A quarter of a million women worldwide will have died of cervical cancer by the time 2011 draws to a close. That's roughly one death every two minutes. Of those, around 900 are British women - and sadly, many of these deaths could have been prevented by a simple cervical screening.
The NHS offers cervical screening tests every three years for women aged 25 and above. After reality TV star Jade Goody died in March 2009 (aged 27) from cervical cancer, 12% more British women registered for Pap tests. However, there are still a great many British women who are poorly informed about cervical screening. I was prompted to write this article after a friend told me that she's "terrified" of getting a Pap test. I was shocked. When I moved to Germany aged 21, my German friends were surprised that I'd never been to a gynaecologist. In the UK, birth control is easy to get - it's simply handed out by GPs. It seems that there's such a problem with teenage pregnancies, your sexual health becomes a secondary factor - doctors are predominately concerned with preventing young women from getting pregnant. In order to get birth control in Germany, it's standard to have a Pap test - and we're also offered annual ultrasounds.
Now, it's old hat to pop to the gynaecologist for a biannual check-up and Pap smear. It doesn't hurt; it takes 10 minutes out of my day and leaves me with peace of mind. Having spoken to other nervous Brits, it really does seem that there's a clear lack of awareness regarding cervical screenings. I may be on a personal crusade here, but it startled me to read that something offered for free on the NHS is being ignored by over 20% of women - mostly due to lack of information.
I spoke to an Australian friend, who visits a sexual health clinic or her GP every two years for a Pap test (as per Australian health recommendations) and suggested that the British unwillingness to discuss our bodies is perhaps the reason for an lack of knowledge: "I suppose it's safe to say that Aussies are a bit less prudish than Brits or even Americans on these 'womanly' issues". Is that it? Are we Brits really so embarrassed when it comes to talking about our bodies?
In summer 2011, it was revealed that around a fifth of all women decline a cervical screening. Another survey revealed that 34% of those who declined fear that it is a painful experience and an alarmingly high percentage (21%) assumed that there would be nothing wrong with them. Yes, no one likes having a Pap test, but it's most certainly not painful (at the very most it's slightly uncomfortable for a few seconds) and any discomfort is surely worth knowing that you're in good health or can be treated in time.
Earlier this year, a British friend received some abnormal results from her cervical screening and had go back for further tests - thankfully everything is fine, but she emphasised that the experience has made her "push the importance with friends who avoided going".
Around 88% of women with cervical cancer are from developing countries. Bolivia has an astonishingly high rate of cervical cancer, and it's the most frequent cancer among women in the country. The population of Bolivia stands at 2.89 million - and each year around 640 women die from the cancer. Thankfully, some charities, including The Odysseus Foundation, headed by Huffington Post contributor Justen Schafer Hues, are helping to buck the trend in developing countries. And if you're lucky enough to live in a country where cervical screening is offered for free, there's really no excuse. Around 4 200 lives are saved each year thanks to Pap tests and this is a figure that could rise so easily.
What can be done to educate and increase awareness of the importance of cervical smears? Sitting naked from the waist down with legs akimbo is no party, I'll agree - but are we really so prim and priggish that our health is less important than a few seconds of slight embarrassment? As my mother said - enough women spend hours in labour in a similar position, how is this any less embarrassing than a quick swab? We women need to talk openly about our cervixes. We need to educate our daughters and talk with friends- only through open discussion can we dispel rumours about screenings being painful or unnecessary. We should be distributing leaflets like this in university halls of residence, in community centres, in youth clubs - not merely slipped in with a reminder letter that's so often tossed into the recycling bin.
Our GPs shouldn't just be handing out birth control after a quick blood pressure test; they should be informing women about cervical cancer risks. As women, we have the power to change these figures, and the answer is simple. British women simply need to talk to each other.
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In Australia we continue to test women under 30, some are under 17, KNOWING this WILL lead to high numbers of false positives. We are also conducting research on young women - comparing pap test and Gardasil records and several senior doctors have openly said we should leave our program alone UNTIL this research is complete. Did anyone ask these young women for their permission to do unnecessary, unhelpful and potentially harmful testing and for this research? Of course not....
