Some doctors are choosing to ignore the latest research findings on breast cancer screening. Despite evidence that demonstrates how breast cancer screening may be doing more harm than good, women are still faced with ‘pink’ messaging and propaganda that promotes screening and ignores or downplays the harms.
When new medical research was published in the past, only physicians and academics had easy access to the findings. The public wouldn’t hear about the new research until much later, if at all. The Internet has changed that, and these days many women may be more aware of the latest research than their doctors appear to be. When a new research study is published we can find ways to access the information, and sometimes the new research findings are splashed all over mainstream media.
For example, CTV news reported a study in 2012 which found that mammograms lead to overdiagnosis but have little impact on deaths. More recently, a New York Times article presented a vast Canadian study which found that breast cancer death rates were the same in women who had undergone mammography and those who had not.
The media’s offerings of research findings and the ease of access to information via the Internet makes it all the more baffling when some doctors continue to practice without acknowledging the latest research evidence.
Fortunately, more women are doing their own research and are making their own informed decisions about screening. However, because there is a great deal of propaganda and/or misinformation on the Internet, it can often be difficult to know what information is credible, and what information is not.
What follows is a compilation of the most well-researched information regarding breast cancer screening (Special thank you to Elizabeth of Australia and other contributors to this blog for providing the references, inspiration, and information for this post):
- Mammography leaflet written by Peter Gotzsche, et al. The leaflet presents information about both the potential benefits and harms of screening, based on the best scientific evidence available (i.e. randomized trials of breast cancer screening). Excerpt from the leaflet: Screening produces patients with breast cancer from among healthy women who would never have developed symptoms of breast cancer. Treatment of these healthy women increases their risk of dying, e.g. from heart disease and cancer. It therefore no longer seems beneficial to attend for breast cancer screening. http://www.cochrane.dk/screening/mammography-leaflet.pdf Peter Gotzsche is a professor, chief physician, and director of the Nordic Cochrane Center, Rigshospitalet, Copenhagen, Denmark.
- The Nordic Cochrane Center summary on breast cancer screening: http://www.cochrane.dk/screening/index-en.htm
A speech by Peter Gotzsche titled “Time to Stop Mammography Screening” presented at the Evidence Live conference in Oxford in 2013:
- Article in the New England Journal of Medicine titled Effect of Three Decades of Screening Mammography on Breast Cancer Incidence by Archie Bleyer, M.D., and H. Gilbert Welch, M.D., M.P.H.: http://www.nejm.org/doi/full/10.1056/NEJMoa1206809
- Research article in BMJ titled Twenty five year follow-up for breast cancer incidence and mortality of the Canadian National Breast Screening Study: randomised screening trial: http://www.bmj.com/content/348/bmj.g366
Video by Professor Michael Baum titled Breast Screening: Some inconvenient truths
To conclude, a trailer from the film titled The Promise: truth about the breast screening program
forwomenseyesonly 
https://www.telegraph.co.uk/women/womens-health/9654568/Screening-for-breast-cancer-caused-me-a-year-of-hell.html
I haven’t seen this one before. No evidence at all that women under 50 have their lives saved by mammograms but the NHS is steamrolling it’s way ahead with this extension project to screen women at 47 in some parts of the UK. This woman seems to have ended up another martyr to our glorious screening programmes.
“I asked my surgeon at the London hospital what he thought. He answered that in my case we could not go back in time but that screening helped save lives”.
What do they actually count as a life saved? They throw around large numbers but given lobular carcinoma and DCIS usually go nowhere, can we include these discoveries and “treatments” as a life saved? Sounds a bit too convenient to me…
We know other breast cancers may not progress either and we know the most aggressive cancers will take lives regardless of screening.
So how can we reasonably say screening saves 3500 or 8000 lives per annum…
It’s helpful to throw around large numbers but I don’t buy it…we know most of the decline in breast cancer mortality is down to better treatments, not screening.
The initial surge in breast cancer diagnosis is a feature of screening, the same applies to thyroid, prostate and some other cancers. The Japanese tried thyroid cancer screening but it was soon apparent that the huge increase in the diagnosis and treatment of thyroid cancer was more to do with screening, than actual cancer that would take a life. (or threaten to)
I assume this woman would have gone down as a life saved if she’d had part of her breast removed and perhaps, she’s also counted after the radiotherapy…after all, lobular carcinoma “sounds” like cancer. It’s part of the reason they’re thinking of changing the names of these conditions, neither is cancer and is unlikely to ever be cancerous – you could argue many cells in our body are pre-cancerous, especially after a certain age. Some women hear the word carcinoma and would bolt for the operating theatre…cancer!
The specialist believes screening saves lives, but he’s not having a breast removed – the implications of screening are so severe it can only be the woman who makes the decision, to screen or not. It amazes me that despite the uncertainty and potential for serious harm or even death, they still almost flippantly recommend screening like it’s a no-brainer.
So to extend screening, against the evidence, to include younger (under 50) and older women (over 70)…well, I fear that will simply worry and harm more women….that’s certainly what the evidence tells us.
Margaret McCartney has been on the case for years about this:
https://www.bmj.com/content/349/bmj.g5105
Nobody seems to have approved it but it’s all “going ahead” anyway. By now it’s probably been rolled out across the UK – I’ve not been able to find out for sure.
