Hi, I am in New Zealand and we have an opt off programme. Following an ammendment to the 1956 health act in 2004 ,the NCSP can access the medical records of any woman on the cervical screening register without her consent. If a woman withdraws from the register they can only get at your notes if you develop cervical cancer.Both myself and my daughter have withdrawn from the programme.I have also had my name removed from the NHS screening programme, citing lack of informed consent and I demanded my complete screening history and got it wiped from their system.
Hi Jackie, any woman can choose whether or not to screen. Approximately 29% of young women will produce an abnormal test as they deal with transient HPV infections which clear in about 90% of women. LLETZ treatment of abnormal cells,which rarely go on to become cancerous, can cause late term miscarriage, problems with cervical dilatation in labour and incompetent cervices. None of this is ever explained before you step on the cervical screening pathway.Do your own research.
Hi, I'm following this with interest as its opened me eyes to aspects of the smear test I had never even thought about. Does anyone know if the alternative form of testing has been/will be publicised to women in the UK at all? We need this to be more well known!
On a slight tangent, does anyone have any views or info on the cervical cancer vaccine given to girls at 13 y? If this is effective will we need testing at all in the future? What are the side effects? I'm really doubtful I will let my daughter have this vaccine, but need to know more. Thanks in advance.
Hi PharmaSarah.I personally chose not to have my girls vaccinated. My concerns are, it has not been proven to prevent cervical cancer as that was not the research endpoint. Cervical cancer is uncommon and actually always has been, not that we have been told that. We always get the worldwide stats and told that it is the most common cancer in women under 35; not true according to Angela Raffle.Any protection afforded by the vaccine may have worn off by the time a woman reaches her twenties, who knows. Gardasil ony protects against subtypes 6, 11,16 and 18.What about all the other subtypes.Will the natural order be upset?There have been adverse events.When Merk tested Gardasil for adverse advents, they did not test it against an inert placebo but used the aluminum adjuvent in the vaccine. Far too many issues for me to inject this into my girls, you may decide otherwise. It is important that you make an informed decision that you are comfortable with. All the best, it's not easy trying to get unbiased info from the authorities.
I'm not sure about the UK Sarah, but I'd google Delphi Screener and the manufacturer's details should appear. I know Australian women have ordered the device online and posted their sample back to Singapore so you should be able to do the same thing - order it from head office of the same company in The Netherlands.
I doubt they'll offer HPV self testing any time soon, even in countries that have this option, they only offer it to women who refuse the invasive test or use the test to try and persuade women who don't want to screen, they never seem to take NO for an answer.
Australian women can now request the device (and pay for it) through their GP, but it's being kept very quiet, it's only for informed women.
Tampap is available in the UK, I noticed they're telling UK women that if the test shows they're HPV- they should still have a smear test, not true, if you're HPV- and that's MOST of us, you cannot benefit from smear testing. (but can be harmed by false positives, excess biopsies and over-treatment)
I haven't had the time to do a lot of research into Gardasil, but I can tell you something, I wouldn't believe a word coming from official sources. I've listened to the medical professions and these programs mislead women for decades, so I don't trust them. I'd urge you to do your own research and make an informed decision. I don't have a daughter, but if I did, I'd take my time and do thorough research, cervical cancer is a fairly rare cancer, I wouldn't be prepared to accept much risk at all to cover a rare event. (some girls have had a bad reaction to the vaccine, that has caused chronic fatigue type symptoms that have persisted for several years, many have been unable to go to school - I saw a documentary about some Danish girls in this position a couple of months ago)
I don't have smear tests at all, rejected them decades ago, I've never had one, it was one of the best healthcare decisions I've ever made. it's been horrible seeing so many women being harmed by this testing and the ugly aftermath, almost all of that damage was avoidable with evidence based screening and some respect for consent and informed consent. It really is an outrage the way these program have treated women.
Hope this information is helpful, I'll send you a link to that documentary.
Thank you so much for your reply, I will do some more research. Definitely against the vaccine as my gut reaction, but we'll have to see.
Thanks so much for replying. Will watch the documentary.
Lauern, I understand you very well. I also avoid Pap smears, because my last one was very painful, I was even bleeding. Now I want to do HPV test by urine, but I was told (in the clinic) that this test cannot determine the number of abnormal cells if the result is positive.
Now i don't know what to do.
The usual procedure ena under an evidence backed program, (if you want to test that is) is: do the HPV self test, if it's HPV+ then you'd be offered a pap/smear test. MOST women are HPV- and therefore are not at risk of cc and cannot benefit from a pap/smear test. If you're one of the roughly 5% aged 30 to 60 who are HPV+, then you'll be offered a pap/smear test.
I don't know your age, but you should not do HPV testing until you're 30. (under an evidence backed program there is no smear testing before age 30 either, it doesn't help, but leads to a LOT of excess biopsies and over-treatment)
So doing the test could lead to a dilemma if you don't want to have a pap test/smear test - some women might worry if they don't have a pap test and test HPV+
It's important to think about these tests and where they can lead BEFORE you do them. Best of luck...
Thabks Eliz52. I am 58 years old, and my last Pap was so painful and traumatic, that I decided not to have them in future.
Do you have any advise concerning HPV test by urine?