It says to me this testing is rotten right to the very top...
We could have saved as many lives without the mass destruction of the healthy cervix. Now we have even more options, but the system is still not prepared to put women first. Women are also dying as a result of our program, HPV primary testing would have a better chance of picking up these rare cases, yet that would mean less money from over-treatment, so no deal.
Will I tell as many women as I can about the lies and risks? You bet I will - their "trusted" doctors are working for themselves and the program. I should add my younger sister is a casualty of the program - she endured an unnecessary cone biopsy, a devastating experience. I'm sure some in the screening world mean well, but these programs are certainly not operating in the best interests of women.
A couple of examples - in Australia our women are offered HPV testing AFTER "treatment" - of course, a HPV negative woman doesn't need treatment, she's not at risk from this cancer - but testing after treatment preserves the profits from over-treatment. So IMO, this strategy knowingly puts "not at risk" women through the trauma of an unnecessary procedure.
In the States their "doctors" test women not yet sexually active at 21 - madness. They do HPV testing AND pap testing, knowing there is no point doing both - women end up with conflicting test results and on an endless cycle of invasive testing and "treatment".
An ethical screening program MUST make an "offer" with full disclosure of risks and ACTUAL benefits and respect the right of the individual to make an informed decision to screen or not - women's cancer screening has always operated outside the law (informed consent) and proper ethical standards.
It should NOT be necessary to go looking for the truth, men were provided with balanced and respectful information about prostate screening. IMO, this program set out to get the numbers it needed to justify this expensive program to reduce deaths from a rare cancer and to hell with informed consent. Unethical tactics, misleading information, scare campaigns, target payments, anything goes, if it increases coverage - they KNEW they'd have to screen AND HARM large numbers to find these rare cases. That's not cancer screening, it's ABUSE.
This program says women must/should test, but accepts no responsibility for the large numbers left injured as a result - with damaged bodies and/or minds - some have lost babies or had a premature baby, some had unnecessary hysterectomies etc.
The system doesn't count these women and certainly doesn't care.
I can never forgive this program for the way they've treated and harmed women. I feel sorry for anyone who gets cancer, but that does not give the authorities/doctors the right to violate our legal rights, treat us badly and harm us.
The saddest thing is that a lot of this damage was avoidable - if the screening had been placed in ethical hands.
That said, there is not the evidence out there to dismiss cervical screening programmes. Countries with publicly funded health systems have no financial motivation for encouraging women to have the tests; rather, they are weighing up the cost of a comprehensive testing programme with the cost of treating women for full-blown cancer. Likewise, charitable organisations like Cancer Research UK have no vested interest in supporting screening programmes. Some of the key evidence the NHS uses to back up its screening programme is up on its website, here: http://www.cancerscreening.nhs.uk/cervical/research.html
What’s most important, of course, is that women are made aware of the factors that could make them more vulnerable to cervical cancer, so that they can protect themselves (eg, don’t smoke, use protection). They must also be made aware that irregularities shown by the test are relatively common and don’t mean they have cancer, and they must not be terrified into thinking the disease is more common that it actually is. Women must be free to make their own informed decision about the risks and the benefits, and we are lucky in the West to be able to have open dialogues about options available.
Australia has a publicly funded healthcare system, but our screening programs are loaded with vested and political interests. The cancer charities are part of the problem, sponsored by the Govt and/or self-interested groups - far from respecting informed consent and warning women of risks and benefits, they simply push the programs. These groups are powerful and exert enormous influence - the Pink Ribbon juggernaut is one example. They also divert funds, research and attention away from other important health issues - heart disease, the No 1 killer of men and women, is forgotten - stuck on a back-burner while awareness campaigns keep coming for a rare cancer and pushing women's screening programs without properly advising women & ignoring informed decision. Breast Screen don't mention over-diagnosis to women and Papscreen (the last time I checked) didn't mention false positives (when our referral rate is a massive 77% for a cancer with a 0.65% lifetime risk!) but they mention false negatives, which are uncommon - because that serves to scare women into frequent testing. It has dismayed me for decades that women could be treated this way in developed countries who claim to respect women as equal citizens.
