To not understand smear tests.

[BooksandCats123]

I’m 43 and have never missed a smear test.
When I was 30 I had a cin 4 result. I had lots of appointments and was told by an oncologist that looking at my result he should be seeing a tumor of some sort but couldn’t.
I had all sorts of scams including an mri. It was decided that I’d have LLETZ procedure to remove cells and a smear test every 12 weeks then 6 months ect.
Over the years I’ve had the LLETZ procedure two more times.
I had a smear test recently and was told that they no longer look at cell changes unless a certain strain of HPV is detected. My result was negative I got my GP to check my notes and they say I was also HPV negative when I had all the issues 13 years ago.
When I raised concerns about this my doctor said that the HPV test 13 years ago must of been wrong, I wouldn’t have cell Changes without being positive and that there is no need to worry.
But I am, if 3-11% of Cervical cancer cases are from women who are negative (got this percentage from Google) how is it picked up on?
TMI but I had sex earlier with my DH and bled afterwards, I am waiting for a gynaecologist appointment (should be soon) because of pain during sex but the bleeding is a new thing.
When I had a scan in the summer it was suggested I might have Endometriosis and like I said the appointment for to confirm that is hopefully soon.
But bleeding and pain is a symptom of cervical cancer, my aunt had it and sadly didn’t survive.
I feel like my life is being put at risk here. Have I got it wrong or does this way of testing worry other women, where could I get a smear that looks at cell changes?

Kindly where are you getting this 11% from? Except for AI?

I understand from your history you're anxious but you will scare yourself and others by overestimating the risk of HPV testing. Studies of the rates of HPV negative cancers have shown they're even less common than previously noted because often the diagnosis was wrong in that their cancer wasn't cervical in the first place so you'll find very few reputable data sources that will place HPV negative cancers anywhere near as common as 11% especially in the UK. Also, unless you have any of the risk factors for the very rare non HPV related cancers (DES exposure or immonocomprimised) for example, your risk is very low. Were you treated in the UK before or are you comparing UK screening to elsewhere?

You can pay to have a private smear test or course but the NHS process is based on evidence that wouldn't put more women at risk than the previous screening protocol and you can read through the studies behind.tjr rationale on the cervical screening website which might help your anxiety..

Wishing you all the best at your Gynae appt but I do worry about the increasing amount of misinformation about smear tests on here lately and I hate to think of anyone reading who has a HPV negative test thinking there's anywhere as high as 11% risk that they're going to be missed for a cancer.

That is absolutely not correct.

Having a wart as a kid does not mean you're immune to HPV. Just because a viral wart clears up, that doesn't mean your body has rid itself of a virus. It can just mean the virus is dormant.

Also, there are multiple strains of HPV. The one that caused a wart on your hand isn't necessarily the same strain that's associated with cancer. Go and book a smear test.

Lots of misinformation on this thread.

Most research agrees that 99.7% of cervical cancers are caused by HR-HPV. This is high risk HPV strains, which are totally different to other strains of HPV (and there are hundreds) which can cause simple warts, verrucas, skin tags etc.

There are not 11% of cervical cancers being missed by primary HPV screening.

Lower grade dyskaryosis can occur without HR-HPV (rarely) but these are not cancers and are very unlikely to ever become cancerous.

The poster who thinks she doesn’t need a smear because she’s had warts as a child is dangerously mistaken.

@BooksandCats123 you don’t need a smear now, as that’s a screening tool not a diagnostic procedure. You need review at colposcopy. Oh and don’t ask the GP about private smears as they are unlikely to recommend anyone.

I refer many women with asymptomatic polyps than can become cancerous.

I fear the same OP. I also had cell changes (and LLETZ treatment) whilst testing negative for HPV and have exactly the same worries. I think for people in these situations they should test for both HPV and cell changes.

To be honest if my GP had it explained it in the way you have I might not have been worried enough to sit at home googling statistics.
He told me that after checking my notes I was confirmed as being HPV Negative when I had all of the cell changes/procedures years ago but because that is rare it was probably a mistake.
I know people that have died, really quickly after a cancer diagnosis so when you go for a smear test you want to be told.. 100% you are covered, nothing to worry about.
The appointment I’m waiting on for suspected Endometriosis probably will explain my current issues but it’s confusing when you’re also being told.. This is probably because of peri menopause or it’s because of contraception.. There’s so many symptoms with separate issues that mimic each other. Unless you’re a gynaecologist it’s hard to understand what’s what.

