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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To not know they did this at a smear test

200 replies

ILoveBray · 11/03/2019 13:22

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 Grin

This post was edited by MNHQ at OP's request

OP posts:
Chouetted · 11/03/2019 15:24

My understanding is that it is a very high relative risk.

PPs have confirmed it. The OP is not incorrect, it's just that on a population level, we have a massive lack of understanding of how levels of risk work - people read "high risk" and think "absolute risk".

Sorry, bugbear of mine - carry on

downcasteyes · 11/03/2019 15:25

LHMB - please don't feel dirty. The vast majority of women have had HPV! It's hard to estimate exactly how prevalent it is because it's usually symptomless, so women don't even know they've had it.
Estimates of prevalence vary from the late 70-something % to the late 90-%s. It's nothing to be ashamed of. Flowers

birds - when you have a cervical sample taken, it now goes first for HPV testing. If you are HPV negative, you are clear. If you are HPV positive, they will examine the same sample for cellular changes (as was the case with the old smear). This is clearly explained in the leaflet you receive with your invitation and it has been adopted because it's now considered a more accurate way of screening women!

Just because you are not sexually active does not mean that you don't have HPV. As I explained previously, it can lie dormant in your system (with no symptoms) and flare at a later point (causing symptoms). Ongoing testing is therefore advised for this reason. Of course, if you don't want to take up the offer, that is always your prerogative.

Friend - it can take the body a while to clear an HPV infection, but there are plenty of women who have that same experience and who are fine. Please try not to worry!

Boo - I'm so sorry you've been through that, it can be really emotionally tough. Flowers

Obviously, without knowing details of your case I can't really comment. Generally speaking, the sensitivity and specificity of HPV testing has really improved over the years.

"If almost every sexually active person gets HPV at somepoint, how can they unpick that as a definite cause of cervical cancer?"

It's not having HPV or not having HPV that matters. It's PERSISTENT, ACTIVE HPV. When the virus lingers around, it starts to cause cytological (cell) changes. This is not the same as it being dormant (when it doesn't 'do anything' in the body) - it's the virus being present in an active state for a longer time that causes the problem. Smile

downcasteyes · 11/03/2019 15:28

"My understanding is that it is a very high relative risk."

To restate:

  • most women get and clear HPV infection with no issues. It's common, symptomless, and in most cases problem-free.
  • however, in some cases, women can't clear the infection. The HPV persists and starts to cause cellular changes in the cervix.

Therefore: having HPV briefly, or having had it and cleared it are NOT high risk. However, having persistent, active HPV infection IS associated with cellular changes. The cervical screening programme is designed to catch these changes early, when they can be easily treated.

I have to run to work now! Smile

PurpleDaisies · 11/03/2019 15:30

They are testing both the cells and for HPV for me. Not one or the other. I'm surprised there's so much variation depending on where you live.

That’s because at the moment we’re in the phase of rolling out primary HPV screening. By the end of the year, everywhere will be screening for hpv first and only looking for cell changes if that’s positive.

ILoveBray · 11/03/2019 15:38

PurpleDaisies

That’s because at the moment we’re in the phase of rolling out primary HPV screening. By the end of the year, everywhere will be screening for hpv first and only looking for cell changes if that’s positive.

Thank you, I didn't know that. As PP have said, won't that increase the risk of a non HPV related cancer not being detected?

OP posts:
PurpleDaisies · 11/03/2019 15:42

As PP have said, won't that increase the risk of a non HPV related cancer not being detected?

Yes, it will. But since over 99% of cancers are hpv linked and more deaths are prevented by screening this way, on a population level it’s worth it. It does seem counter intuitive though.

abcriskringle · 11/03/2019 15:42

I have been tested for HPV every smear I've had (I'm 31). I did have it once but it cleared up on its own.

PanamaPattie · 11/03/2019 15:43

🙄

PurpleDaisies · 11/03/2019 15:45

What does that face mean panama?

LHMB · 11/03/2019 15:45

downcasteyes thank you so much Flowers

LetheBiscuit · 11/03/2019 15:47

I'm pretty sure they test for HPV whether they include it in the (clear) results or not. I have had a clear smear in the same region where a friend came back HPV positive, and my clear results said nothing about HPV whatsoever.

