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AIBU?

To insist on a repeat smear test?

46 replies

Worried1800 · 07/05/2021 11:30

Name changed for this.

I recently had a smear test. Previously they used to test for cervical cancer. Now they test for HPV and if you don’t have it they don’t test for cervical cancer. My letter says as I don’t have HPV they won’t be testing for cancer.

I’m not happy with this at all - I want the cancer test. I’ve had surgery to remove abnormal cells in the past and I want a negative cancer test to put my mind at ease. I’m not satisfied to just assume I don’t have cancer because I don’t have HPV.

Secondly, I caught HPV from being attacked over 20 years ago. I passed it on to a partner 5 years ago so I clearly still had it. I find it very odd that it’s apparently disappeared now and I’m worried the test result is wrong.

What would you do? Am I entitled to insist on having the actual cancer screening and not just the HPV test?

OP posts:
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flashylamp · 07/05/2021 11:31

I don't think you can insist on anything but perhaps talk it through with your GP

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DontBiteTheBoobThatFeedsYou · 07/05/2021 11:34

You can insist all you want but unfortunately it will be a flag no.

The alternative would be to go private for the test.
That's what I would do.

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Floralnomad · 07/05/2021 11:36

That’s the norm now , I think unless you have actual symptoms of something that you will not change their policy and private would be your option .

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HowsYourHeadHun · 07/05/2021 11:44

I think it's wrong how they test now and I'd speak to your GP about your concerns.

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Blablah1234 · 07/05/2021 12:12

You can insist but they will refuse/ if they give in and do it the lab will just reject it and them reprimand your go for taking a smear test outside of protocol so you are wasting your time. They screen for HPV because it causes abnormal cells which can lead to cancer. If you are negative for HPV you are very very very unlikely to have abnormal cells ( which is what is screened for even previously, not cancer. A smear isn't advanced enough to confirm cancer)

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ijustcanty · 07/05/2021 12:25

You don't have the right to demand it no. You can pay privately for investigations I am sure.

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MarshmallowAra · 07/05/2021 12:32

I'd try to use your previous abnormal cell detection and removal as a way to ask for a psp smear.

I think there are a small number of cervical cancers caused not by HPV and you could say you're concerned about that.

If you get a sympathetic gp you might get a pap.

Not sure what you mean by having HPV five years ago since I'm not sure the test was available then - do you mean you had warts or (?) The wart causing strain is not the high risk strain.

However it dies seem likely you had a high risk strain previously as you had abnormal cells.

I understand strains can be cleared by body over time - and I'm not sure but may go dormant etc.

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MarshmallowAra · 07/05/2021 12:33

All you can do is ask and emphasis your concern due to previous treatment needed and hope they're sympathetic.

If not, may have to pay for one if you can afford it.

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iklboo · 07/05/2021 12:36

I'm afraid you can't insist but I'd definitely speak to your GP given your past medical history to see if they can repeat / carry out the cancerous cells test.

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SuddenArborealStop · 07/05/2021 12:36

The HPV test was definitely available 5 years ago , I actually did one by post to see if it was worth my while getting the HPV vaccine.

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megletthesecond · 07/05/2021 12:36

Yanbu.
It's impossible to tell what's going on without a proper test. I've had the joys of CIN 3 (twice) and a hysterectomy. The worry between check ups was off the scale.

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ForgotAboutThis · 07/05/2021 12:37

It's vanishingly rare to have abnormal cells without having HPV. Hence the way the test works. I would ask to speak to the practice nurse because it is clear they have not explained things well to you. As I understand it HPV doesn't go away but can be inactive, and when inactive wont show up on a smear and you won't have abnormal cells at that time.

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eeyore228 · 07/05/2021 12:38

@Worried1800 my understanding of HPV is that whilst it can last, the body usually clears it after 2 years. So if you have had it, it doesn't mean it would definitely show in your system.

