To not know they did this at a smear test

[ILoveBray]

Came back from mine today, and they are now adding in HPV screening. Not sure when this was added, but I'm pretty sure I didn't have it 3 years ago.

Think this is such a good idea, as if you have HPV you have a higher chance of getting cervical cancer.

Not really an AIBU, more a reminder to book in for your screening if it's been more than 3 years

This post was edited by MNHQ at OP's request

Okay. GP here. I will try to explain.

HPV is a virus with many sub-types. Some of these are high-risk for developing cervical cancer (hrHPV) and those are the ones we’re looking for (now) at a smear test.

The smear test used to involve just cytology. Some of you will remember the old wooden spatula smear tests: we took a sample, we literally smeared it on the slide and sent it to the lab who looked at the cells under a microscope. Then we moved to liquid cytology, with a brush, and we put the cells in liquid and sent it to the lab, who looked at the cells under a microscope.

A few years ago hrHPV screening was introduced as a supplementary test to the cytology: if you had abnormal cells seen under a microscope then additional testing was done to check whether there was also hrHPV present. It is the persistence of hrHPV virus in the cells that puts you at higher risk of developing cervical cancer. So now you were referred on to colposcopy (direct inspection of the cervix +/- biopsies/treatment etc) only if you had hrHPV with an abnormal smear. This type of testing is still happening for most of us.

But. In the next year or so (and in some pilot sites already) we are moving towards hrHPV screening as the first-line test. So now it’s the other way round. Your sample will be taken in the same way but will be tested initially for hrHPV and only if that is present will your smear actually be looked at. This is better because it’s quicker and it’s more accurate. It focuses resources in the right place means tha

lozster - a paper I read suggested that self-sampling needed some coaching to get a reasonable sample for assessment.
Trying to find a way to risk assess yourself without a speculum exam could be a way round it, however discussion of the pros/cons with a medical professional would be sensible to explore things such as

• would self sampling definitely get cells from the right area
• what would you want to do next if the sample tests high risk HPV+

I’m aware I am one anecdotal experience, but I’m posting for balance anyway;

I had CIN3 cells and was negative for HPV. At colposcopy the area of change was visible to the eye before the indicators were even used.

Cross posted ThatsNotMyToddler :-)

I work in a screening lab. Some labs have also started doing Primary HPV as mitigation because massive backlogs of tests had built up due to the loss of staff. I believe turnaround times have started to improve but the screening awareness campaigns have encouraged women to go for testing, so there's been a big increase in tests to do. A good thing but might take a bit longer to process.

FrogLegs
Unfortunately no test is 100% accurate, as PurpleDaises wrote earlier. No one wants anyone to have an abnormality missed but it does happen with the current test as well.

Bela

Yes,
I think I have read that self sampling is tricky but the clinical trial cited by cancer research says it was better? I wonder if there are different protocols? I can imagine cervix is tricky to say the least but the vaginal wall wouldn’t be and I think this is where the study cited by cancer research took the sample from.

I think many women would be more willing to have a smear test if they knew they were testing positive for hpv. In my case if I tested positive I would risk another tear or be more willing to have surgery to resolve the issues that make the smear not possible at the moment. It is a risk benefit trade off.

7pip
I wasn't saying that you had genital warts! or assuming that anyone has on this board. Warts are a form of the HPV virus also. So I was just pointing out if someone has had genital warts they aren't to think that they will get cervical cancer.

https://en.m.wikipedia.org/wiki/Humanpapillomaviruss_infection
Interesting read about the HPV virus

lozster - self sampling hasn't been brought in for NHS screening as yet, they will probably need to do more trials first.
In the meantime, I suggest you talk to a medical professional about whether it's something that would be of benefit for you.

Sorry folks - my massive post from last night vanished so I thought I’d lost it and was too tired to type it again!

To pick up where I left off. They’re now doing hrHPV screening as the primary test and this will be rolled out nationally in the next year or so. This should be a good thing. There has been lots of research done to ensure that it is a better way of testing than the old way.

