Hi Jane
I'm sorry to hear of your diagnosis and wish you all the best in the future.
Just wanted to mention - if it was an adenocarcinoma of the cervix, a pap test would be unlikely to pick it up - this type of cc is usually diagnosed when the woman is symptomatic, in these cases a "normal" pap test (false negative) can falsely reassure and lead to a delay in diagnosis and treatment.
Whenever we hear of a young woman getting cc, it's usually an adenocarcinoma but they never tell us that a pap test would not have helped or that the young woman may have had a few normal pap tests. (that may have falsely reassured and led to a delay in diagnosis and a poorer prognosis) IMO, it's all carefully engineered to promote women's cancer screening and protect the programs, not women. I don't trust a word coming from the program and it's promoters and protectors because I know the evidence often doesn't support their statements. I consider a lot of their recommendations amount to bad medical advice.
It's that sort of dishonesty and the unethical measures they use to get women screened that means I have no trust in these programs. Giving women bad advice is not only unethical, it's dangerous, it doesn't help us make the best decision.
For example: Only one doctor, as far as I'm aware, Dr Margaret McCartney, made clear that Jade Goody had an adenocarcinoma and that pap tests usually miss this type of cc, instead the program and others used her case to urge young women to screen, resulting in a lot of harm for no benefit.
We've known for decades that pap testing doesn't help women up to age 30 but leads to harm.
We've known for sometime too that women who are HPV-, that's about 95% of women aged 30 to 60, don't benefit from pap tests or "treatments" but we've kept screening and treating...leaving lots with health, psych and obstetric issues.
Here in Australia, it's shocking to know that 77% of women in this program have had something done to their cervix - it's madness. The cervix is there for a reason...and it's heart breaking (and frightening) to know that most of the damage was avoidable.
There's something wrong with the way women's cancer screening was put together and promoted, the whole area needs urgent change and IMO, that starts with addressing outdated attitudes that don't respect women or our legal rights.
We hear about the unscreened woman who got breast or cc, but don't hear about the huge numbers harmed by screening and over-treatments. (some have even died)
IMO, it's to scold and judge the unscreened woman (treating us like naughty children) and to scare other women into screening and to encourage them to also judge that woman. It's completely unacceptable, we're adults and like men, we're entitled to accept or reject screening for any reason - we should screen (if we choose to) in an informed way, not through fear, pressure or judgement.
Here in Australia (up until this year) pap testing was pushed from age 18 or so, VERY early, and 2 yearly until around age 70, so excessive testing, this led to very high (and hidden) levels of over-treatment (and damage) for NO additional benefit to women. It's bad medical advice to recommend such excessive pap testing, but it went on for decades. My own younger sister was harmed by pap testing and an unnecessary and avoidable cone biopsy.
Our new HPV testing program will start at 25, even though there's clear evidence that HPV testing should not happen before age 30, Once again, we'll ignore the evidence
and lots of young women will endure unnecessary and avoidable colposcopies and biopsies.
Our new program calls for 5 yearly invasive HPV testing until age 72, when 5 tests in total would be sufficient, some women might choose to have just one - those HPV- and no longer sexually active or confidently monogamous. (but they won't get the information or the option)
You're right, the HPV test gives you important information, HPV+ and aged 30 to 60 and you have a small risk of cc, HPV- and you're not at risk of cc, the latter group of women, and that's 95% of us aged 30 to 60, could either re-test for HPV every 5 or 10 years (depending on age) or if no longer sexually active or confidently monogamous, forget about further testing.
BUT we don't get the information OR the option - in fact, they block better options to force women into the program.
They claim this is about saving lives, but stand in the way and block access to better and preferable testing options, things like reliable HPV self-testing.
The Dutch HPV self test is reliable and easy to use, women here in Australia could buy it online (if they found out about it, it was never promoted so only for informed women) until recently, it's approval for sale expired shortly before our new HPV program started, I assume in an attempt to force more women into our program. If you want the inferior HPV self test offered by our program, you have to decline the invasive HPV test for 6 years or plead your case to a GP, they won't even trust women to do the test in their own home, the swab must be carried out at the doctor's surgery. (in a private area)
The speculum exam can be intolerable/very painful, especially for older women, and cause a lot of damage - tearing, bruising, soreness, UTIs etc. I find it cruel to push these women into an invasive pap or HPV test, when HPV self testing is readily available and when almost all of these women will be HPV-
I blame the system for some of these rare cases of cc, for giving women misleading and incomplete information, for blocking access to better and more acceptable ways of testing, for early and/or traumatic testing and over-treatment experiences (most were avoidable)
I don't know anyone with cc, but know a lot of women negatively affected by these programs, with continuing health, psych and obstetric issues.
The incidence of cc was falling before screening was even introduced, I think the program has saved a few lives (you can't save large numbers when the cancer was always rare in the developed world) but screening has been done in such a way that heathy women have paid a terrible price - awful levels of over-treatment.
It's poor that in 2018 these program IMO, still choose to control and mislead women, they'd rather we get cc than respect our legal rights, give us real information, respect informed consent, and provide access to decent HPV self-testing options. (even if women have to pay for it or subsidise it)
I don't act on fear, I act on the evidence, I think that's the best way forward but it's still the case in women's cancer screening that we can't trust these programs, we have to do our own research so we can make the best decision.. We might also have to hunt online for HPV self testing or plead our case for HPV self testing with our GP, (if we're informed and know that's an option) that should not be necessary.
So chatting to your GP about pap testing is unlikely to be all that helpful, most will simply recommend the program, some will strongly recommend the program.
Also, many GPs seem to have accepted the spin put out by these programs as the evidence. I think the best approach is to go in armed with the evidence and if you want self testing, stand firm.
Kind regards
Elizabeth