There seems to be a lot of knowledge on this thread- does anyone know the reason why they continue with the invasive test, when HPV testing can be done with a swab?

The 99.7% predates HPV vaccination, though. In countries with a long standing vaccination campaign (such as Australia) the percentage is smaller and dropping. We haven't had it as long but most of the body of research in the UK predates us having vaccination in place. While the incidents of HPV-independent may not increase, the % has and is decreasing.

OP - you may have to go private. I had an HPV-independent Adenocarcinoma In Situ removed by the NHS. The test of cure was an HPV test. I've been on 6 months recall for nearly 5 years. They take extra swabs every time because the type of growth is aggressive and easy to miss (prone to skip lesions so clear margins aren't as reassuring etc). They're binned every time without testing as I'm (still) hr-HPV negative. The moment I'm discharged (likely after my next colposcopy) and haven't got someone looking at my cervix every 6 months I'll be going private for full cytology.

I asked the same questions as you until the consultant wrote to the lab asking them to test cytology regardless of HPV result. They refused due to HPV primary testing.

I believe it's because if it's positive they can perform the cytology report without recall. Does make a certain degree of sense. Also, it doesn't hurt to have someone look at your cervix. I was sent to colposcopy because the nurse that did my smear thought something didn't 'look' right - not because I was hr-HPV positive

@Moltenpink I perform cervical screening as part of my role. Part of our training is to recognise visual signs which are suspicious of cervical cancer. So you not only have the sample taken but you also have someone who is qualified to do a basic assessment actually visibly checking your cervix.
another thing to consider is the fact that once HPV has persisted for a period long enough to cause cancerous changes then a swab test could actually come back negative as by the time cell changes have occurred and become actually cancerous (usually 10yrs plus so typically someone who doesn’t
attend for regular screening) then the virus has actually become undetectable again.
Hope that makes sense?

I agree there’s been a lot of misinformation about smears recently and its worrying that 17yrs after Jade Goody’s death that initial increase in smears seems to have long dropped off. Before posting worrying stats online you really do need to check your evidence as is scare mongering. If having a private smear makes you feel better then pay for them as peace of mind is invaluable.

I agree, that I think the new way of doing smears is wrong. I work with someone like you had cell changes when younger and she can't understand why they don't look at cell changes for her either.

I'm not sure I can be bothered to go for smear tests anymore with the current setup. As I've always been HPV negative and have had the same partner for a long time. So what is the point of them anymore?

I have worried for some time that this is a way of them phasing them out altogether. As now children are vaccinated against HPV if you aren't going to look at cell changes then why bother?

A lot of you don’t seem to realise that having cell changes does not mean they will become cancerous. The whole point of identifying lingering HR-HPV and early cell changes is to allow early intervention to prevent them becoming precancerous.

We are virtually all exposed to HPV in our younger years. Our immune system will usually clear it before it causes cell changes. If it lingers, we can detect it on screening and then check the cells. If they have changed then they can be monitored or reviewed.

https://www.cancerresearchuk.org/about-cancer/cervical-cancer/abnormal-cervical-cells/what-are-abnormal-cervical-cells

Because its a big boat to turn around. Especially as they have been pushing smear tests for years. But moves are in hand to stop them and they will be stopped as routine in the next few years.

If you’re symptomatic you don’t need a smear you need a diagnostic test. In the same way if you had a breast lump you wouldn’t ask for a mammogram.

So you can see the cervix when doing the smear test or you are just asking the right questions?
If you can answer as a professional that would be helpful I think.
I can’t be the only one who’s confused and I really want to understand this.
I’ll give you my two examples pre the test and after the test change.
Scenario one 2012)
Im 30 and in a steady relationship I am chopping and changing contraception regularly to find one that works best for me.
Every time I have sex with my boyfriend there is a lot of bleeding/pain.
I assume the bleeding is because of the contraception issues but luckily a few months in I attended my smear appointment.
I have a LLETZ procedure offered more regular smears and according to my GP am testing HPV Negative throughout.
I had a couple of more colposcopy scans until things are back to normal.
Smears finally start coming back clear.