Our cervical screening program is out of the Ark - excessive, harmful and shockingly, more than a decade behind the evidence, but no one in this country is doing anything about it - protecting women is not a concern. It reflects very poorly on our medical profession.
"Few would disagree that clear information about the benefits and harms of any screening procedure should be available to all individuals invited to participate in any programme. In practice, however, this often involves nothing more than providing a leaflet and possibly offering a brief discussion with a health professional with the emphasis on achieving a positive response. This is not enough. Information provided should be based on results from respectable scientific trials in a form that is acceptable, accessible and useful to those receiving it. There must be information about the whole screening process, including follow-up tests, some of which may be invasive and unpleasant. We should also resist the current tendency towards “disease-mongering”, where ordinary and inevitable life processes are transformed into medical conditions amenable to treatment by those seeking to promote their products.
Information is thus another central concept in modern health care in general and screening in particular. It must be provided not, as so often in the past, with the purpose of encouraging participation in a programme, but to give a balanced and understandable picture of the options and the possible outcomes, with the end-point being truly informed consent (or refusal) to
participate."
If you really believe that us 'lucky girls in the West' are given the means, as defined by the WHO, to make a truly informed choice, you are sadly misinformed.
Every time we're 'due' for a test, we get a summons (can't call it an invitation because there's an attendance slip at the bottom of the letter) and one of the NHS leaflets Ms. Preece has linked to in her article. Read it VERY carefully.
The WHO article states clearly that "There must be information about the whole screening process, including follow-up tests, some of which may be invasive and unpleasant." Hmmm... doesn't mention follow-ups in the leaflet, does it? Sure, there's lots of information - but it's all carefully worded to promote the benefits of screening. 'Informed choice', according to the screening Wallahs, means letting patients know what screening can or cannot achieve. The thorny issue of false positives, meaning overdiagnosis and overtreatment, is carefully swept under the carpet.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1116583/
Screening ultrasounds are unhelpful and harmful...it's shocking that the German medical profession offer things that can only harm women - they have a higher responsibility to only recommend evidence based tests and exams. Some women would assume that something being offered by doctors must be a good idea - nothing could be further from the truth. I wonder how many German women end up having unnecessary procedures and lose healthy ovaries.
Beware!
http://www.medicalnewstoday.com/releases/227614.php
The pap test is so much more likely to harm me than help me, I protect myself by not consenting to it. In the UK it is called informed decision - something that is denied German and Austrian women.
I read you are still living in Germany... Further, you write "Now, it's old hat to pop to the gynaecologist for a biannual check-up and Pap smear". Biannual pap test? Yes, that's what German and Austrian doctors tend to do... this frequent testing highly increases the risk of treatment for a false positive for no additional benefit. During your next visit, please, ask your doctor who profits from it? Certainly not the woman, you. When challenged with the facts (eg Angela Raffel, et al BMJ 2003) that are not easily accessible to women, I'd be curious to know how he/she reacts to it and how he/she then justifies annual/biannual pap tests without informed consent.
It seems the profession is still very paternalistic and women are still regarded as second class citizens.
One excellent article written by an American doctor is worth a read, along with the comments. More and more women are waking up, asking questions and demanding real information and some respect for informed consent, sadly, many have already been harmed by over-treatment.
Dr Joel Sherman is the name of the doctor and he also runs an informative forum that lists important medical journal articles in the side bar.
http://patientprivacy.blogspot.com/2011/09/womens-privacy-concerns-part-7.html
http://www.kevinmd.com/blog/2009/11/informed-consent-missing-pap-smears-cervical-cancer-screening.html
http://www.guardian.co.uk/society/2003/may/22/genderissues.publichealth
Keldyl, did you go to university to learn how to patronise people, or is it just a natural talent you have? The reason I would never agree to a DRE or PSA test is not due to the fear of getting fingered by a strange man, nor do I have a needle phobia. It's because the test is unreliable and the disease unpredictable, and testing would mean risking damage to my body for little benefit. Scientists are working on a urine test at the moment, so hopefully at some point in the future the benefits may outweigh the risks and I may change my mind, since it is a very common cancer. My body, my choice.
