Comment from: Elizabeth | 4/5/2011 12:07:46 AM

Why would the govt and doctors start telling us the truth now? The main feature of womens' cancer screening is a total lack of respect for the legal and ethical requirement of informed consent - the entire focus is on Govt-set targets with no regard for the health of individual women. We get dishonest one-sided promotions of screening tests, no risk information and basically an order to screen. Many women don't even understand pap tests are like colonoscopies and PSA testing - elective cancer screening tests. Of all the screening tests, you're least likely to benefit from pap tests and most likely to be harmed or distressed by a false positive and unnecessary and potentially harmful over-treatment and biopsies. The lifetime risk of this rare cancer (cervical cancer) is 0.65% (and no more than 0.45% of women are helped, 0.20% get false negatives and may be disadvantaged by testing by being falsely reassured) - more than 99% derive no benefit at all, but 77% of Australian women WILL be referred at some stage after an "abnormal" result for colposcopy and usually some sort of biopsy. Almost all are false positives caused by this unreliable test. Papscreen don't mention false positives in their brochures...most women are completely unaware of the risks and the rareness of the cancer. It occurs as frequently as mouth cancer...and less often than thyroid cancer. Lung cancer is the No 1 killer in the cancer category with heart disease leading the way. Cervical cancer is and always was, rare. The fear of cervical cancer has been manufactured by the screening authorities and doctors. This program is IMO unethical and falls foul of screening guidelines - it harms many, to help very few...and we don't know for sure whether it helps anyone - there are no randomized controlled trials for the pap test. It was a cancer in decline before screening started and clearly other factors are at work and contributing to the continued decline - better hygiene, less STD (suggested By Dr Welch in his new book, "Over-diagnosed"), better condoms and more condom use since the AIDS scare, fewer women smoking, more hysterectomies etc... An unreliable screening test for a rare cancer would usually be ruled out as unethical. Women get very little real information about screening - very few women are giving informed consent for cancer screening. Cervical damage can mean infertility, cervical stenosis (endometriosis, infections and may require surgery) cervical incompetence - miscarriages, high risk pregnancy and cervical cerclage, premature babies, more c-sections and psych issues. So much damage for a very small risk. Our program is particularly bad because it over-screens which increases the risks for no additional benefit - it also screens inappropriately by including women under 30. "No country in the world has reported a decline in the incidence of or the mortality from cervical cancer in women under 30, irrespective of cervical screening. Many countries do not perform cervical screening on women under 30". ("Cervical screening" in "Australian Doctor" 2006 by Assoc Prof Margaret Davy, Director, Gyn-Oncology, Royal Adelaide Hospital and Dr Shorne, GP) So, why are we still testing young women? To make matters worse - we also know that testing young women causes great harm - 1 in 3 pap tests WILL be "abnormal" due to the pap test picking up normal changes in the maturing cervix and transient and harmless HPV infections. (false positives) Cervix cancer is VERY rare in young women and when it occurs, is usually missed by pap tests. So, young women are either left worried sick and asked to re-test a year later or referred and risk cervical damage. We should NOT be testing young women and we should tell them the truth - high risks for no benefit. Two yearly testing is too often and amounts to over-screening which increases the risk of a false positive and unnecessary treatments. Finland has the lowest rates of cc in the world and sends the fewest women for colposcopy/biopsies - they offer 5 yearly screening from age 30 - this still sends 35%-55% of women for colposcopy/biopsies at some stage, but it's the best you'll do with this unreliable test. Almost all of this information is deliberately withheld from women. The Govt even pays our doctors to reach screening targets for pap tests which IMO, puts our doctors in a potential conflict of interest situation. These payments are undisclosed to women and are IMO, unethical. (Financial Incentives Legislation and PIP scheme) When you're looking for a very small number of women it means you MUST screen (and distress and possibly harm) large numbers to stand some chance of finding the few with a real problem and that's why there is SO much pressure on women to screen - to feed a very expensive screening machine that can only help 0.45% of women - in other words, political and financial considerations are behind this testing. (and emotional - many women who've had "treatment" after false positives believe they were "saved" by the test) Mammograms - same story - no real information, just one-sided spin. The risks are so high with breast screening that Prof Michael Baum, breast cancer surgeon, has called for the UK program to be stopped...too many women are being harmed. There are concerns about false positives, over-diagnosis (DCIS) and risks attached to exposure to radiation and the compression of delicate breast tissue. Breast Screen do not inform women of the risks - breast screening is a close call and I'd recommend every woman do her own reading before agreeing to testing. Go to the Nordic Cochrane Institute's website and read, "The risks and benefits of mammograms" - produced because they were so concerned at the misleading and incomplete information being released to women. I'm afraid when it comes to cancer screening, women are treated like a bunch of ignorant sheep - the Govt and doctors arrogantly believe they can make decisions for us and risk our health - they can keep us in the dark, mislead us, pay off our doctors, use scare campaigns, demand we screen and scold us if we choose not to screen and make their entire focus the feeding of their expensive screening machines. I rejected both screening programs and I didn't get the information I needed from my Dr or the Govt. It concerns me this lack of respect continues...women should demand honest and complete information and a choice about testing - our informed consent matters as well. It is not something that only applies to men. Women can access the truth at Dr Joel Sherman's medical privacy website under womens' privacy concerns - in the side bar you'll find some great medical journal articles. I'd recommend the research by Dr Angela Raffle, UK cervical screening expert ("1000 women need regular smears for 35 years to save ONE woman from cervical cancer"and Dr Richard DeMay's article. So, hardly surprising there is little real information on Gardasil. Given cervical cancer is rare, a little bit of prevention would go a long way. Just using condoms has shown to reduce the risk of HPV by as much as 70% - that's a big plus when we're talking about a very small risk.

