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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

To think they should test every smear for abnormal cells even if you are HPV negative?

71 replies

Notmoreraining · 02/10/2020 15:45

Just had the results of my smear and it says that I have tested negative for HPV so therefore they won’t be testing for abnormal cervical cells even if I’ve had them before because the risk is low. I am appalled. I went through a smear test for them not to to even bother testing for abnormal cells, wtf? Even if the risk is low I want them tested. Just read 70% of abnormal cells/cervical cancer are in people testing positive for HPV so what if I’m in that 30%? Are the NHS now routinely only testing for abnormal cells where there is HPV and is there going to be a big rise in cervical cancer as a result - or is the 30% that will now be missed too small a number of new cancer cases to even register? Don’t think this change - if it is nationally across the country - has even been publicised widely. Does anyone know about it or when it was brought in? Thanks

OP posts:

Someonesayroadtrip · 02/10/2020 19:46

[quote Sidge]@Someonesayroadtrip if a woman has symptoms such as bleeding between periods, bleeding after sex, pain discharge etc she needs referral to gynae for colposcopy examination, NOT a smear at her GP surgery.

Smears (or primary HPV screening as it is now called) are a screening tool, not an assessment or diagnostic tool.[/quote]
But surely it would pick it up still?

I am referred and as urgent but unfortunately welsh NHS urgent is now 28 weeks due to COVID.

I still think it's silly not to test for people with symptoms.

TheSpottedZebra · 02/10/2020 19:50

Is there not an easier way to test for HPV rather than a smear?

TheSpottedZebra · 02/10/2020 19:50

By easier I mean less invasive.

PurpleDaisies · 02/10/2020 19:52

Is there not an easier way to test for HPV rather than a smear?

Yes, and that’s going to be coming I’m sure, but the advantage of a smear test is someone actually looks at your cervix.

TheSpottedZebra · 02/10/2020 19:55

Yes, and that’s going to be coming I’m sure, but the advantage of a smear test is someone actually looks at your cervix

But what's the point of looking if they dont test the cells ? Do they 'act on' visual info also?

Sitt · 02/10/2020 19:56

Yes if they saw something they would refer

DimidDavilby · 02/10/2020 19:58

Thank you for the 3 in 1000 explanation-- I feel less worried now.

I forget who asked but my nurse said there was absolutely no way to have a sample further examined and to ask for a gynae referral if still concerned.

Yes @thespotyedzebra if your cervix had any visual changes they would also refer you.

Sitt · 02/10/2020 20:00

The nurse said as she examined me that everything looked fine visually

Chesneyhawkes1 · 02/10/2020 20:07

The symptoms I had were breakthrough bleeding and bleeding after sex, also sometimes if I went for a particularly hard run.

I thought it was just to do with my copper coil as it started not long after I had that put in.

I had a smear test and that made me bleed too. Then it got sent off and within 2 weeks I'd had a colposcopy with lletz. I also tested HPV positive.

I got the results of the colposcopy super quick, I think within 5 days. Which confirmed I had cervical cancer. That was the end of March. Started treatment April. Finished it in June. Got the all clear first week of September.

The whole thing was dealt with so quickly.

Cantbutwill · 02/10/2020 20:10

Could someone please explain this to me, I’ve wondered for years and never quite got to the bottom of it. So if someone has had HPV and tested positive, then in subsequent years, smears have come back clear, does this mean that HPV has gone? Would that person then still have the same risks of developing cancer as a current HPV positive person? I hope I’ve worded that clear enough?!

Cantbutwill · 02/10/2020 20:12

Glad you got the all clear Chesney, that seems like a quick turnaround thank goodness.

Chesneyhawkes1 · 02/10/2020 20:16

@Cantbutwill thank you. It really was. My friend who had it last year but had a radical hysterectomy for her treatment still tests positive for HPV.