This article from the Telegraph just shows what the problems are: normally this lady would not have got her first mammo summons until about age 52, 5 years after this “trial” one at age 47. That’s another 5 years of not living a life of hell in and out of hospital under the shadow of a cancer diagnosis, and her daughters would have been able to finish their schooling without the worry of losing their mum. But what are these trifles to the screening evangelists who have convinced themselves they are saving us from ourselves?
I had lunch with a friend yesterday, she’s been sick with worry to the point of vomiting after a mammogram call-back – she’s been referred to a larger centre, they’ll do another mammogram or two, an ultrasound and, if necessary, biopsies.
Thankfully, it’s not a long wait but it ruined the Easter break for her, she chose to send her family down to their weekender, she stayed here in Melbourne.
She knows I don’t have CBEs or mammograms, she respects my decision but she’d be afraid to say no to screening, if she got breast cancer she’d always wonder if the mammogram would have picked it up earlier or saved her life. I don’t judge women who opt for screening, we’re all different, but even when the evidence against mammograms make sense to some women, they still choose to have screening – it sounds to be like the motivation is a fear of breast cancer and wanting to do everything to prevent that happening or at least “catching it early”.
My friend accepts the NCI report, but while breast screening is recommended, while her GP recommends it, she’ll keep having breast screening.
The insidious thing is, even if it’s DCIS or a cancer unlikely to take your life, doctors will usually say, “better to be safe than sorry” or “we don’t know what will progress so have to treat everyone”…
Some women do find screening is far from a no brainer, when they’re presented with treatments for DCIS, do some research and find it’s not really cancer at all. I read an account recently by an American women who was facing a mastectomy for DCIS, she did some reading and decided to stop the surgery and get a second and third opinion.
Of course, many doctors will side with caution, especially American doctors worried about legal liability. At the very least though, they should opt for conservative measures or watchful waiting rather than rush the woman into surgery.
I felt for her, she’s clearly terrified, can only hope she gets the all clear next week.
Funny thing is…she asked me if I was afraid that I might have cancer and not know it…I told her many of us have cancer after age 50, I only wanted to know about life threatening cancers.
We now know there are tick-tick going-nowhere cancers and life threatening ones, screening exposes us to the risk of treating the tick-tick cancers, and these treatments are far from benign.
Also, the life-threatening cancers tend to take our lives, with or without screening – it’s Dr Welch’s analogy, containing the turtles (DCIS etc.) and the birds.(life threatening cancers)
Q: Are you more afraid of breast cancer because you don’t have screening?
I’d be afraid having mammograms, knowing what I know…
If I noticed a lump or a change, I wouldn’t let the GP refer me for a mammogram either, it amazes me that’s so often the next step – I wouldn’t be happy to crush a breast lump – an ultrasound is a better first step.
With older women now having mammograms, those aged 71-74, I think we’ll see a lot more women siting waiting for their work ups – worried sick too.
https://www.smh.com.au/national/samantha-armytage-s-advice-on-mammograms-was-misguided-20180223-p4z1h9.html
Great that Alexandra Barrett addressed the advice Samantha Armytage gave to viewers, to perhaps, start having mammograms at age 40. This has happened before, female hosts of morning television having an on-air mammogram – then the well meaning but misguided/inappropriate advice. Armytage ended up having a false positive…shame she didn’t spend some time looking at the research. I wish they’d drop this stunt, but I’m sure Breast Screen loves the publicity.
UK ladies. BBC news. Thousands of women not “invited ” for their final breast screening due to computer glitch. It’s “horrifying in a programme designed to keep women safe…”
Yep. Let’s not mention the women who have their health ruined and their lives cut short due to overtreatment, eh?
How strange that this is all happening after the Irish cervical screening programme went into meltdown last week over sudden discoveries that the test isn’t accurate. Well I never!
https://www.bbc.co.uk/news/amp/world-europe-43961552?__twitter_impression=true
The director resigned and there are calls for further resignations. I saw one person say that if the government is going to be sued for every false negative, they will have to shut the screening programme down. Just the situation the UK was in during the 1990’s. No, they’ll go down the same road the UK did – say some poor cytopathologist made a mistake and has now been sacked. Cough up some damages like a couple of million and the programme will run as normal, completely blameless of any errors.
It’s all over the news. It’s a story cooked up. Any woman aged 68 would be having the last one anyway, and it clearly states in the leaflet that you can ask for one after this time. Such a dreadful load of hype…
It’s all kicking off here in the UK over the breast screening scandal. For those not in the UK and if you’ve not heard the story so far: a trial called AgeX to extend the screening programme from age 70 to 73 was started in 2009. It seems 400,000 were removed from our screening prog’s last and final letter as it was not their last screen but never got a letter at all, so didn’t get a last screen. Some of these women in their 70s are now saying it may be shortening the lives, and the news is reporting that maybe 200 may have already died as a result of missing that last screen…
All the women in the trial are being sent a catch up letter but a group of doctors have written a public letter to get this stopped.
http://www.bbc.co.uk/news/health-44016206
http://www.bbc.co.uk/news/health-44238496
Tens of thousands more women in England may have missed out on breast screening invitations dating back further than previously thought – dating back to 2005 not 2009 as originally quoted.
