I had a brush with cervical cancer. A regular pap test a few years ago came back with an abnormal reading and I had to go back to my doctor. Normally I get a letter a week later from my doctor saying that everything was coo- coo-cachoo with my lady bits and not to come back for another two years.When another test came back with abnormalities my doctor sent me packing to a gynecologist for more tests. Long story short it turned out I had pre-cancerous cells that needed to be removed. A day surgery later, and a few pap tests every few months, then yearly and now thank god, back to the regular two years where (touch wood) they have since been okay.
When I hard that I may have cancerous cells I went into overdrive. I googled cervical cancer and the worst case scenario (apart from death) was a full hysterectomy. I am by my own admission a drama queen and went for the worst case scenario straight away and asked my partner what he would do if I had to have a hysterectomy and we couldn't have kids. He smiled, wiped my tears and said we will have lots of puppies instead (yep, he's a keeper).
In hindsight, what scared me was the what if. What if I was one of those girls who didn't have regular pap tests and I didn't find out I was sick till it was too late? What if it was cancer? What if it comes back?
Cervical cancer is often over shadowed by its more widely known cousins Breast, Bowel and Ovarian, and the main reason for that is that cervical cancer is one of the cancers that is most preventable and curable. A pap smear every two years can eliminate up to 90% of cases of cervical cancer and a few minutes of awkward is the best way to protect yourself.
What causes Cervical Cancer?
The following is courtesy of the Cancer Council Australia website:
The cause of cervical cancer is unknown. Factors that put some women at a higher risk of cervical cancer include:
- infection with the human papilloma virus (HPV)
- being the daughter of a woman who used the drug diethylstilboestrol (DES) during pregnancy to prevent a miscarriage
- smoking, which increases the risk of cervical cancer fourfold.
The National Cervical Screening Program started in Australia in 1991. Since then, the cases of cervical cancer has been halved. The recent introduction of vaccine Gardasil will also hopefully help future generations avoid abnormal test results, however the Cancer Council of Australia highly stress that Gardasil is NOT a replacement of regular pap tests.
Gardasil protects you against two strains of HPV which causes 70% of cervical cancers. The drug is most effective on women who are yet to become sexually active but talk to your doctor about the vaccine and whether they recommend it for you.
British celebrity Jade Goody was the first person to really put a name to cervical cancer. Goody became well known in the UK when she entered the Big Brother house in 2003. From there she launched her own perfume, had her own shows and wrote two best-selling biographies. But to the rest of the world she became well known when she died of cervical cancer in 2009. Ignoring doctors warnings of coming in and getting a abnormal result on a pap smear checked out, Goody was diagnosed with cancer when it was too late. Treated for the cervical cancer part, it was then discovered that the cancer had spread and she was diagnosed as terminal. Goody herself admitted that this all could have been avoided if she acted when doctors wanted her too.
It was the wake up call that doctors had been waiting for. Regular pap tests are serious and could save your life as shown unfortunately in the loss of Goody's life.
This post is designed to scare you. To scare you and your partner into action. If you or your partner are not having regular pap smears then START NOW. You don't have to have had and STI or STD to get cervical cancer as even the Cancer Council of Australia admits they don't know what causes it. I have friends who haven't gone for awhile because it's awkward. Yes it awkward, not painful, but wouldn't you rather a few moments of up close and personal with your doctor then the risk of losing the ability to have children or the loss of your life?
I'm here today because of a pap smear.
Jade Goody photo by Eamonn McCabe
I'd urge you to do some research. Cervical cancer is rare, was always rare and in natural decline before testing started...
ReplyDeleteFalse positives and over-treatment are very common in this country, thanks to serious over-screening. No woman needs an absurd 26+ pap tests.
Over-screening greatly increases the risk of false positives for NO additional benefit over 3 yearly testing and only marginal benefits over 5 yearly. Lifetime risk of cc is 0.65% - it's rare - take out false negatives, factor in natural decline and less than 0.45% could possibly be helped by pap tests - BUT our lifetime referral rate for colposcopy and usually some sort of biopsy after an "abnormal" pap test - a whopping 77%...one of the highest referral rates in the world. (HIGHLY profitable for doctors, labs, specialists etc) Almost all referrals are false positives. Some women are left with issues after over-treatment - cervical incompetence, premature babies, the need for c-sections, cervical stenosis, infertility, high risk pregnancy etc
Our program was always excessive, but is now more than a decade behind the evidence; women are being knowingly over-tested and over-treated which risks their health.