I don't know if I still am or not tbh. It wasn't mentioned again. I guess I'll find out at my next smear. I'm hoping the chemo or radio will have killed it off!

EdwardCullensBiteOnTheSide · 02/10/2020 20:35

I agree op.

crimsonlake · 03/10/2020 00:04

In my earlier post I should have added I went on to have a cone biopst, no idea whether it is such a thing now, but was done y=under general anaesthetic and a horrendous 2 week wait for results.
Cin 3 was detected was detected after a normal smear result previously.
I had no symptoms whatsoever and was totally shocked as to how it could go to what was described as normal to severe dyscariosis in that time.

Goosefoot · 03/10/2020 01:23

Yes, YABU, but this kind of feeling isn't unusual because a lot of people don't really understand that screening is not that straightforward.

It used to be assumed that the more screening, in all kinds of areas, the better, you'd catch more cancer or problems and be able to fix them.

What more studies have revealed is that it is not that straightforward. Not all abnormal cells or positive results are equal and require the same response, and it doesn't actually save lives to treat every instance. In fact, there can be downsides and treatment can cause problems in some cases, plus it's not cost effective. Cervical screenings are one area where there have been a number of changes in recent years.

As a result of these kinds o studies there have been refinments of screening criteria over the years, in order to make screenings more effective, to prevent problems of over-treating, and to put funding where it is most useful.

Goosefoot · 03/10/2020 01:35

No - if you have a screening that picks something up, then you go for other diagnostic tests.

If you have other symptoms that indicate that you could possibly have something, they send you right to the diagnostic tests - there is no reason to send you for screening at that point.

PotholeParadies · 03/10/2020 02:03

DiscontentedWoman

This is bollocks because cervical screening used to workexactlythis way - every sample examined fully

As I understand it, research suggested there were too many false positives. Cell abnormalities that would not have developed into cervical cancer were treated with a cervical cancer protocol, and cancer treatment is not risk-free.

Obviously, if you have cancer, the benefits of cancer treatment massively outweigh the risks! But if you don't have cancer, or are not going to develop cancer, they don't.

Goosefoot · 03/10/2020 03:15

They've also learned more over the years about the course of the disease, including in different age groups, and it makes a difference to what they see as useful to treat.

JamMakingWannaBe · 03/10/2020 04:43

I'm another one who tested negative for HPV but had abnormal cells detected by a smear - 20 years ago now, in my early 20s! In England I wouldn't even have been eligible for the screening program at this age. My cousin died of cervical cancer and I too am deeply concerned that the HPV vaccine is incorrectly thought to be a vaccine against cervical cancer and that the cell scrapings taken during a smear are not longer being looked at for changes. The original screening program was to detect abnormal cell changes before they potentially became cancerous. Now it appears you have to actually develop cervical cancer / the symptoms of before you get treatment.

110APiccadilly · 03/10/2020 09:21

As a few others have said, it's to reduce your risk of a false positive result - in human terms, your risk of medical investigations/ treatment /etc when you're not actually ill. If the disease itself is rare for people like you (in this case those without HPV) then it means a higher proportion of the positive results they get will be false positives.

I don't have the stats for this one to hand, but it's not that hard to come up with real screening scenarios where a positive result still means you're more likely than not to not have the disease. One such is screening young women for breast cancer and that's why the NHS doesn't do it.

(It's likely that screening virgins and those who've had only one partner who themselves has never had another partner for HPV would fall into this category. I suspect the reason the NHS doesn't say this is to do with concerns about people not coming forward for screening.)

Hopoindown31 · 03/10/2020 10:15

This is bollocks because cervical screening used to work exactly this way - every sample examined fully

Yes it was, my mum used to be a cytology screener. Since then they have massively downsized this function in NHS path labs, because of the diagnostic power of these other tests (and it is a nice cost saving). My mum was moved over to histology instead. The next breakthrough will be machine detection of abnormal cells, probably doing away with screeners altogether.

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