Guess that could mean many were saved from harm and treatment?
https://www.theguardian.com/society/2018/may/03/jeremy-hunts-rhetoric-over-breast-cancer-screening-looks-overheated
Chas there seems to be a war on between the statisticians about breast screening in the UK at the moment. The above article quotes Richard Peto denying there was a problem at all. They are all arguing with one another. Sasieni has been paid by Jo’s Tosh to do research for them which enables them to come up with some of their “evidence-based” sensational stats (often taken completely out of context). Peto wrote the famous article from 2004 with the title about how the NHS cervical screening programme has saved Britain from a cervical cancer epidemic. It clearly states about halfway in that it is all pure conjecture, but it was the “research” which enabled the screening programme to keep operating even if flouting the Data Protection Act laws.
Why are academics who were previously feeding the sensationalist media with how our programmes were world class, now saying they are rubbish? I don’t know if they are cooking up an excuse to launch an enquiry which may ultimately shut down the breast screening programme, or completely redesign it, targeting only specific groups? It’s entertaining watching their sacred cows fall on their knees, but I’m baffled all the same.
https://amp.irishexaminer.com/ireland/futureof-breast-screening-at-risk-over-payouts-471062.html?__twitter_impression=true
Where the UK breast screening programme is heading?
Seen loads of ads from solicitors and lawyers offering compensation claims.
Hope lots take legal action, these programs have been operating in a very suspect way from the start, women have been treated disgracefully, yet these programs get away with lying and misleading women, huge numbers harmed in the process.
It was all avoidable – I hope there is some justice for women – heads should roll if there is any fairness in this world. You should not be able to behave in such an unethical way – I’d say some of the conduct was potentially illegal – arguably amounting to assault – it should not be okay because it was called women’s cancer screening. Coercion is arguably assault, so is excessive pressure to screen or misleading women to screen, releasing manipulated “evidence” – the whole rotten business.
https://www.bmj.com/content/350/bmj.h139/rr-0
It will be very interesting to see how this all pans out. What has happened so far in the UK:
By the end of this month, letters will have gone out to all those women (in their 70’s) who have been “affected”. If you don’t receive a letter you are not one of those who missed an invitation to our marvellous screening programme. The letter supposedly includes a warning that mammography at this age can be more harmful than a help. (Flies in the face of why they are extending the programme to 73 year olds doesn’t it?). I’ve seen some women say they won’t be taking up the offer, and others saying they’ve been offered an appointment next October at the earliest, but that assumes they get a full uptake of routine mammography in the meantime. Breast Cancer Now, right wing press and politicians are using it to engage in NHS bashing, but what we don’t hear from are the women themselves. My theory is only a small fraction will take up the offer. Big mystery why the issue was ever brought up at all. Publicise extension trial as a failure? Solicitors and lawyers touting for business from those who think they’ve got cancer as a result. Is it all a trigger to get many to take legal action and bankrupt the programme? But to do this, lawyers would need to prove mammography works. Not sure if it’s not a way to bankrupt programme through claims to shut it down? Very mysterious, and coinciding with the failures on cervical screening recalls in Ireland too, which could bankrupt programme….
Thanks for the link adawells, which showed one response, but if you go to the main article & then hit responses there are 6 of them.
https://www.bmj.com/content/350/bmj.h139/rapid-responses
this link shows all of the responses and a very good read.
Thanks again
https://www.healthwatch-uk.org/projects/breast-cancer-screening-age-extension.html
Further info here.
Obtained via subscribing for screening updates from Gov.uk/PHE Screening. PHE Screening blogs provide up to date news from all NHS screening programmes. You can register to receive updates direct to your inbox, so there’s no need to keep checking for new blogs https://phescreening.blog.gov.uk/2018/08/15/kpi-data-published-for-end-of-the-2017-to-2018-screening-year/
Click to access service-spec-24.pdf
This is a lengthy read but none the less I read it, quite a minefield of information and still notice the focus of increasing uptake!
After the furore about the English breast screening scandal where the women weren’t “invited” to their final screen now seems problems has also hit the Scottish programme. …more lives “put at risk”
According to the Express paper 1761 women were missed off the list for their final screening
…which spared 1761 women from the horrors of aggressive medicine.
So why not ask if people want to volunteer to take the BRCA genes test and see if they have a variant that MAY disposition them to breast cancer or other cancers factoring in other risk factors?????? Instead of having these expensive and damaging mammogram screening programmes. For EVERYONE????? Has anyone ever thought of that? Haven’t they collected enough data on breast cancer cases without consent throught the screening programmes or is that data off limits?
Moo I’m sure the screeping programme thinks of nothing but that and keeps it under wraps so more misguided women “accept invitations ” to screening and keep the screener in jobs…
I actually saw a comment from a cervical screening employee on the PHE website asking about possible redundancy during the UK switch to HPV testing….so they’re really concerned about women lol..