The links posted above show the recalls. As I said before it is the persistence of hrHPV that puts you at higher risk. So if you have hrHPV but your cells look normal that’s (probably) okay but you will be recalled sooner. If you have two tests like that then on the third you will be sent for colposcopy even with normal cytology so we can see what’s going on. Many women will clear even hrHPV via their immune system without it causing difficulty.

There are occasional cervical cancers that are different to the ones tested for by a smear, but they won’t be picked up by the current screening programme either. That’s why even with a negative smear we are always told to go back if we develop abnormal bleeding etc. We don’t then need a smear (which are for asymptomatic women with a therefore low background risk of cancer) we need different investigation.

7pip you sounds terribly worried and like you need to talk to your GP about what’s going on, but I can assure you that they haven’t referred you for a scan because they think you have cervical cancer - if they thought that you’d have a fast-track gynae referral. I hope they find and answer for you soon.

Cervical screening is a massive success - to the extent that the biggest risk factor now for getting cervical cancer is never having had a smear. I don’t say that to make anyone feel bad about not being able to attend, but just to say what a great thing this screening programme is. ‘The NHS’ (as if that were an homogenous thing rather than made up of the people who work for it) is not embroiled in a conspiracy against women and neither is the government. I am confident that work continues to find a more acceptable/less invasive test that gives as good a screening test as the current system. But all these things need to be assessed over time - you can’t just introduce something without adequate trials and head-to-head comparison.

The final thing to say is that everyone needs to continue having smears at the moment / even those just coming up to 25 who have had the vaccine. The vaccine does not protect against all strains of hrHPV and so we cannot at this stage end screening even for those who have been vaccinated. This is really important.

Great posts ThatsNotMyToddler, very informative.

I understand that the update of screening is down - hence all the awareness campaigns. Can someone please explain that if the screening rates are going down, why aren’t we seeing a jump in mortality rates? Or am I mis-reading the figures?

No one?

Maybe too early to tell. It can take several years from mildly abnormal cells to become 'cancerous'. FWIW I've done loads of smears today, people ringing for appointments, so maybe the recent campaign is having an effect.

Not sure anyone reads my replies but I'll give it a go!
Panama it's the incidence and stage of reported cervical cancer that would show the coverage issues more obviously than mortality per se.
I also agree with cptartapp that as it's the younger cohort who are predominantly not attending that it will take about 10 years to see cervical cancers in 25 year olds who aren't attending now. As cervical cancer is generally a slow growing disease it does give more chances for it to be found (either screening or symptomatically) before it's untreatable. I haven't looked at the mortality figures recently so I'm going on what you've said.
Cancer UK will have some data though.

BellaLug0si , ThatsNotMyToddler , or anyone else in the know..

I had normal smears always for many years. But Nov 2017 it came back 'minor changes' . Prior to that I did have some mild bleeding after intercourse some occasions but the procedure where they put acetic acid on showed nothing (Jun 2017 I think).

I was supposed to go back but haven't, as having bits of cervix cut out scares me. Completely stupid I know, but just keep saying next week, next week.

Past few months I have had bleeding between periods and after intercourse quite often, it can be brown but it also can be bright red and sort of watery. Also weird stingy pains where I think my cervix would be when the bleeding is happening, lower back cramping/dragging feeling with it as well.

I am going to be brave and make an appointment on Monday for the follow up smear (1 year late), but I wanted to ask.. are my symptoms indicating that it has progressed from minor changes to more severe changes?? can the nurse see CIN3 when doing the smear, or is this not possible and I'll have to wait a month to see if I have it?? And if nurse can see it and I ask her to please tell me if she sees anything, will she / is she allowed to tell me there and then??

My DD just had the vaccine. Wish I was young enough to have had that when I was a teen.

Thank you

Hi lavenderhedgehog
I suggest that on Monday you make an appointment with the GP instead and ask for a gynae referral. That would get you seen quicker then waiting to see if a smear test shows anything.
Smear tests are screening rather than for investigating symptoms. The symptoms you describe may have nothing to do with your cervix. The GP might want you to catch up on your follow up smear test anyway.
I know it's hard to take the step (I've put off going to see the GP about issues myself) but you're doing the right thing.
Good luck and be strong :-)

My last smear showed abnormal cells and negative for hpv, so they test for both where I live. Even though I have abnormal cells the letter said that no further testing was required because I did not have hpv. I am not comfortable with this but there isn’t anything I can do. I know someone that had a hysterectomy in their early 30s due to cervical cancer that wasn’t hpg related.