Finland has the lowest rates of cc in the world and refers the fewest women (fewer false positives) - they offer 7 pap tests, 5 yearly from 30 to 60. The Dutch have the same program, but will shortly move to 5 hrHPV primary triage tests offered at 30, 35, 40, 50 and 60 and only those positive will be offered a 5 yearly pap test. (until they clear the virus) - by age 40 only 5% of women are HPV positive and "at risk" from cc. Those negative can follow the HPV program or if monogamous or no longer sexually active can forget all testing and revisit the subject if their risk profile changes...this will further reduce testing and potentially harmful over-treatment. The Dutch also have the option of the Delphi Screener, a self-sample HPV device.
We test too early, too often, with no informed consent and we only offer women HPV testing AFTER treatment. HPV negative women don't need treatment. IMO, our program is now controlled by and operating for the benefit of others - vested ($$$) and political interests. We also have no advocates for informed consent in this country - no one challenging this program and ensuring proper ethical standards. This program is not in the best interests of women - far from it - it's harmful. IMO some women may also be dying as a result of our program - HPV primary testing is more likely to catch these rare cases, including adenocarcinoma, which is missed in more than 50% of cases by pap testing. A review of our program has only just started, more than a decade after calls were made for change...the delay is inexcusable. The report is not due until 2014 so women will continue to be over-screened and harmed for some years to come...
I also do not agree with our GPs receiving target payments for pap testing, it creates a potential conflict of interest. (PIP scheme and Financial Incentives Legislation)
Young women produce the most false positives, 1 in 3 for those under 25, yet after decades of testing not ONE country has shown a benefit pap testing women under 30, but all have evidence of harm. This is why many countries do not test before 25 or 30. You could pap test every woman under 30 and make NO difference to the tiny death rate, but you'd harm and worry the masses.
Keep the risk in perspective: 1000 women need regular testing for 35 years to save one woman from cervical cancer. (Raffle et al, BMJ 2004)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC153831/
http://www.theage.com.au/national/start-pap-tests-later-say-doctors-20091120-iqyo.html
http://www.medicalobserver.com.au/news/no-delay-on-cervical-screening-review
http://www.guardian.co.uk/society/2003/may/22/genderissues.publichealth
http://www.sciencedaily.com/releases/2011/10/111020163909.htm
http://www.delphi-bioscience.com/Delphi-Screener/Paginas/default.aspx
Please read the comments by Dr McCartney.
ReplyDeletehttp://www.wnol.info/?p=6653
I blame the doctor who pap tested Jade Goody for her death. NO teenager should be pap tested, it is unethical and can only harm. Jade Goody was traumatized by that early test and the unnecessary, painful and invasive procedure that followed; hardly surprising she was reluctant to submit to more of the same in her 20s.
We should protect women from harm - responsible countries do not offer testing before age 30.
I made an informed decision, (as a low risk woman) almost 30 years ago not to test at all - every woman is entitled to the facts and should have an opportunity to make the best decision for her health. When we're misled, we make bad decisions - we allow unnecessary testing, early and over-screening and over-treatment.
Hi Eliz52, first of all, thank you for stopping by and leaving a comment!
ReplyDeleteYou are of course entitled to your opinion, but I am a little alarmed that you believe a pap smear is unethical for teenagers if they're having sex.
Anyone having sex, no matter the age, in my opinion should be checked for STIs and STDs even if no symptoms show, as a responsible person, to protect not only themselves but their partners. A pap smear is another way of looking after yourself - if anything for peace of mind.
I agree with you completely that it's a woman's choice and that we need the facts, and then can make a decision, but a pap smear is a quick look and a swab and your done. In Goody's case she had been treated for an abnormal swab before, and you're probably right, that scarred her (mentally) but she herself admitted she shouldn't have ignored the doctors.
