Page 2 | To insist on a repeat smear test?

Chwaraeteg · 07/05/2021 14:13

Yanbu.

I'm in a similar position and I'm not comfortable about it. I don't know why they have made this change to the testing procedure qothout consulting women.

In my case, I was told that I had hpv and abnormal cells a year ago. I eent for a colpsocopy and as the amount of abnormal cells were so low I was told to just get more regular smears. So I went to my smear test apt this month and was told that my sample would only be sent for further testing if active HPV was detected!! I mean, hpv clears on it's own but I already have cell changes - so if the hpv has cleared itself, they aren't going to look at my cells!

stclair · 07/05/2021 14:21

@FelicityBennett knows what she is talking about. And yes to looking at Jo’s trust website. They have a brilliant support line too and will be able to answer your questions.

snackmonster · 07/05/2021 14:32

Sorry but just to point out - your body can get rid of HPV by itself so it isn't odd at all that you weren't tested positive for it.

Also they test for abnormal cells, not cancer.

Original poster

Worried1800 · 07/05/2021 14:46

Thanks for the advice. I’ve found this all very upsetting. The letter I received from the NHS invited me for cervical screening... Not for a HPV test with no guarantee of cervical screening.

For years I’ve relied on the smear test to give me peace of mind that my previous abnormal cells hadn’t returned. To have this test removed without warning was distressing to say the least. I’m now pursuing the possibility of having this done privately. I do feel for the women who can’t afford this route and have effectively been denied cervical screening by the NHS.

OP posts:

Original poster

Worried1800 · 07/05/2021 14:49

most HPV infections go within two years
It’s over 20 years since I was infected with HPV. I was still infected 5 years ago. I doubt it’s gone away now after having been in my body for so many years. It’s most likely dormant, which imo means I should receive cervical screening because I’ve had long term HPV and probably still have it. But the NHS doesn’t agree.

OP posts:

Blablah1234 · 07/05/2021 15:50

@Worried1800 that's not true though. If you test positive for HPV even if you have no abnormal cells you will be screened again sooner and if you have repetitive positive HPV tests you will referred for investigations even if your cytology is negative. Monitoring this way is more effective than just testing cytology and having women not referred because there are no abnormal cells without picking up one whether they have high risk HPV which can lead to cancer. That's why you people could have a negative cytology smear test and then at your next screening find out you have severe cells or even cancer because you had HPV that wasn't being monitored or your changes didn't meet the threshold therefore was classed and negative. Theres a lot of information out there about why HPV screening is more effective. You are very very unlikely to have abnormal cells if you are not detectable for HPV because HPV is what caused the changes.

0gfhty · 07/05/2021 21:04

Ah I see thanks that's helpful, I ended up reading up on it anyway as It got me thinking. Apparently this flare up can happen during menopause so it important to keep going

0gfhty · 07/05/2021 21:08

I think that the op should have the opportunity of more frequent HPV screening at least. I wonder how long between flare ups and abnormal cells appearing. I suppose they account for this with the three or five year gaps, but I would want to know too

LauraAshleyDuvetCover · 07/05/2021 21:14

Are they planning to phase screening out eventually then? Or reduce the frequency?

I had the HPV vaccines before being sexually active, as will everybody younger (and a few older) than me. If boys start having the vaccine too, won't it eventually get to the point that the % of people who test positive for HPV actually be similar to the % of false positives?

Daisylion · 07/05/2021 21:17

So if you've never tested positive for HPV and been married for 20 years is there any point having regular smear tests now?

Why do they insist on collecting cells when it can be painful and distressing for lots of women to just throw them away most of the time if the HPV test is negative? Shouldn't they just do a swab test for HPV and then only if its positive do the whole speculum thing?

Feetupteashot · 07/05/2021 21:21

Don't forget someone saw your cervix and checked you didn't have cancer.

GP can't send another, you would have to go privately. They are not in control of screening

curcurbita · 07/05/2021 21:27

@Worried1800 I can see this is upsetting for you and from what you have said that's understandable but you haven't been denied cervical screening. You have just had a different form of cervical screening. The reasons for this change have been well explained by @FelicityBennett, and this is a system that has been used in other countries and also been trialled in several sites in the UK before the change was made.

Screening tests are not like other medical tests - there are strict protocols because you are testing loads of people who don't have any symptoms, so a repeat smear would not be accepted.

Creamcrackersandricecakes · 07/05/2021 21:37

OP, just to let you know, I recently had a private smear test done and the procedure for testing the sample was EXACTLY the same as the NHS - the sample was first screened for HPV and they didn't look into it any further if it was negative. So if you are thinking of having it done privately it might be an idea to clarify if they will check the cells; you don't want to waste your money.

RagzReturnsRebooted · 07/05/2021 21:39

@Daisylion

So if you've never tested positive for HPV and been married for 20 years is there any point having regular smear tests now?

Why do they insist on collecting cells when it can be painful and distressing for lots of women to just throw them away most of the time if the HPV test is negative? Shouldn't they just do a swab test for HPV and then only if its positive do the whole speculum thing?

That's pretty much the long term plan. I believe it is being trialled already.

RagzReturnsRebooted · 07/05/2021 21:47

@Feetupteashot

Don't forget someone saw your cervix and checked you didn't have cancer.

GP can't send another, you would have to go privately. They are not in control of screening

While sample takers are trained to visually identify abnormalities and which ones may be cancerous (and certainly some cervical cancers are picked up this way), you can't usually see abnormal cells (the precancerous changes that screening looks for).

You are correct that the GP has no control at all over the screening process. If tests are sent too soon, they aren't processed.

Most private tests are also HPV primary now too, probably because they use the same labs. I'm not sure any are doing the old style ones now, I did look into it during my smear training last year and couldn't find anywhere that did.

JumperooSue · 07/05/2021 21:50

@Creamcrackersandricecakes

OP, just to let you know, I recently had a private smear test done and the procedure for testing the sample was EXACTLY the same as the NHS - the sample was first screened for HPV and they didn't look into it any further if it was negative. So if you are thinking of having it done privately it might be an idea to clarify if they will check the cells; you don't want to waste your money.

I was also about to say this. I would have imagined that private smears will have the same protocol, therefore no HPV no further investigation. The only thing you could pay for would be a private colposcopy if you wished to. It sounds scary but reading what others have put above about HPV does feel like it makes more sense to me now as to why they have changed the screening programme.

Talkwhilstyouwalk · 07/05/2021 22:01

I'd probably want a smear test too but worth talking it through with the GP, they might be able to explain the science behind it.

If all else fails, could you pay for a private test. I hope it doesn't come to that! I think most GP surgeries would let you have the test if not having it was really bothering you...

takemetomars · 02/06/2021 18:56

@Worried1800

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?

Nope. You can't demand or insist. You might be able to get someone to look at the cells for a private smear

takemetomars · 02/06/2021 18:57

@HowsYourHeadHun

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

Please. Don't bother GPs with this. They can't do anything about it

takemetomars · 02/06/2021 18:58

@Blablah1234

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)

Great answer

takemetomars · 02/06/2021 19:02

@Toddlerteaplease

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.

You will be getting screening relevant to your history. The intervals have changed