Scroll through your comments and it's quite clear that you view all the women who are harmed by treatment as collateral damage. You knew about the incentive payments to GP's you know full well that information is being withheld from women... treat 'em mean, keep 'em keen, eh? What part of the screening programme are you involved in, may I ask?
I've started a memorial wall for victims of HPV, see http://kegel.com/hpv/deaths/lost.html
in hopes of encouraging more women to get screened and to vaccinate their kids.
I do agree its a huge cost for saving a small amount of people's lives, but how can we stop it now. How can we say to someone 'if you'd had this 10 years ago, we would have caught it, but now, sorry, its an early grave for you'. Personally I think new technologies such as hpv testing and the vaccination will replace the screening programme within the next 15 years time, but until then, we need this vital service
I work in the screening programme and seeing young ladies who are screened too late as they didn't bother going for their screening tests is really heartbreaking, and I don't even see them in person. Yes its only about 10 women a year in my area, but its 10 that could have lived
Kedyl,
It doesn't even come down to that for me. I would never permit any screening test that is intrinsically unreliable for a rare cancer. Even with a fairly common cancer, like breast cancer, it's a Q of weighing up the risks, benefits & assessing your risk profile. It's a huge mistake to assume all screening is a great idea - it has the potential to harm you and even destroy your health and quality of life. (and even kill you - perforating your bowel during a colonoscopy)
I also rejected mammograms - over-diagnosis is a serious risk and the benefits of testing are IMO, controversial. The UK is fortunate to have some amazing advocates fighting for informed consent in women's cancer screening and is doing a full review of breast screening, thanks to the pressure applied by Prof Baum, Susan Bewley & others.
Mouth cancer occurs as frequently as cc - do you ask your dentist/doctor to carefully examine your mouth every year or two and laser off or cut out anything that "looks" abnormal? Why not? You might end up with a bleeding and sore mouth that makes eating difficult for a while and perhaps, other issues - yet this is what we do to women every day in VERY large numbers - and the repercussions are even more serious.
The numbers say it all for me - lifetime risk 0.65%, referral rate 77%....
The hpv injection hopes to be a huge success in irradicating cervical cancer, given to 13 year old girls. However the vaccine is still in its very early stages, and only protects against certain strains of hpv. Obviously there is still a huge number of women who will not get the injection, because unless you are still a virgin, you could have been exposed already.
In the UK, with a negative smears, you only get screened once every 3 years. Unfortunately in England it has rised to 25 before you can get screened, therefore unfortunately many girls have developed cervical cancer before they are screened They say that 10 years of exposure to the hpv virus could develop into cervical cancer, therefore a girl losing her virginity at 14 is at risk. 10 years is also only a guideline and can occur a lot quicker.
As for treatments, the main worry is infertility in young girls who need treatment for abnormal cells. Careful consideration is taken into removing these cells and it is very often done by cold coaguation and other forms rather than LLETZ.
Young women are lucky in your country, here in Australia we're still pap testing teenagers knowing it can only harm them and this group produce the most false positives - 1 in 3 for those under 25.
You can pap test every teenager and women under 30 and not make a shred to difference, the same tiny number of deaths will occur - pap testing harms young women and can place them at a disadvantage - the very rare cases that occur before 30 are usually adenocarcinoma, an even rarer form of cc and one often missed by pap testing...that can mean a young woman might be reassured by her false negative result and delay seeing a doctor for symptoms - get a later diagnosis and poorer prognosis. Not ONE country in the world has shown a benefit pap testing women under 30#. (but all have evidence of harm)
#"Cervical cancer screening" in Australian Doctor, July 2006 by Assoc Prof Margaret Davy and Dr Shorne. (a download)
Young women DO produce lots of highly abnormal pap tests - false positives due to transient and harmless infections or the pap picking up normal changes in the maturing cervix.
