cancers” would not have progressed even if untreated, he adds.
Varma believes that, rather than focusing on semantics, the key is to educate everyone from the healthy public to health professionals about the meaning of a diagnosis of cancer.
New terminology often leads to confusion, so an alternative approach would be to recalibrate thresholds for the diagnosis of cancer, so that some very low risk cancers are categorised as benign, he suggests.
“If the public were educated that benign signifies very low risk rather than no risk at all, then anxiety inducing labels could be avoided,” he concludes.
In a linked patient commentary, Birte Twisselmann, an editor at The BMJ, describes the “considerable worry” of having two suspicious lesions dealt with in less than a year. Despite their low risk, she says the “confusing terminology for cancers and precancerous lesions made me anxious.”
Even the discharge letter “was another trigger for anxiety,” she adds. The phrasing is not a label like cancer, but “it felt as if it had a hidden meaning not intended for the patient to understand.”
Materials provided by BMJ. Note: Content may be edited for style and length.