When is a cancer not a cancer?

Time for a re-think on screening.

For the past four years, along with many others, I have been involved in campaigning to raise awareness around breast screening issues: the lack of benefits, considerable harms and the poor quality of information given to women invited to participate in the NHS breast screening programme. Women have not been told the risks they face by consenting to screening. Bizarrely, despite all the evidence of harms, an Age Extension Randomised Controlled Trial was begun even before a UK Independent Review had reported its findings. Over time, as more and more research has confirmed the need for acknowledgement of these issues and calls for change have increased, I have posted some of the information on this blog.

Naturally, it has not been easy for women to accept that they may have been treated for breast cancer unnecessarily. At a joint workshop I ran there were some heated exchanges and emotions ran high. Many felt betrayed that the information they received before screening had been less than adequate – or worse. Some women just could not accept the research findings. After all, national breast cancer charities had only recently mustered them to lobby MPs to extend the screening age at both ends. But some national charities were also unable to accept what the research was showing. They had been championing breast screening for years and it was difficult for them to do an about turn.

Now, a working group set up by the National Cancer Institute to look into the problems of overdiagnosis and overtreatment, has reported its findings. Writing in the bmj 2nd August, ‘Don’t call low-risk lesions cancer, experts say’, Michael McCarthy reports on the findings of Laura Esserman and colleagues, as outlined in JAMA, which give an overview of the current position and suggest what needs to be done.

http://www.bmj.com/content/347/bmj.f4909?etoc=

Don’t call low risk lesions cancer, experts say. BMJ 2013; 347 doi: http://dx.doi.org/10.1136/bmj.f4909 (Published 2 August 2013)

Cite this as: BMJ 2013;347:f4909

They conclude (as campaigners have long been pointing out): not all ‘cancers’ progress to metastases and death and some cause no problem if left alone; that a better understanding of the biology of cancer is needed; improved molecular diagnostics capable of distinguishing between potentially aggressive and non- aggressive cancers are needed in order to design better screening programmes.

Their five recommendations are:
1 For doctors, patients and the public to recognise that overdiagnosis is common.
2 That the term ‘cancer’ only be used to describe lesions with ‘reasonable likelihood of lethal progression’ (which would mean DCIS, ductal carcinoma in situ, would no longer be classed as a cancer, neither would high grade prostatic intraepithelial neoplasia. These should be reclassified as IDLE – indolent lesions of epithelial origin. (Currently, these are classed and treated as cancer, hence the overdiagnosis and overtreatment.)
3 For observational registries to be set up to improve understanding of lesions thought to have low malignant potential.
4 Strategies to reduce the detection of indolent disease, such as frequency of screening, focusing screening on high risk populations, or raising the thresholds for recall and biopsy.
5 Research to develop ways to slow or halt progression of pre-cancerous and cancerous lesions as an alternative to surgical excision.

They call for ‘physicians and patients to engage in open discussion about these complex issues and for the media to better understand and communicate the message so that as a community the approach to screening can be improved’.

It is to be hoped that this sensible document is acted upon.

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About bmitzi

Medical writer, author, artist. Cancer campaigner. Aiming always to improve health services and bring compassion into health care.
This entry was posted in Breast Cancer, Campaigns, clinical trials, Compassion in healthcare, patient safety, Screening, Screening Mammography and tagged , , , , , , , , , , . Bookmark the permalink.

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