It can’t happen soon enough! Aren’t they reducing the labs down from about 40 to 8 in UK and the samples can be machine read unlike smears? I’ve seen loads of women posting that many GP surgeries don’t have any appointments for weeks ahead, and then some places have waiting times of 13 weeks before the results come back. 😊
I think that’s why we’re still siding with excess and ignoring some of the evidence, to maintain the lucrative colposcopy/biopsy business, those aged 25 to 29 will produce a lot of hpv+ results. We know long standing evidence says no hpv testing before 30, that young women often have transient and harmless hpv infections that will clear in a year or so, they don’t need colposcopies or biopsies.
I think too, when you’ve been horribly over-screening and lying to women about the need for frequent and early screening, which amounts to bad medical advice, you have to cover your tracks – most of our over-treatment and the harm caused to women was avoidable. Don’t want legal action or heaven forbid, the herd moving away from the screening program. Moving first screen from 18 to 30 was obviously viewed as too dangerous, it might cause a panic or motivate women to take a closer look at the program…and we all know these programs don’t stand up to close scrutiny.
In UK some areas, eg Wales, have already switched to HPV as the primary test and also some parts of England, but they won’t change the screening interval until all areas have changed and we may be waiting for a few years yet. So samples will be checked to see if HPV- and then sent a recall for another test in 3 years time. However, I think that the long delays in getting results and booking for an appointment are starting to sink in with some women, that the urgency is a lot of hype.
I’d be very keen to know what they’ve got planned, or is there a need for a computer system at all? Have never understood why GP surgeries cannot set up their own systems. It’s easily done now, but wasn’t available in 1980’s. Why do we need this national database of women’s vaginas? Is this not something between the patient and her doctor?
Complete roll out of HPV testing was planned for April 2019, now postponed for December 2019. Will it be ready by 2020? Very much doubt it. I think we’re stuck with the old system for a while yet, but let’s hope uptake continues to fall and deaths continue to fall, and women wake up and realise the stupidity of it all.
https://www.hsj.co.uk/quality-and-performance/decades-old-computer-systems-putting-lives-at-risk/7023536.article#.W8Xe5bNDTeM.twitter
Kat, I bet legislation is stopping a new cervical screening summons system from being approved. It’s my guess that they can’t get rid of this old wreck of a computer system, because a new system would have to comply with current human rights and data protection, which would allow women more say in how their data is used. The old system is stuck in the 1980’s and our rights have moved on since then.
Ada thank goodness…Finally our rights are being respected…..
Oh happy days …cervicalhealthhannah reminds us October is breast cancer awareness month…..Let’s hibernate!
Awareness! You’d have to be dead or a hermit living in a cave not to know about cervical and breast cancer and the screening programs, of course, listening to the PR they trot out on these awareness drives is not going to inform you…much more likely to mislead you. The old guilt trip, admonishing naughty “unscreened” or “overdue” women, scaring us etc. well, it’s getting a lot harder, these trusted tools fall flat on their face when the target population is informed (or more of us are informed)
I’m aware alright…of the lies, the unethical conduct of these programs and the medical profession, the shocking harm it’s caused to vast numbers of women, and the abuse (coercion, linking the test to the Pill)…that’s the only awareness that interests me.
Medicine truly is the last bastion of patriarchy. Its astonishing that with all the gains women have made in recent decades in the workplace, politics, etc., the medical establishment continues to get away with treating us like children incapable of making decisions for ourselves. I believe they play into our deepest fears such as dying from cancer, or loss of fertility (for women who want children), and then use this vulnerability to lead the masses into dubious practices such as pap tests, mammograms, etc. It is heartening that more women are waking up to these unethical tactics and there is certainly hope that more will choose to join us.
Its breast cancer awareness month in the US, and my doctor’s office mailed me a card with pretty pink flowers saying “Schedule Your Mammogram!” How quaint. Because we all know (in Fairy Land) that breast cancer is a pretty pink disease, and if I just go for my mammograms, I’ll be diagnosed early and then be cured, right? Right? And those 40,000 women in the US who die of breast cancer every year (a figure that has remained largely unchanged for decades), most of whom were originally diagnosed at an early stage? Details, schmetails, who needs them? Please excuse my sarcasm – the propaganda in women’s cancer screenings is really getting to me. The truth is out there, if women want to see it, but it seems so many of them want to live in Fairy Land!
Daily fail today ladies…would u trust a £200 home scanner to check your breasts for lumps and cancer? Seems boffins in silicon valley are focusing more on women’s health at the moment. …hmmmm
https://www.dailymail.co.uk/health/article-79313/NHS-breast-cancer-screening-waste-time.html
For once a more balanced article in the Daily Fail, but I’ve been unable to locate the Lancet article it refers to, which should have come out today.
https://blogs.kcl.ac.uk/cancerprevention/2018/07/06/why-arent-we-seeing-the-effect-of-vaccination-against-hpv-16-18-on-cervical-cancer-registration-in-england/
Breast cancer screening error ‘overstated’
https://www.bbc.co.uk/news/health-46555179
Notice that there are two links on that article that lead to two more articles about the pros and cons of breast screening, as well as one on the shortfalls of breast screening.
You’d never see similar articles about cervical screening would you?! Despite it being a screening tool for a much rarer disease!
Happy New Year everyone!
Through my letter box this morning – a summons for breast screening!
