Want to know?

What your patient is thinking – this book spills the beans, plus it has discussion sections and research links to better/evidence-based practice: Nothing Personal, disturbing undercurrents in cancer care. Radcliffe Publishing (Taylor & Francis – Routledge); CPD certified. (Winner, Medical Journalists’ Association Open Book Award 2009; RCN’s essay prize 2009.

“Today’s patients continue to raise the same issues, but clinicians are now being encouraged to get in touch with their feelings, so perhaps my story could be useful to patients and professionals alike.”

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Posted in anal cancer, biopsies, books, Breast Cancer, Campaigns, cancer, citizen safety, clinical trials, Compassion in healthcare, complaint, CPD accreditation, death, diagnoses, dying, evidence-based medicine, guidelines, harms, healthcare modernisation, humour, information, informed consent, medicine's flaws, multidisciplinary team meetings (MTDs), nhs staff, openness, palliative care, patient safety, patient/doctor communication, patient/public involvement, personal autonomy, poetry, psychological harm, Public safety, rarer and uncommon cancers, speaking out | Tagged , , , , , , , , , , | Leave a comment

Breast cancer: old news re reduced need for chemotherapy

‘Good News for Women with Breast Cancer: many don’t need chemotherapy’ writes Denise Grady in the New York Times, 3 June 2018 reporting on a major international study.

The gene test, called Oncotype DX Breast Cancer Assay, is the focus of the study.

‘The availability of the gene test in 2004 helped researchers sort out women with very high or very low risk.

“But we really didn’t know what to do with women in the middle,” Dr. Mayer said. “Some seemed to benefit and some didn’t. We were back to square zero, safe rather than sorry, giving chemo to a lot who didn’t need it.”

“We can spare thousands and thousands of women from getting toxic treatment that really wouldn’t benefit them,” said Dr. Ingrid A. Mayer, from Vanderbilt University Medical Center, an author of the study. https://www.nytimes.com/2018/06/03/health/breast-cancer-chemo.html

– However, media cancer hype is usually followed by scientific/commonsense explanations and this ‘good news’ is no exception – see responses to the bmj article ‘Seven in 10 women with early breast cancer do not need chemotherapy, study finds’:

BMJ 2018;361:k2473

https://www.bmj.com/content/361/bmj.k2473/rapid-responses

 

Posted in Breast Cancer, breast screening, cancer drugs, clinical trials, evidence-based medicine, healthcare modernisation, medicine's flaws, overtreatment, patient safety | Tagged , , , | Leave a comment

Breast screening, cervical screening: simple explanations should help citizens and doctors

Cancer screenings and overdiagnosis: pick the outcome that matters.

Excellent article for those who want to understand the real issues around breast screening.

The super clear graphic from the Harding Centre for Risk Literacy shows outcomes for numbers of women aged 50 or older screened or unscreened (worse outcomes for younger women are mentioned later on).  This is something that all women invited to breast screening should be offered if they are to give informed consent!

The principles of a good screening test are examined. Uncomfortable questions such as, “How many women who do not have cancer deserve to be harmed in order to diagnose or prevent one case of cancer in another woman?” are followed by simple explanations and there are many useful links, including ‘Why Cancer Screening Has Never Been Shown to Save Lives’ (BMJ).

“We have to consider all outcomes, not just the one we are interested in. This is why we no longer recommend PSA screening for prostate cancer, chest x-rays for lung cancer screening, urine screening for neuroblastoma, etc. We were doing more harm than good.”

The article also looks at cervical screening.