If women wish to test, that's their business, BUT cancer screening, legally and ethically, requires informed consent for a reason - it carries risk to a symptom-free person - the highest ethical standards must apply - as we see in prostate screening. Women have been treated appallingly - this rare cancer and these screening programs have always operated outside the law and ethical standards. Once a test has been approved for population screening AFTER randomized controlled trials, you make an OFFER to women with FULL disclosure of the risks and ACTUAL benefits - that has never happened...
Women are basically ordered into testing with no "real" information, doctors get target payments for pap testing behind our backs, there is massive and hidden over-treatment and women left with cervical and psychological damage....the damage has been awful and all for a rare cancer with a 0.65% lifetime risk. IMO, this can never be justified - if you care about women, you don't treat them with near contempt.
How many lives does cervical screening save?
Scientists estimate that cervical screening saves around 5000 lives each year in the UK.
Cervical screening can prevent at least:
• 75% of cervical cancers in women in their 50s and 60s,
• 60% of cervical cancers in women in their 40s,
• 45% of cervical cancers in women in their 30s.
Since the introduction of cervical screening in the 1980s, rates of cervical cancer have almost halved.
In what way do you NHS profit from this screening process?
0.65% is the lifetime risk of cc - it affected 15 women in every 100,000 here in Australia before screening started and was in natural decline, so screening could only "partly" explain any fall - the number now is 9 women in 100,000 (that's cases, not deaths) after decades of testing. This testing sends 77% of Aussie women for colposcopy and usually some sort of biopsy after an "abnormal" pap test - almost all are false positives.
There are now far better ways to deal with this rare cancer and women who are concerned about this cancer should demand hrHPV primary triage testing and the Delphi Screener.
So, when someone gives you a percentage, ask them how many women need to be screened and for how long to save one woman from cervical cancer. The answer: 1000 women need regular testing for 35 years to save one woman....not quite as impressive as 90%.
I'd urge all women to do their reading and understand what they're agreeing to...make it an informed decision and don't rely on pro-screening sites. Start with the research by Dr Raffle...https://www.ncbi.nlm.nih.gov/pmc/articles/PMC153831/
http://www.sciencedaily.com/releases/2011/10/111020163909.htm (Delphi Screener)
Actually, the death rate from this disease was dropping long before the NHS screening programme was introduced. We don't know exactly how many lives are truly saved - it's all guesswork, because, as the independant article points out, this test was introduced before any proper evaluation.
75%, 60%, 45% of WHAT? What is your actual lifetime risk, what does 'treatment' entail, what are the risks of treatment? I suggest, before you jump on the pap-happy bandwagon, you try doing some thorough research. Angela Raffles papers would be a good start.
The government, for the past thirty years, have been setting aside around £65 million in order to reward GP's for hitting targets with cervical screening. More bums on seats, more cash for them.
http://news.bbc.co.uk/1/hi/health/114086.stm
http://www.independent.co.uk/news/dr-phil-hammond-1273519.html
I could explain to you why my wife doesn't go for smears, but I'd be wasting my time. Let me just assure you of this - if you're one of the *naughty* 1 in 5, you can't even go to the GP for a sore throat without them trying to bully you into having a smear. You can't move for *awareness* campaigns, you can't open a newpaper or magazine without the importance of smear tests being rammed down your throat. Lack of awareness of the disease is not the problem here. Lack of respect is.
I'd firmly recommend, Rachel, that you read the final article and ask yourself exactly why you *need* to have your reproductive organs probed. And how much do you have to pay for this service, I wonder?
http://www.guardian.co.uk/society/2003/may/22/genderissues.publichealth
http://www.margaretmccartney.com/blog/?cat=5
http://www.liebertonline.com/doi/pdfplus/10.1089/jwh.2010.2349