Appointment now cancelled and letter in recycling box.
I checked that the leaflet did include a contact to opt out. It did. Took me to the UK Gov website where I could phone the breast screening unit and ask to opt out or contact GP. If I have to go and issue is rsised I will demand to opt out.on the spot.
Happy New Year! Good for you, Ada. I’m hoping the cervical screening service have received my New Year’s wishes to them – my third signed opt out/disclaimer since November, sent by 1st class ‘signed for’ delivery on Thursday. I will look forward to my confirmation of ‘opt out status’ letter from them shortly…
Over on the PHE blog ..to inspire us with confidence in the breast crushing programme. ..mammography apprentices have been appointed and will start training. Don’t all rush at once now to accept your invitation. ..
Seen this today! Family history OR not, I would not want my breasts radiated & flattened with approx 40 pounds of pressure on a yearly basis, let alone if I had the specific gene mutations! Also of all the so called “family history”…..my thought is, how many were over treatment in the first place?!? This would certainly assist in helping reach their famous targets and most probably increase over treatment?
https://www.bbc.co.uk/news/health-47193545
Younger women with a family history of breast cancer should receive annual screenings to pick up the disease earlier, a charity says.
Breast Cancer Now funded a study which found cancers were detected sooner when 35 to 39-year-olds at risk had annual mammograms.
NHS screening often starts at the age of 40 for women with a family history.
Experts need to balance the benefits of doing more checks against causing any undue worry or over-treatment.
The study’s authors said that more analysis was needed on the risks, costs and benefits of extending the screening programme.
“For women with a family history, removing a non-invasive tumour so early in their lives is likely to be a cancer preventive,” Professor Evans said.
The study did not include women who had specific gene mutations which can increase the risk of the disease.
People with a special risk don’t need “more screening” which is tailored to people with normal risk anyway, and sucks at what it should do. They need a detailed analysis of their risks and needs, and then make an informed decision about what measures to take.
More checks… and then what?! I’ve heard that many high-risk women are being denied the blood tests that screen for the BRCA1 and BRCA2. Some women want mastectomies and hysterectomies due to a strong risk factor. Yet women are denied that. They’re more than happy to hack away at your breast or cervix when there’s nothing wrong with them (or when your risk factor is as low as 15%). NHS needs a radical overhaul. This is ludicrous.
Surprise surprise I have received from NHS Breast Screening……an appt for 22/09/19, again they have assumed I will attend and made the appt in advance. As I did not ask for the appt I shall not be cancelling this. So infuriating to keep getting these! This is the second time now, once at age 47 to enter a trial on screening younger women which I did not attend of course and now again as I have turned 50! What a dam cheek!
Annoying isn’t it. Such a waste of time and resources. I didn’t attend my summons on the 30th August. I’ve since received another letter asking me to ring to confirm I’ve had screening elsewhere (?) or to make another appointment. Nope.
It annoys me the absolute cheek of it. Do let us know how long they pester you until the letters stop. It will be at this point that the computer will notify your GP surgery that you have FAILED to attend and to make a tit groping session a priority at whatever your next appointment will be for since you are clearly unable to find them by yourself.
After what has happened to my sister, I have been tempted to opt out altogether, but in some ways it is good to monitor what the buggers are trying on next. I cancelled my last (and 3rd) summons last January, so not expecting another for a while unless a bowel screening one turns up.
Mint that’s outrageous. I thought if you didn’t attend the 1st summons they just sent another and then left it til the next round? Maybe this is a new tactic to increase uptake or maybe what they do to serial did not attenders?
Ada I know where you’re coming from and Chas too but I felt obliged to cancel my 1st summons so it could go to someone who actually wanted it and I was so sick of the smear test shit too. I opted out of breast screening immediately after my 1st summons as I wasn’t prepared to keep cancelling unwanted appointments. It’s appalling the way they treat us
From previous research it appears that the NHS breast screen always over book these appts anyway, as they know full well a few will not turn up. I have not cancelled it as I’d like to see what happens next, how they deal with non-attenders just to keep up to date with what they are doing….naughty me!
The booklet sent with the invite & appt states on page 11: about 4,000 women each year in the UK are offered treatment they did not need. For every 1 life saved about 3 are diagnosed with a cancer that would never have become life-threatening.
You would think/hope that any woman reading that part would be put off a mammogram? Only I really don’t think most women read it through properly!
Exactly Chas…and they think us non attenders are stupid and need educating??!!!!! When the treatment involves chemo radiation and other life threatening procedures for something that in all probability would never harm?! Hmmmm
Chas, I genuinely think most women attending have not read the leaflet for years and are not aware it has been changed to say it is a choice and to read the brief references to DCIS and overtreatment. My sister has recently had her mastectomy with DIEP, which is where a replacement breast is made from a section of the abdomen. It’s been a very tough time for her and she still has a long recovery ahead of her with further checks and 5 years of daily letrozole tablets. The whole experience has been an absolute nightmare for her, and something she will never fully recover from. All because she went for a mammogram, and she was in excellent health at the start of this year. She told me she had never heard of DCIS before she was diagnosed with it, but I’ve just checked the NHS leaflet and it is mentioned in there. I don’t think she can have read the leaflet since the first one she got 10 years ago. I think if you were to ask those attending screening to describe overtreatment, overdiagnosis and DCIS most would say they had never heard of these terms, yet they are in the new leaflets.