Hi Ena
At 58 you're likely to be HPV-...under an evidence based program you'd be offered HPV primary testing or HPV self testing and if your result was HPV- you'd be sent away, no more testing. (HPV and smear testing stops at 60 in the Netherlands and Finland, evidence backed programs)
The urine test is not available as far as I know here in Australia, the women I know who've used a self testing device ordered it from Delphi Bioscience in Singapore. (Delphi Screener) If you're in the UK you could use Tampap or contact Delphi Bioscience in The Netherlands, their head office. If they can post the device from Singapore to Australia, they should be able to post it from Amsterdam to the UK.
Putting post menopausal women through smear testing is just cruel, almost all are HPV- and cannot benefit from the test. False positives are also, more likely in this age group. Yet they continue to block HPV self testing options or to release HPV- women, who are no longer sexually active or confidently monogamous, from further testing.
Hi eliz and thanks again for your reply. Here in Thailand, where I live now, urine test is avialabe as well as Delphi Screener. As for self test kit, I read that when taking a sample, it is important to get it as high as possible in the vagina close to the cervix, so I am frightened that it will be also painful. My pain treshlod is very low. So I would go for urine test. But I am a little bit confused by informations about that kind of tests.
Oh, sorry, didn't realize you're in Thailand.
The Delphi Screener is not painful (so I'm told) one of my colleagues nearly passed out from the pain having her last pap test, she refused to have any more. She had no trouble using the Screener. (she was HPV-)
Now that she knows the evidence, she understands the pap testing was unnecessary, she was put through hell for years for nothing, at least she's informed now and can stand firm in the consult room.
I know some older women are given creams etc. to make the pap test less painful, some are even sedated, it's pure insanity when the woman can self test for HPV easily and reliably and in MOST cases the result will be HPV-
So I'd give the Screener a go, if you can't manage it, you could then try the urine test.
Thank you so much Eliz.
Hi Lauren,
I would not avoid your Smear test as I have recently had one and it has come back with being on the Borderline of Cervical Cancer and HPV which has been caused by having an abnormal smer test this is with having regular Smear tests amd have to undergo treatment, so please get one done on a regular basis.
Hope you understand why I am saying this to you I am not judging you I am simply advising you.
Couldn't help reading some of these comments with an open mouth. Attitudes to smear tests seem to be very negative these days. I'm nearly 50, I've never thought having to have a 5 minute procedure every few years particularly bothersome or inconvenient, certainly no more uncomfortable or humiliating than some of the procedures I've had with having children or being treated for CIN lesions. It has always given me a lot of reassurance to know, most of the time, everything has been normal. Not suggesting anyone here is wrong, I'm just very surprised.
What a growing number of informed women have a problem with is that women in the UK are not given proper information before this test, therefore it is not informed consent. We are not told about the risks of false positives leading to over treatment (see useful info from Eliz52 here) and the damage this can do. We are not told of the types of cervical cancer this test does NOT pick up. We are told it will reassure us to have it, so much so, that we all believe this, as you have said you do too. This is nonsense. Men are told about the risks and benefits of a PSA test (prostate cancer screening) but this courtesy is not extended to ladies' cancer screening tests - ludicrous. But then our GPs are incentivised/paid to get us to have the smear test, aren't they. Not so with the PSA, they're very quick to put men off having it, because they know it can be unreliable. See Dr Margaret Mcartney's online blog so you can get the full picture and make an informed decision yourself. If, after being informed of the risks and benefits of any screening test, a lady still decides to go ahead with it, then that's up to her, at least it'll be an informed decision, rather than the situation we have now, where the vast majority of us are NOT giving informed consent.
Exactly PharmaSarah, and I'd say that many women are not consenting at all, they've been coerced, pressured or misled into testing.
Interesting too that so many women have "treatment" for CIN when the cancer itself is fairly rare, here in Australia the lifetime risk of referral for colposcopy and biopsy is a huge 77%, while the lifetime risk of cc is 0.65% - we also, "treat" more than 10 times the number of women than a country like Finland. Almost all of these procedures were avoidable if we'd followed the evidence and respected informed consent.
VERY few women benefit from smears, VERY few AND we can identify the fairly small number of women who might benefit from smears, but instead they choose to drag all or most women into testing.
Our program actually maximizes risk for no additional benefit to women, Finland has offered 7 smear tests since the 1960s, here women are still being told they must have 26 (or even more) smear tests...BAD medical advice.
It's an absolute disgrace...heads should roll.
Thankyou for your response. I see what you're saying and you have an interesting point of view. Pls appreciate I come from a generation that didn't know what HPV was until recently and I do feel that a strong anti screening reaction is a little premature until the benefits of HPV vaccination are fully known and understood. Pap screening is something I have never felt pressured to do. I also find it interesting that Dutch healthcare has been mentioned here; I live in the Netherlands and had a bit of a fight with my doctor to get a pap test (I'm v cautious now after previous treatment. A choice, as you say.)
My anti screening stance has nothing to do with the hpv vaccine. I feel I never gave informed consent prior to stepping onto the screening pathway.No one ever told me the true incidence of Ca cervix or that I could be putting my future fertility at risk had I had rashers sliced off my cervix for CIN lesions that would likely regress on their own. I was lucky,never being referred for colposcopy, my sister was not.The lack of informed consent is my issue,it is disgraceful that it still does not happen.BTW the hpv vaccine is under investigation because young women are presenting with POTS and CRPS following vaccination.