Comment from: elsie | 4/5/2011 9:43:49 AM

If immunisation or pap smears etc. can prevent a death it is worth it. Elizabeth says its a small risk, however if that was my mum, sister or friend (which it has been) that was saved by the screening or immunisation it is all worth it. There is nothing that can compare the grief caused by losing someone to a disease that is preventable. I personally had 2 friends that have had cervical cancer both both under 30 (one 16 years old, sexually active at a very young age and my 26 year old best friend). My family has very high deaths from cancer, bowel cancer, breast cancer, brain tumors etc. all of these have been in young and old in my family, so if any of it is preventable or curable by early intervention from screening or immunisation it can only be a good thing. I don't care if the statistics say there is a minimal chance of it happening, if someone I love is saved by it, it's all worth it.

Comment from: Elizabeth | 4/5/2011 5:14:37 PM

Elsie, I doubt VERY, VERY much a 16 year old girl had cervical cancer - there has never been a recorded case in a girl that age. But the risk of a false positive in a teenager is SKY HIGH...and that's why it is considered unethical to screen women under 25 - some countries say 30. It doesn't help, but exposes young women to great harm. Sadly, many women walk away from biopsies and LEEP and never know the treatment or biopsy was unnecessary and caused by a false positive. If you have a biopsy - always ask for a copy of the pathology so you know what you're dealing with and be careful agreeing to treatments that leave no pathology - it conceals over-treatment. Get a second opinion if necessary - American doctors have a reputation for doing aggressive and damaging treatments for mildly abnormal or unclear pap tests. You can get an abnormal pap test for infections, inflammation (tampons, condoms), hormonal changes (pregnancy, menopause) trauma (childbirth) and for perfectly normal changes that occur in women under 30 and in menopausal women. If women, given all of the facts, wish to test, that's entirely up to them, but at the moment, women don't get honest and complete information and that is totally unacceptable. So many women are harmed unnecessarily and can end up with serious health problems. Even a high risk woman should refuse over-screening - it greatly increases the risk for no or little additional benefit. Before screening started - cervical cancer occurred as frequently as mouth cancer - few people worried about these rare cancers, now with all of the hype and over-detection/over-treatment many women think cervical cancer is common - it's not - it's rare, false positives are common. I'd urge every woman to DO some reading - don't assume you have the answers - do your body a favour. At least make an informed decision about screening. Good luck everyone!

Comment from: Elizabeth | 4/5/2011 5:25:54 PM

Elsie, Also - cervical cancer is NOT preventable relying on pap tests - there are no randomized controlled trials so we'll never know for sure whether pap tests helps anyone, but if they do, it's only 0.45% of women at most - BUT one third to a half of the women who get cc have had a recent NORMAL pap test or a series of them (false negatives) - all women should understand the pap test is unreliable and persistent and unusual symptoms should be addressed - don't ignore symptoms even if your pap tests have been normal. The VERY rare cases that occur in women under 30 are usually false negative cases - probably because young women tend to get an even rarer form of cervical cancer - adenocarcinoma - and the pap test is bad at picking that up... This is why pap testing does not change the tiny death rate in women under 30. The risk of this cancer CAN be greatly reduced - and it's only a very small risk to start with - using condoms in a partner of unknown HPV status reduces the risk of transmission of HPV by 70% - also, don't smoke, limit partners and delay sexual activity until you're 18. Sadly, there is little discussion about prevention.