Sadly, while medicine can make a sick person well, it never makes a well person more well. It can make a well person sick – or very sick – through a number of means. It’s a risk/benefit analysis, which I am aware of no screening campaign anywhere that gives the information to patients to make a good choice – when it comes to the risks of any proposed medical intervention or tests, its benefits, and the ABSOLUTE RISK of whatever they are testing for, what the signs and symptoms would be before whatever it is becomes an actual disease, what they could do about it THEN, and how that’s less damaging than medical interventions identified in the proposed screening test.
You know, enough information for a person to do their own risk/benefit analysis, to decide whether the proposed test or intervention is right for that person — you know, INFORMED CONSENT. And, if someone says “no” to such a test or intervention, we (somehow) don’t have the capacity for “informed refusal” – it’s a matter, so they claim, of “education” so we consent. Call it harassment or bullying or coercion. They claim they’re just “educating” us.
It gets even worse in a for-profit system like the US, where not only do you have some sort of requirement, need, and obligation to attend such tests, and if you refuse it’s because you need “education” about the disease – which may be rare, even if it’s a gruesome disease. If you refuse, it’s some sort of “lack of insight”, so you still need the test along with some sort of psychiatric intervention. Moreover, you are also obligated to pay for all of this which somebody else orders, in your best interest. What other industry can force me to buy and pay for something they are selling, which I do not want, do not consent to have, do not agree to pay for, because they think I need it?
Should I go to a car dealer, end up with a car in a grotesque color, delivered to my home, and I have an obligation to pay for it, just because the dealer thinks it’s a good match for me, his psychiatrist friend thinks it would be a good desensitation measure for my car to be in a color I hate? If this were to happen, payment would not be required under commercial law, taken from English Common Law…. there’s no “acceptance” of the “goods”. Somehow though, when this happens, and rather than the item being a material one, it involves unrepairable damage to my body, or risking its death, why or how is this a legally collectable debt?
Something “you cannot refuse” being given has implications of old mafia boss movies.
Ada, sorry to hear about your sister.
The concept on choice in women’s screening is cloudy, for so long we were pressured and misled into screening, it’s now very difficult for many women to walk away, even with information on over-diagnosis and over-treatment, I think many are scared not to screen.
The thinking seems to be, “it’s all we’ve got at the moment”…or over-treatment for something small is better than finding you have advanced cancer…the old early detection is best brain washing that went on for decades abd is still promoted here.
Women today are programmed to be doing something, even when they’re asymptomatic, we’re supposed to be looking for cancer…ever vigilant.
I know quite a few women who hate the test, don’t trust it but fear not having it, they think I’m brave not having mammograms. I’d say the evidence for mammograms is outweighed by the risks, if I get breast cancer, the fact still remains, I made the best decision, because it was based on the evidence.
I have some catching up to do, i haven’t checked into our forum for a few weeks, I lost my brother in early September, only 50, he’d been struggling with advanced Parkinson’s Disease, have been spending time with his wife and two young boys.
So sorry to hear about your brother, Eliz. This is really tragic news for you and your family and he has gone much too soon. What a terrible time you must have all been having and very sad for the children. It really has been a terrible year.
My sister has been through a nightmare that has really impacted on her health and we are hoping things will get better, but she now seems to be a perpetual patient. As well as the annual mammos, she has been put on the anti-oestrogenic Letrozole, and has appointments for bone scanning coming up. Seems to be a never ending round of appointments, and as she was a freelance carer, this work has dried up so she now has no income. She had DIEP flap surgery, and says the new breast is about the same size, but the abdomen fat is a harder consistency to normal breast tissue so it dorsn’t feel the same. There is also some pubic hair on it which she was a bit upset about. I’ve decided not to have this myself if I end up with cancer. What happens when you age and the healthy breast droops and the reconstruction doesn’t? What happens if the other breast needs a mastectomy, as there is no more abdominal tisdue to use? I think I’d rather go flat and be out of hospital in a couple of days than have the issue of substantial abdominal surgery to deal with too. She’s really been through a lot.
It’s my third letter this year! I presume they are desperate to fill their screening slots. It’s bordering on harassment. Ignore. Ignore. Ignore.
Ada PHE have published a new blog how they worked to increase uptake of breast screening in Cumbria and Lancashire . Tactics including ringing the non attenders to find out why she didn’t attend and making sure people understood about screening. Same old same old….I don’t think informed consent mentioned once!! I think it’s scary this programme is even offered if there’s any doubt. I would not want poison chemo going in me for something that might never have been a problemishes. ….
There is one screening campaign that, while not perfect, comes much closer to giving patients information needed to make their own risk/benefit analysis than the campaigns for breast and cervical cancer. And the screening I’m referring to is PSA (prostate cancer screening). But of course this is a men’s disease, and men have to be protected at all costs from bodily harms as a result of screening tests. Women, not so much.
Elizabeth – I’m sorry to hear about your brother. 50 is awfully young to be dealing with advanced Parkinson’s.