I do find it interesting that the UK don't recommend them till age 27, where in Australia it's recommended from the time you start having sex or around 20. It was a good article you posted, and yes most abnormal cells probably will replenish (I was told this could happen but in my case it wasn't to be) but I'm surprised at how strongly you feel about the test.
100% behind you in women being informed, but a pap smear is not a scary event; what the result of the pap smear may be, but the initial test itself is not.
Hi Eliz52 - I only saw your second comment after I responded to your first (for some reason your big post went into my spam) but I wanted to publish it because you raise some very good points and people should read them.
ReplyDeleteI still don't believe a pap smear is a scary or a bad thing especially when it probably saved my life. I felt fine and probably would have only found out, when it was too late if my cells had in fact become cancerous.
However, I agree with some of your points ie: doctors getting cashbacks etc, but if your already at the doctor and it's not going to cost you anything more then a doctors visit, why not?
As for age, women only get free breast screenings when they're over 50 but more and more cases of women much younger then 50 are being diagnosed with breast cancer. Age should have nothing to do with it and cervical cancer is not limited to women of a certain age like other cancers.
Unfortunately, cancer is a bastard that gate crashes many of our lives and I'm of the believe if we can get a free test that may rule out at least some form of cancer, power to it.
You did not have a "brush with cervical cancer".
ReplyDeleteConsider this. The cervix goes through changes throughout a woman's life. If we did pap smears on girls entering puberty, the "abnormals" would be sky high. This is also true for women who have become pregnant (this is why many eithical doctors will not do pap smears on pregnant women), women entering or going through menopause and so on.
In the United States we have one of the highest rates of "abnormals". The American Council of Obstetrics and Gynecology even admits that close to 90% of women who get regular pap smears will be referred for colposcopies, conization or LEEP at least once in their lives. This leads to HUGE profits for the gyne industry.
If you believe that all or almost all of these women are being "saved" from cancer, then it would make sense that 90% of women who do not screen would develop cervical cancer which is not the case.
Your intention to "scare" women into testing is unethical since you are saying you had a brush with cancer which is far different than an abnormal.
Skin cancer is one of the leading cancers, yet we don't have every sun spot and abnormal pigmentation removed. Technically these are "abnormals".
Women should consider all the facts and then decide what is right for them.
One more point. Doctors do not use the term "pre-cancer" with each other. There is no such medical term, and doctors DO NOT know which abnormals might turn to cancer and which will not. This is why ALL abnormals result in treatment.
ReplyDeleteI had an aunt who had abnormal pap smears that were treated on and off for most of the 1980's. After she started to have more and more pain and bleeding with each "treatment", doctors then suggested a hysterectomy. In the US 1 out of every 3 women ends up with a hysterectomy, the highest rate in the world.
She walked away and never dealt with her last "abnormal" pap, and that was back in 1987. Guess what? She is alive and well.
GOAS, Yes, I do feel strongly about this subject. I've watched women being harmed over three decades and I've listened to Papscreen and doctors misleading them. It's been hard when you know the facts. The tragedy is that almost all of this damage is avoidable when screening is in responsible hands. If you're worried about this rare cancer, I'd urge you to do your reading and then perhaps, you might feel like lobbying the Govt for a program that is in the interests of women, not doctors and profits. Those women who want testing should have the option of HPV primary triage testing and the Delphi Screener.
ReplyDeleteScreening teenagers (and those under 30) simply doesn't work, you harm them. I don't agree with opportunistic testing (ambushing women in consults) - it should be the woman's decision if and when she tests and who takes the test. Papscreen encourage doctors to put women on the spot in unrelated consults, they only care about the target - when you're looking for a few needles in a vast haystack and with an antiquated test, you must screen around 80% of women regularly to stand any chance of bringing down an already small death rate and they know they'll harm vastly more than they could possibly help - there is evidence that ambushing women to have pap tests causes psych issues - for example - some women prefer a female doctor for pap testing.
Papscreen though need to justify the huge sums spent on screening and so they focus on the target and coverage with no regard for the health of individual women or their legal rights. That must change - it was never acceptable and always unethical.
GOAS, you may not find pap tests "scary" but many women find them painful, (especially those with arthritis and some other conditions) violating/humiliating (including those who've been sexually abused)...these feelings are valid and should be acknowledged and not simply dismissed by doctors.