Minglemangle - your test was done on the "primary cytology" pathway. Since 2012 borderline and low grade abnormal tests are then triage HPV tested to see if you need further assessment.
The new pathway does primary HPV testing - so the HPV test first, then cytology is made from the same sample if it's HPV positive, so the cells can be assessed.
We've previously discussed the rationale for HPV testing (primary and triage) earlier in the thread.

I had cin 3 cells about 5ish?? years ago and had a LLETZ procedure. One year later had a retest which was normal and was also tested for the first time for HPV which was also clear. I was told I would go back to the three yearly cycle of tests again rather than yearly which was the norm before HPV testing in my area. The next test 3 years later tested negative again for HPV but had mild changes to the cervix. Was advised I would be tested in 3 years time.
I've done a lot of research (well Dr Google) and found that most cervical cancer is caused by HPV but not all - rarely it can be caused by something else and not HPV. I asked GP for an earlier test and was advised if I had another test without a letter it 'would be thrown in the bin'. I looked at a private test but couldn't find anywhere local to me. Next month will be my next smear test but I'm 8 months pregnant so likely be in the summer. During a check of the length of my cervix during pregnancy due to LLETZ they found a polyp on my cervix which is also 'unlikely' to be malignant as almost all are harmless. I've spent the last 3 years worrying that I've been treated by the NHS as a statistic as I don't have HPV therefore am 'unlikely' to get cervical cancer. If the HPV test hadn't been implemented in my area, I would have been tested every year at least for 5 years

ilovechocolate

As I replied to Minglemangle - all of England has has triage HPV testing since 2012. 10 year follow up of treated CIN3 stopped at that point. It was implemented after trials looking at risk of having CIN2+ with HPV negative tests. If you look earlier in the thread there are links to the government website where you can find data on the studies.

@BelaLug0si thanks I know I've read the thread I'm just adding my own concerns to the rest that yet again the valid concerns of women are being minimised to fit into what seems to be a cost-cutting exercise. There are several women on this thread who don't have HPV but have had CIN2/3 cells that would be missed when the new pathway is rolled out. CIN does not necessarily lead to cervical cancer but there are quite a few worried women on here who feel they will be one of the 0.3% - me included - and are just worried about consequences for us

If I've understood correctly, the people on the thread were referred for investigation and were treated for CIN3, then had their follow up test which was HPV negative?

If you are unhappy with the change to primary HPV screening then please contact your MP. It is not a decision that GPs or hospital staff took - it was a government / NHS policy decision. The staff working in the service have to abide by the screening programme policies.
No screening test is 100% perfect unfortunately, so whichever test is used not all cervical cancers will be prevented.
I think it was earlier in this thread (could be another, there have been a few recently) where I explained how using primary cytology will become very difficult with the vaccinated population coming through for screening. For screening staff, the change from 10% abnormal rate to 3% abnormal rate makes it harder to spot the abnormal results.

In 2015 I had borderline cell changes and -ve HPV under the primary cytology/secondary HPV test system. This was judged low risk and I went back on 3 year recall.

2018 test was all clear.

Under the new primary HPV system no-one would examine those cells at all to discover that they are borderline.

It's a little unnerving but I can accept that this is a low risk situation.

However like others I am very keen to understand if, now that we are moving to a primary HPV system, it is necessary to have a smear at all as a first line test.

Women's health does have a history of tolerance of unnecessary and uncomfortable procedures when alternatives are available. Routine episiotomies, insufficient pain relief...the presumption that women should just bear it because it's for their own good.

If a large percentage of smears are never even cytologically examined and there is an easier way to test for HPV it should be a priority to change that primary HPV test from a smear to a less invasive, less uncomfortable, less daunting test ASAP.