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KFleming · 07/05/2021 12:41

I think HPV can go away. Both me and my best friend had a positive HPV result following a smear, both tested negative at the next smear test. At the bottom of this page it says that most HPV infections go within two years.

www.nhs.uk/conditions/human-papilloma-virus-hpv/

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alittlequinnie · 07/05/2021 12:47

I too had abnormal smears a few years ago.

I had my latest smear test about 18 months ago and I got the letter to say "you tested negative for HPV so we discarded your test".

It seems SUCH a strange way to go about it? I too tested positive for HPV and didn't realise that it can "go away". I thought it was with me for life.

Funny enough I went the to GP a week or so ago and she INSISTED I was due for my smear - I told her it was less than 18 months but she said she would do one anyway.

Got a call yesterday to say the lab rejected my test as it was not due.

So there's a GP insisting on doing one and the lab say "no thanks"!

I understand your worry OP - I think if you've had abnormal in the past you just worry so much that they will mutate again and nobody will know!

Surely there's an easier way to test for HPV than doing a smear too -the one the GP insisted on doing was pretty painful and it made me bleed - frustrating for it to then be rejected!

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FelicityBennett · 07/05/2021 12:48

Your GP won’t be able to order cytology as this is a screening test and this has now switched to primary HPV testing
A repeat smear will be rejected.
The reason for the change is that research has shown that primary HPV testing is more a more sensitive test for detecting changes which may lead to CIN than normal cytology which has a lower detection rate and higher false negative rate hence the switch.
The evidence suggests that in the absence of HPV it is unlikely that any cervical changes progress to cancer
I understand your concerns and suggest you have a word with either the nurse or GP but they will not be able to order cytology
This would only be available privately.

Jo’s trust has a really good page on this and is worth looking at.

All cervical smears are only screening test and hence if you have any symptoms eg bleeding after sex, pain, irregular bleeding, persistent discharge need to be investigated and not just a smear

www.jostrust.org.uk/information/cervical-screening/primary-hpv-testing

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0gfhty · 07/05/2021 12:56

So I have a question. What would be the point of a smear test if a woman hasn't had any sexual activity since her last smear (which was in fact a HPV screen)?

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MarshmallowAra · 07/05/2021 13:31

@SuddenArborealStop

The HPV test was definitely available 5 years ago , I actually did one by post to see if it was worth my while getting the HPV vaccine.

I meant I didn't think they were doing then in the NHS.
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poshme · 07/05/2021 13:34

@0gfhty

So I have a question. What would be the point of a smear test if a woman hasn't had any sexual activity since her last smear (which was in fact a HPV screen)?

Yea I'd like to know this.
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Cactuslockdown · 07/05/2021 13:36

@0gfhty

So I have a question. What would be the point of a smear test if a woman hasn't had any sexual activity since her last smear (which was in fact a HPV screen)?

Yes good question!
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Toddlerteaplease · 07/05/2021 13:37

You won't get one. I was supposed to be having annual smear tests. As I have had treatment that puts me at higher risk of cervical cancer. And I can't get a proper smear.

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MatildaTheCat · 07/05/2021 13:45

Here is the explanation as to why this method is considered safer and more accurate.

It can be really difficult to accept changes to methods in medical ( and other areas) models. This has been extensively researched to offer better accuracy though.

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takemetomars · 07/05/2021 13:55

@0gfhty

So I have a question. What would be the point of a smear test if a woman hasn't had any sexual activity since her last smear (which was in fact a HPV screen)?

Because HPV infection can lie dormant
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TubeOfSmarties · 07/05/2021 14:11

I think what you really need is to have someone talk to you properly about it all. I think if you understood it all a bit better that would help a lot

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Blablah1234 · 07/05/2021 14:12

@0gfhty because the virus may have been dormant and can "flare up" again depending on your immune system. A smear test is also never 100% accurate so even if you're previous test was negative it doesn't mean there wasn't actually viral or low grade changes that were perhaps not picked up

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