Thanks for your response - if you had "treatment" for "pre-cancer" and are under 30, you were almost certainly over-treated - if over 30, there is a 0.45% you were helped by the testing and treatment. Not many women understand this testing is looking for 9 women in 100,000 - I'm not anti-screening, but I know there were always far better ways of dealing with this rare cancer without harming the masses and now there are excellent ways of helping these rare cases - hrHPV primary testing and the Delphi Screener.
I like your website BTW, the graphics are really eye-catching and love the 1920's lady on the soapbox. I'll keep my fingers crossed, maybe you'll be fighting for a better deal for women very soon.
Our GPs should hang their heads in shame - their first duty is to us, not this harmful program and profits. To be fair, I know more of our GPs are extremely worried about the situation and have started warning women - to start later and test less often.
Best Wishes, Elizabeth.
(By the way, I'm almost 54 and have never had a pap test, an informed decision made almost 30 years ago. As a low risk woman, I took myself off to the Medical Library on campus to get the facts. I had to go looking for the answers in 1980, it is disgraceful that 30 years later there is still no respect for informed consent for women in this country and real information is still suppressed)
http://www.abc.net.au/science/articles/2009/07/29/2639772.htm
(Note the comments by Ian Frazer: he does not want our program changed until they've finished research on the effectiveness of Gardasil - did they get informed consent from young women for testing that carries high risk for no benefit and for this research?
Also, there is a handout for doctors, "Cervical cancer screening" in Australian Doctor July 2006 by Assoc Prof Margaret Davy and Dr Shorne which states that no country in the world has shown a benefit pap testing women under 30. (but other studies have shown it's linked to great harm)
50% of those women who get cervical cancer have had regular pap smears -- hmmm where did I get this #? From the U.S. Cancer society where they state that 50% of women who do NOT have regular tests get cervical cancer.
ReplyDeleteOf all the overwhelming evidence AGAINST pap smears, this is the #1 for me.
Now how likely am I to have unnecessary and damaging followup procedures? Well, with the U.S. model of yearly paps it has been estimated that over 85% WILL have 'a scare' otherwise known as having your cervix burnt, frozen or cut for absolutely NO reason!
So IF you have pap test in the U.S. you have 85% chance of being wrongly diagnosed & treated, and still you have a 50% chance of getting cervical cancer.
IF you DO NOT test - you have ZERO chance of being overtreated/wrongfully harmed -- and yep, still a 50% chance of getting cervical cancer.
Now, how exactly do paps 'save lives'?
Considering that 1000 women have to have yearly paps for 35 years to save ONE woman ... that's right girls - this has been calculated and verified by authorities in cancer testing and research ...
I want to be 'ONE LESS' -- one less woman who mindlessly follows pro-pap sheep who have NOT done the research to support their claims.
If you had 'abnormal cells' removed, these were NOT cancer, they are less than 10% likely to have ever become cancer. How about scaring us with some actual facts?
Just on the above post, there are actually tables that show how likely it is that CIN 1 will progress to CIN 2 etc
ReplyDeleteI know CIN 3 progresses to invasive cervical cancer in 12% of cases and doesn't progress in 88% of cases.
That's 12% of the women who get CIN 3, a small number of women - but don't confuse that with the overall risk of cc, which is still very low.
If we did no screening at all, 0.65% would get cervical cancer. (to be generous, certainly no more than 1%)
I think women need to be careful having treatments, especially for CIN 1 and 2, they should act cautiously - the cervix is there for a reason and we should protect it. Many women my age have some cervical damage, thanks to over-screening and over-treatment - it's very common and many will say they had a "cancer scare" etc...that's impossible when the cancer only affects less than 1% of women, and these women can have issues into the future. I know some women now believe a prolapse is more likely after a cone biopsy and some of these women will have a hysterectomy. If you watch the YouTube video of a cone biopsy, the cervix is hooked and yanked down for treatment quite forcefully - I'm still researching the issue, but it seems likely to me. We also know these women can have issues with low birth weight babies, premature babies, endometriosis, infections etc
Dr Joel Sherman has an interesting forum on medical privacy and in the women's privacy thread there are lots of posts from women who've been harmed by this testing - there was nowhere for this very large number of women to post until recently - no one talks about over-treatment or seems to care.