Cancer screenings and overdiagnosis: pick the outcome that matters. Howard Herrell MD. Published on 9 February 2016.

http://www.howardisms.com/obgyn/cancer-screenings/

Posted in bad science, Breast Cancer, breast screening, Campaigns, cancer, citizen safety, clinical trials, Compassion in healthcare, diagnoses, evidence-based medicine, harms, healthcare modernisation, information, informed consent, mastectomy, medicine's flaws, openness, Over-medicalisation, overdiagnosis, overtreatment, patient safety, patient/doctor communication, personal autonomy, Public safety, Screening, Screening Mammography, speaking out, Womb cancer and hysterectomy | Tagged , , , , , | Leave a comment

Driving licence renewal delays

Does anyone have experience of driving licence withdrawal (following fall/spectacular head trauma) and delayed return please? Being wheel-less is like being in prison. No seizure, no stroke, no brain cancer – ‘Apply after 3 months’ advised consultant. No chance. Protocol calls for 6 months’ ban. Buy groceries online…but can’t trawl shops for birthday bargains. Become dab hand at hacking hair with nail scissors….Eight weeks before end date, as advised, obtain copies of all medical data & send with DVLA renewal forms. Haunt front door mat each day around postie times. Two jaw-grinding weeks past 6 month date I ring DVLA only to learn that licence return now depends on manager’s workload/quantity = unknown. Hmm…Prison inmates get timely release, don’t they?#donemytime, #kafka

Posted in drama, psychological harm, Uncategorized | Tagged , , | Leave a comment

Breast screening trial: information and consent

‘Misleading’ invitations left patients feeing manipulated’ (Ben Rumsby and Deborah Cohen, The Sunday Telegraph, p 10, 27 May 2018).

How many women who accepted an invitation to breast screening when aged over 70 or under 50 were personally affected by the article ‘Women ‘duped’ into needless trial breast screenings’ in The Sunday Telegraph last Sunday, 27 May 2018?

If the original information sheet clearly stated that acceptance meant taking part in a clinical trial, why were so many changes required of it – so many times?

How many women have been entered into a clinical trial without realising it? The Age-X breast screening Trial has no consent process, as is usual when human beings are used in ‘experimental healthcare’.

For more information follow Susan Bewley on Twitter and Facebook.

Take a look at the HealthWatch-UK website (‘an independent charity for science and integrity in healthcare’, not the later NHS organisation) https://www.healthwatch-uk.org/

(See also: https://www.healthwatch-uk.org/news/150-times-letter-sparks-media-frenzy-screening.html )

Posted in Breast Cancer, breast screening, Campaigns, cancer, citizen safety, clinical trials, Compassion in healthcare, harms, healthcare modernisation, information, informed consent, mastectomy, medicine's flaws, Over-medicalisation, overdiagnosis, overtreatment, patient safety, patient/doctor communication, personal autonomy, Public safety, Screening Mammography | Tagged , , , , , , , | Leave a comment

Breast screening – an enviable review

Writing in JAMA Internal Medicine (Reform of the National Screening Mammography Program in France, February 2018 Volume 178, Number 2) Alexandra Barratt, Karsten Juhl Jorgensen and Philippe Autier discuss reform of the National Screening mammography Programme in France. (Published Online: October 30, 2017, doi:10.1001/jamainternmed.2017.5836.)

In 2016 the French Ministry of Health released a report on the independent inquiry into their breast screening programme which had been brought about by doubts about the programme’s effectiveness and other concerns. Barratt and colleagues describe how this inquiry differed from that of the UK (Marmot Report); briefly, in France there were two major consultations: a civil consultation and another consisting of health professionals (but without links to breast screening). Each group addressed four specific questions. The ‘unexpectedly intense scientific controversy’ which emerged drew attention to the fact that, despite ‘extensive discussion in the scientific literature’, concerns such as uncertainty about benefits and risks of overdiagnosis and overtreatment had not been acknowledge by the screening programme. The steering committee found limited evidence on the outcomes of screening based on older trials; they highlighted that ‘…breast screening contravenes a fundamental principle of screening, namely that the natural history, including development from latent stage to declared disease, should be adequately understood’.

Importantly, Barratt and colleagues look at what might account for the differences between the French Review and other breast screening reviews (such as the UK Marmot Review) – including conflicts of interest – and those reviews’ recommendations.