Scenario 2) I’m 43 and up to date on my smear tests.
I have been experiencing painful sex and bleeding during sex and in between periods.
I have had a scan and have suspected Endometriosis, waiting for my gyne appointment.
I have also just started HRT and it’s been explained that the weird bleeding may be caused by hormone changes or Endo. I need to wait for the appointment with the Gyne.
Now let’s say for the examples given i was having my current issues in 2012… I would still be assuming it was because of hormone changes because of contraception and even if I were to be offered today’s HPV only test instead of a real smear the fact that I tested negative back then and I have again recently my symptoms would be put down to peri menopause/Endo ect for god knows how long.
Is that right?
That’s the bit I’m not getting, bleeding during sex and pain ect are some symptoms of cervical cancer.
They are also symptoms of peri menopause or Endo. The recent newer testing has me testing negative for HPV. In
this
scenario it could take ages before someone suggests.. We should look at her cervical cells?
Also if HPV can show as negative when it’s already done its damage what’s the point in the HPV test?
Is that correct, you can have dormant HPV Causing cancerous cells yet if you test negative nobody is going to know until they’ve ruled out Hormone/Endo/Menopause issues.
Isn’t that risky considering the waiting lists to get diagnosed with the above can drag on for so long.
I’m 6 months in to my waiting list appointment to see a gynaecologist, isn’t that dangerous?

This is the sort of reason I'm considering going for a visual check and declining the HPV swab itself. I think the look to check for changes is important but, at the age of 50+, not too worried about getting HPV at this stage. Maybe I'm wrong but I'm questioning what the change in screening means for me as an individual and what I will do.

So if I've only had one sexual contact, they've only had one sexual contact, and I've got to a bit over 50 without HPV (did have the last test which was negative), then do I really have to worry about HPV at this stage (assuming no cheating by partner)?

Jade had adenocarcinoma a particularly aggressive form of cervical cancer that mainly affects younger women and is rarely picked up by a smear test. Jade also had regular smears. She had her first lot of cells Lasered at just 16 years of age for some reason.

No one can assume no cheating and you also can't be sure you don't have dormant HPV that can become active again when your immune system is low. HPV is extremely common, there's hundreds of strains either you or your partner could have come into contact with

I agree, OP. I, too find the new approach concerning and my GP has not been able to put my mind at rest. I know I have HPV (CIN 3 and a test in my 20s for HPV). Decades on and my test says I do not have HPV - but I do. If it is wrong about that, should I be concerned? (I’d like to think perhaps the results mean the virus is dormant and, while dormant, cellular change is unlikely - but unfortunately that’s not what results actually said.)

Why would you think you still have HPV decades later if your cervical sample shows no evidence of HR-HPV?

Your immune system is likely to have done it's job and cleared it - HPV is a virus like any other and if your immune system does what it's designed to do it will have cleared the virus.

@Spittykityy Jade sadly did have a smear test but failed to respond to recalls and follow ups I believe. I read her autobiography and remember her admitting she stuck her head in the sand and didn't engage with her treatment plan. Tragically sad and possibly avoidable.

It's not like you get one test and it says "no HPV" and you never get a smear test again for the rest of your life. The virus can lay dormant for I have heard 20 years - so you get your cervical smears at the recommended interval, even if you got one, two, three HPV negative results. That's what I understand.

@Tideturn when HPV lies dormant you’ll test negative for it. If it activates again, that’s when the risks increase of it causing cell changes, which is why the new test only has cytology being carried out for those who test positive.

I’m in the same position as OP. Severe cell changes but never tested positive for HPV. Everyone tells me I must have it/have had it, but they can’t prove that as I have never tested positive and this does cause me some moderate health anxiety. I did research private smears but I could only find tests that do cytology only when testing HPV positive (same as NHS testing). If anyone has found a private test for cytology, please do pass on the details. I did attend my latest nhs smear and tested HPV negative, but the health anxiety remains. I would happily pay for peace of mind.

Why? Because you never clear the virus; it’s for life. But I understand now from other posters that if it is dormant the risk of cell change disappears. Thank you all.