None of these women understood the risks or how slim the likelihood of benefit or the increased risks with over-screening or early screening - none gave informed consent and some did not consent at all. You might not know GOAS, that women in Canada and the States are often refused the Pill UNTIL they agree to not only ELECTIVE pap testing, but also breast and bi-manual pelvic exams. The last two are not recommended at all in asymptomatic women and are more likely to harm us. This amounts to coercion, but continues to this day. In these cases the woman are providing no consent at all. The risks from an unplanned pregnancy or abortion are much higher than the risk posed by a rare cancer.
I hope that helps explain why I feel so strongly about this issue.
Good luck to you.
http://patientprivacy.blogspot.com.au/2011/09/womens-privacy-concerns-part-7.html
Thank you for the above comments people!
ReplyDeleteAll your responses have been well researched and articulated and I, and other people reading this have more information. The more information we have, the better I say.
Elizabeth, it's scary to think that our GPs don't have our best interests at heart and after having a conversation today with a work colleague on another medical story, it made me wonder whether we should put so much faith in them. I trust my doctor (I wouldn't go to them if I didn't) but the points raised on here make me question the medical fraternity's motives.
The post was mainly written to bring awareness to cervical cancer and document my experience and pap smears; I had no idea people felt so strongly about them! At the end of the day I think I would do it again. The fear that was put into me that it could turn to cancer terrified me, and from what you've all said they may have overreacted, and yes pap smears don't indicate all strains but, referring to my first post, it's the what if.
I think doctors should load women up on the information and statistics you have supplied, but lets remember the Cancer Council of Australia recommend pap smears. I agree women should know ALL the facts before making a decision to go to the next step.
By the sounds of it I have been lucky with my tests that despite them being awkward they haven't been painful or made me bleed. I can see how this would put women off.
At the end of the day we all agree on one thing: being informed is most important, only then should you make a decision.
Thanks for being open-minded enough to actually hear what others have to say - most aren't so willing.
ReplyDeleteBut I want to point out that the biggest problem with the focus on awareness and pushing of pap testing is exactly the FACT that it creates this irrational fear.
As you stated: "The fear that was put into me that it could turn to cancer terrified me, and from what you've all said they may have overreacted, and yes pap smears don't indicate all strains but, referring to my first post, it's the what if."
Fear mongering tactics are being used to push a very very fallible test on women.
No one mentions the hi probability of overtreatment, nor do they list the RISKS of these 'treatments' - there isn't even any attempt to validate a woman's risk BEFORE trying to get her to test.
When you see that having sex recently, any other type of infection, using tampons within 48 hours of the test, douching with anything other than 'plain water' ... all of these things and more can cause an abnormal pap. Also, if you have another pap done too soon -- the damage/irritation from the 1st pap can cause the 2nd to be abnormal.
How can anyone put their faith in such a flawed test?
I find it even more scary that women who have normal paps feel reassured as if that means anything at all. Remember 50% of the women who actually get cervical cancer have had recent & regular paps. So just as an abnormal result has very little real meaning, neither does a normal.
So what is the point of paps?
This has nothing at all to do with 'being put off' by awkward or painful exams or tests - it has to do with being lied to about the risk. It has to do with being bullied by doctors and other women for not testing.
When you get informed about the actual risks and the fallibility of this test, the fear diminishes ... and in its place anger grows at those who would push awareness (read FEAR) of this rare cancer as if it were now or EVER a common problem
Thanks for your consideration of all sides of the topic :)
GOASP - Another great source of information are these supposed "support" groups for cervical cancer "survivors" such as DailyStrength.org and Hystersisters.
ReplyDeleteRead the posts CAREFULLY. These women refer to their abnormals as cancer which is not the truth, and unfortunately their doctors are not correcting them.
Both sites are USA based and like I said, we treat more abnormals than anywhere in the world.
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ReplyDeleteIf the baby wraps a blanket around his head or buries his face in the covers, you'll get there in time to prevent a tragedy.
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