Women are still pressured and coerced into having these exams. I’ve had that problem for the past 2 years while seeking treatment for diabetes. This pressure to test has not gone away by any means, nor have the lies to convince us to screen, or the “catch it early” line. The number of CC diagnoses and CC deaths ratio has remained constant in the US since 1970, at about triple the diagnoses to deaths. The highest year for both of these was 1990 (even though population has increased). It merely gives someone more time to live their medicalized life as a professional patient.
I’ll be getting a letter when I turn 50 in January. And as far as I can see impossible to opt out of the Breast Screen harassment letter programme. It will be going straight in the bin.
Julie I opted out with no problems at all. I just rang the number on the letter to cancel and asked hem to send me a disclaimer which she duly did. I haven’t been “invited ” since!
And in breat screening you’re not automatically “invited” as you turn 50. Your invited with all the other women in your GP practice in return. I turned 50 in 2014 and was first “invited” in December 2015
It is rather odd don’t you think, that we can opt out by telephone for breast and bowel screening……but not for cervical screening.
As I did not turn up to the appt they went ahead and made I received a letter saying “you missed your appt” and to call to re-arrange, well no thank you so best I make that call to opt out permanently.
A colleague showed me a text she received reminding her of a hospital appointment she had…not connected to bikini medicine. It said every time someone failed to keep an appt it cost the NHS around £100. I wondered out loud why then it insisted on sending women mammogram summons they might not want. She said all they have to do is cancel. I said why should they cancel something they didn’t want or ask for or book themselves? She couldn’t answer….
When I get my summons letters I just bin them I never reply. Why should I? I never made the app in the first place. If it was something I had wrong with me and it was to remind me of a genuine app that would be fine.
The NhS needs to learn it cant just keep rounding women up with appointments they did not make.
I noticed PHE has been a bit quiet lately nothing since their so called ‘Quality’ Conference. I wonder if they are secretly concocting some new way of capturing defaulters’, sorry i meant ‘women.’ Its just like them to be working with Jo’s Tosh on some new method.
I just wanted to pass on what has recently happened to me. I am 35 and divorced with one daughter. I was going to a great masseuse twice a week for back and leg problems which he has reduced to almost nil. Six months ago my GP convinced me to have my first mammogram. They called me back for more screening and a breast exam by their doctor. I was told I had several lumps that were probably pre-cancerous but they wanted to do needle biopsies. I put them off , did some research and talked to my masseuse because he was always telling me about the benefits of breast massage to clear the breast ducts. At the time I thought he was offering breast massage for his own reasons but I have read many articles on the benefits.
Long story short, after four months of breast massage, three times a week, I now have no breast lumps at all. I have a clean bill of health. I was also stimulating my nipples on my own as often as I could. Several studies have shown that nipple stimulation increases the production of the hormone Oxytocin which causes the breast ducts to constrict removing milk and toxins from the breast. My masseuse called it breast massage but it was really quite a workout where he would compress each breast from the outer edges to the nipple, then strip the nipple. He kept doing it until each nipple discharged fluid. It sounds a little gross as I’m writing it, but it’s a lot better than having them driving needles into my breasts and still possibly developing breast cancer.
I haven’t had any time for men with work, my daughter, and our messy divorce. Maybe men are good for something, keeping our breasts in good working order!! I’ll let you know if anything changes.
Targeting women again with learning disabilities….I doubt they have been fully informed or even fully understood what they could be letting themselves in for? They came up with “do the test, go for it”!
https://phescreening.blog.gov.uk/2019/12/20/learning-disabilities-breast-screening-film/
Years ago I worked in a home for developmentally-disabled adults. I have a particular horrifying memory of one of the women there who was in her early 50s being unable to sleep with worry and concern about her upcoming GYN exam and pap smear – every day for about a week. She REALLY didn’t want it. I was told that she had an “awful” experience the previous time at a women’s health center, and this one was scheduled with her “regular” doctor. That didn’t do much to calm her down. Afterward, he said the doctor “hurt her”, although not as bad “as the last one”.
It seemed pretty pointless, since this woman had no clue about sex!
AFAIC, this woman was medically raped – at least a couple of times – probably more. There was NO consent on her part, and she was given no choice in the matter of her genitals being penetrated. That’s close to the definition of rape.
….all for her own good, of course.
Incidentally, I didn’t feel right about standing by and doing nothing about this. I don’t know what I could have done though. Even though I “believed” in these tests then, this scenario got me to feel that “there’s something not quite right about this”.
https://evenstarsexplode.wordpress.com/2020/01/10/breast-cancer-dcis-keeping-a-breast-and-the-need-to-keep-abreast-of-information/amp/?__twitter_impression=true
A very honest account from Even stars explode website.
Such a sad story. My sister went through a similar experience. Against my advice she went for her screening at 50 in the NHS caravan in a Tesco car park. She then had a recall letter and waited 3 weeks for her appointment. At the hospital she went through an entire day of tests – needle biopsies and scans. She was bruised and her left breast was left bleeding. The outcome was that she had “lumpy and fatty breasts”. She then underwent another invasive procedure to insert a metal disc where the biopsy was taken so future mammograms would ignore the “lump and fatty” part of her breast. She is ashamed of the scars and the mess that was made of the biopsies has knocked her confidence. She used to love going to the gym and using the sauna. She now refuses to go to the gym or anywhere where she may be exposed.