FriendOrFaux · 11/03/2019 15:49

downcasteyes
Thank you for good, solid advice. Flowers

sighrollseyes · 11/03/2019 15:54

I think this thread highlights the lack of understanding around all things screening - I hope PHE can publish some materials that make it understandable for the whole population because it's quite clear here that many people have no idea what the different bits of the test are, what the risks are etc.
My advice as someone who works in public health is go to any screening appointments you get invited to - cervical, breast, bowel etc and ask as many questions as you want at your appointment if you don't get sufficiently detailed answers you are quite within your right to ask for more information as a patient.

LifeIsToughMate · 11/03/2019 15:57

So I keep developing those polyps/cysts on the canal and it keeps being removed and discounted as nothing serious. I have a feeling i need to look into it further. Anyway has a clue ? I had my smear just a year ago and I don’t think they tested for HPV

Runkle · 11/03/2019 15:59

I had one a couple of weeks ago (in Wales) and the nurse explained they've changed the test since my last one (2016) so they are testing primarily for HPV now and they will refer you to hospital for colposcopy if necessary.

LucilleBluth · 11/03/2019 16:31

So if they're going to change it to only screening for HPV then surely some women will slip through the net with cancerous cells without proper cervical cancer screening. Mostly those of us 35 plus who are too old for the vaccination.

Or is that not right?

LilQueenie · 11/03/2019 16:43

that is insane. surely they should still be using the older screening method alongside the new one. So now anyone who gets a rare cancer is basically left to get on with it.

Chouetted · 11/03/2019 16:59

@downcasteyes That's exactly what I said, in more words - it is a high relative risk. It's just not a high absolute risk.

You can't say "high risk" or "not high risk", those words are meaningless. To understand the risk, you need ideally both.

If your risk has increased from 0.0001% to 0.01% you have a very high relative risk, but your absolute risk is very low. People get this mixed up all the time, including HCPs and almost all journalists.

7Pip · 11/03/2019 17:01

Ok, so say you're 30. You had a persistent HPV infection in your early twenties (that you knew nothing about). It has since cleared up and you now test negative for HPV at your first ever smear test. Could it be possible that the infection in your early twenties has indeed caused cell changes - in fact, you're at CINIII. But they won't know, because they're only testing for a live active virus now?
This doesn't seem right to me at all. Confused

7Pip · 11/03/2019 17:02

Going to try to root out the letters I got about the results.

7Pip · 11/03/2019 17:11

Ok found the letter with the original results from smear test.

"The laboratory found some slightly abnormal cells called borderline changes in your sample. .....sometimes caused by a virus called HPV.
The lab also tested your sample for HPV and found that you have an HPV infection.
.................
Having an HPV infection means that any abnormal cells in your cervix are less likely to go away" Bla bla, refer for colposcopy.

I happened to see the results they sent to my GP on the doctors screen and that said 'high risk strain of HPV"

Hmmmmmm

Following the colposcopy the letter reads
"writing to confirm that the biopsy taken has shown no pre-cancerous abnormality. Research has confirmed that women with borderline or mild dyskaryosis have only a 15-20% chance of having an abnormality significant enough to need treatment and therefore as per national guidelines we are discharging you from the colposcopy service." Next screening test due in 3 years time.

I'm not happy to hear that they are only checking for HPV now and not for precancerous cells to be honest.

PurpleDaisies · 11/03/2019 17:12

that is insane. surely they should still be using the older screening method alongside the new one. So now anyone who gets a rare cancer is basically left to get on with it.

that is insane. surely they should still be using the older screening method alongside the new one. So now anyone who gets a rare cancer is basically left to get on with it.

Screening tests went about identifying women with very rare cancers. They’re about preventing the greatest number of deaths by identifying women who need treatment before they show symptoms. This new way of testing does that.

Every woman needs be vigilant and know the symptoms of cervical cancer. Women with rare cancers will be diagnosed then.

PurpleDaisies · 11/03/2019 17:12

That should say ^screeming tests are not about identifying women with very rare cancers

PurpleDaisies · 11/03/2019 17:16

I'm not happy to hear that they are only checking for HPV now and not for precancerous cells to be honest.

Aren’t you happy to hear that the new way of testing has been shown to be better in a massive study?

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