They point out that ‘ meaningful information sharing and discussion between citizens of diverse backgrounds’ is enabled by ‘in-depth community deliberations such as the French inquiry’ and suggest, ‘Such a deliberative process offers advantages for policy development with implications for other countries that go beyond breast cancer screening.’

It is surely a process that the UK would do well to copy? UK women invited for breast screening deserve to know the full truth and at the moment this is not being offered. Screening is being based on fear and years of false information. Most women whose opinion I ask about breast screening are only aware of the radiation risk – yet according to the science, they are three times more likely to be harmed than to benefit – if at all.

Those women who receive ‘invitations’ as part of the extended screening age (AgeX Trial) are in an even worse position, for how many of them realise they are being coerced into a clinical trial – a randomised controlled trial – and according the Cancer Czar ‘The Largest RCT in the world’?

 

doi:10.1001/jamainternmed.2017.5836

Posted in Breast Cancer, breast screening, Campaigns, cancer, citizen safety, clinical trials, Compassion in healthcare, diagnoses, harms, healthcare modernisation, information, informed consent, mastectomy, medicine's flaws, Over-medicalisation, overdiagnosis, overtreatment, patient/doctor communication, personal autonomy, Public safety, Screening, Screening Mammography, speaking out | Tagged , , , , , | 2 Comments

Breast screening/psa: harms or benefits

Article from 9 October 2011, but relevant today re breast screening, the AgeX trial and the computer ‘glitch’:

‘Do I have cancer?’ an article in the New York Times by Shannon Brownlee and Jeanne Lenzer. –

‘…Mohler says, ”P.S.A., when used intelligently to detect prostate cancer early in men after proper education . . . performs pretty well; it actually performs better than a mammogram.” P.S.A. advocates are concerned that statistics play down the value of each life saved. Some also argue that the statistics will validate their view as men are followed beyond 14 years. More important, they worry that if men reject screening, malignant cancers will go undiagnosed.

David Newman, a director of clinical research at Mount Sinai School of Medicine in Manhattan, looks at it differently and offers a metaphor to illustrate the conundrum posed by P.S.A. screening.

”Imagine you are one of 100 men in a room,” he says. ”Seventeen of you will be diagnosed with prostate cancer, and three are destined to die from it. But nobody knows which ones.” Now imagine there is a man wearing a white coat on the other side of the door. In his hand are 17 pills, one of which will save the life of one of the men with prostate cancer. ”You’d probably want to invite him into the room to deliver the pill, wouldn’t you?” Newman says.

Statistics for the effects of P.S.A. testing are often represented this way — only in terms of possible benefit. But Newman says that to completely convey the P.S.A. screening story, you have to extend the metaphor. After handing out the pills, the man in the white coat randomly shoots one of the 17 men dead. Then he shoots 10 more in the groin, leaving them impotent or incontinent.

Newman pauses. ”Now would you open that door?” He argues that the only way to measure any screening test or treatment accurately is to examine overall mortality. That means researchers must look not just at the number of deaths from the disease but also at the number of deaths caused by treatment…’

But the information drummed into women year on year is that ‘breast screening saves lives’ – 100s of them! 1000s of them! Sadly, not true. And the programme was started with good intentions. However, the harms have far outweighed the very few benefits. Take a look at the Harding Center for Risk Literacy & search ‘Gerd Gigerenzer’ –

Time for doctors and the public to rip off the Emperor’s New Clothes?

https://archive.nytimes.com/query.nytimes.com/gst/fullpage-9C03E1D61031F93AA35753C1A9679D8B63.html

Posted in Breast Cancer, breast screening, Campaigns, cancer, citizen safety, clinical trials, Compassion in healthcare, harms, informed consent, mastectomy, medicine's flaws, Over-medicalisation, overdiagnosis, overtreatment, patient/doctor communication, personal autonomy, prostate cancer, Public safety, Screening, Screening Mammography, screening prostate cancer, speaking out | Leave a comment