She is still very angry with herself for not listening to me or not doing research into the screening. She will never have a mammogram again.
Mint, I’m sorry about your sister’s ordeal and hope she heals quickly. I’ve posted before about my sister’s situation, where the regular mammograms she was having failed to detect a large invasive cancer. She discovered it herself from breast changes. Thankfully she’s doing well now, but feels very betrayed by this screening and to my knowledge, no longer has mammograms. Its truly infuriating how the information given to women regarding this test is cherry-picked by radiologists and mammographers to overstate the benefits and understate the risks.
Mint, your sister got off lightly. My sister believed attending would mean getting off with a simple lumpectomy if anything was found, but ended up with a mastectomy and reconstruction which involved abdomen removal cut from hip to hip.
As well as a week in hospital, she has had to wear a girdle and support bandages for some time. Has been put on oestrogen suppressing drugs, and calcium tablets to counteract loss, as well as annual check ups from now on. It is totally life changing, and many attending screening think that attending means you are preventing all of this, not running a greater risk of it. She also had to have the consultant explain lead time bias, and DCIS. 2 major things the pro-screeners claim they have informed everybody about, but really they haven’t.
So often women say, “if I don’t have screening and I get cancer, I’ll be sorry I didn’t go for screening…”
“better to be safe than sorry…”
The medical profession get away with this carnage because most women walk away thinking they’ve been treated for something that might have taken their life…it was caught early.
Once you open your mind and do some reading, you can weigh up the pros and cons, and for me, I came down firmly on the con side. More women can then see that having screening is not being on the safe side, it’s exposing you to risk, serious risk.
So sorry for all the women harmed by these screening programs – I thought they’d start to wind up breast screening, the evidence against screening mounts ever higher but vested interests are powerful in breast screening, they’ll keep it alive for as long as possible.
Just looked through the Avon book and saw a bracelet I really liked. I didn’t order though bcoz it’s the Breast Cancer bracelet. It costs £5 and means Coppafeel can text 50 ppl and REMIND THEM TO CHECK THEIR BOOKS! !!
People on social media in a lather that their smears have been cancelled due to coronavirus. What if they get cervical cancer?!
The fact they think it’s a priority at the moment shows how few women truly understand their risk level. Awareness campaigns have a lot to answer for – scare ’em stiff and keep ’em ignorant seems to be the main theme.
Yes Caroline I’m watching news atm. Non urgent ops being cancelled til further notice and thesee idiots worrying about a 99% chance of staying cancer free. They’re not worried about coronavirus which in worse case scenario 80% of us could catch.
These women were the victims of a psyops propaganda campaign which had FEAR as its motivator, especially fear of death. Of course the victims of these “awareness campaigns” feel that delaying their smears AT ALL puts their lives seriously in danger! It’s been successful at causing fear, but it’s really put an out-sized emphasis on this rare cancer with damaging tests and treatments.
If coronavirus comes “hard and fast” rather than “flattening the curve” as many want to have campaigns to help do, all hospitals will be beyond their capacity caring for corona virus patients. They’re already full of flu patients. There is not equipment for everyone. Who gets the oxygen when 10 people all need it? Forget trying to get even optional or non-urgent surgery – people coming in with heart attacks are going to be put in line behind those with greater need or better chance of recovery.
I trust that they’ll keep asking about the smear test – at least for awhile until things get TOO overloaded.
https://www.gov.uk/government/publications/nhs-screening-programmes-kpi-reports-2019-to-2020
For anyone in the UK interested in the latest uptake figures for screening. These figures are pre-coronavirus, so only up to end of December 2019, but mammography screening uptake down to 65%, so a third not going. With all that’s been said about the dangers of mammography, it is astonishing our government is still claiming the 80% uptake is the achievable target. I don’t think either of these programmes has hit the 80% uptake rate since 1990s. Whole lot needs shutting down. Cervical screening has barely budged from previous yearly quarters, but will be interesting to see the results for 2020, when they come out about November time.
Ada good to see figures going down lol!! On another note, in the news, women harmed for years by the pregnancy test drugs, sodium valproate in pregnancy and also vaginal mesh, apologies have been made to them, think in maybe another 20 years we’ll get an apology for the forced smears and unnecessary treatments and for the harms caused by mammograms and over treatment??
I scheduled an appointment with a new doctor for a “physical” to take place in March to re-up my prescription for blood pressure meds. Over the course of a few days last week, I received a message in my patient portal, a text, an email and a voicemail, all urging me to schedule a screening mammogram. Mind you, I’ve never even met this doctor, but she took it upon herself to put an order in for a mammogram at the medical center affiliated with her office. No shared decision making, no informed consent, no nothing except her assumpion that I needed to have this done because of my age. I quickly cancelled the appointment with a nasty note in my patient portal and will have to find a different doctor. But I’m so disgusted and appalled this nonsense is still going on. Women have demanded equality in all other areas of society, but in healthcare they still accept being treated like little girls who need to be told what to do. It just makes me sad.