Cervical Smears-Not to Go?

[B1rthdayD1lemna]

So I’ve always been very compliant with anything medical but after a number of really bad experiences (most NHS but some private) I’m now more sceptical.

I’ve been invited for my latest smear test, and inspired by another current thread on women’s health, I wanted to ask IABU if I don’t go?

I know for some people smears can be painful and even traumatic. I’ve been lucky not to have been in that situation. However, I am concerned about the downsides-mainly, the risk of false positives. Basically where something “abnormal” is treated but where it wouldn’t have actually caused harm. I think these are a recognised downside for preventative screening programmes, but I don’t know what the risk is for smears and breast screening. I’m not in an at risk group so far as I know. If I noticed a problem I would definitely get it checked out but just want to take a risk-based approach.

Because the stick for you to take your own sample does not guarantee you go high enough or cover enough area to get sufficient cells. There’s a reason they use a speculum and why it hurts a bit. No woman is going to get a good enough sample with a stick. It’s ridiculous. These tests save lives but only if you take them. In time/ often enough.

If I remember correctly it was op spreading misinformation on the other thread. A lot of people were telling her to go get tested.

Haha not me 😂

It’s an STI test. It’s quite unlikely that you would get a false positive on a viral swab, then have cells investigated under a microscope and get another false positive. And then even if you did, it’s just a colposcopy and biopsy. No big deal. I’ve had several of them. And only then after 3 rounds of screening and diagnostic testing would they diagnose you with cancer. At which point you’d be very grateful they did.

I was diagnosed late for cancer (not cervical) because my GP fobbed me off as making a big deal over an obviously benign condition. Except it wasn’t benign. It was a particularly aggressive cancer that historically has a fairly low survival rate. Instead of being diagnosed at stage 1, it was already stage 3c by the time I did get them to refer me 6 months later. One teeny bit off being stage 4 and incurable. I got diagnosed pretty much on my 44th birthday.

Now I’m very fortunate that I am in otherwise peak health and I have had an absolutely fantastic NHS surgical and oncology team who have advocated for me and pushed my case through and gotten me on treatment incredibly quickly. As a result, I’m now half way through 12 months of treatment and 5 planned surgeries (2 more left to go), and I am currently cancer free. I would not have been so lucky if things had gone differently for me or I hadn’t push for a 2nd opinion. I’d be bloody running not walking to any cancer screening. You truly cannot imagine what it’s like to look your own death in the face until it happens to you.

No this wasn’t me! I don’t know enough about this (that’s why I posted) so I definitely wouldn’t be advising others!

Over the years I've had 2 loop biopsies and a punch biopsy following abnormal smears. It has never come to anything but I still never miss a test.

They have changed the way they screen now, unless you test positive for HPV they don't tend to send you for biopsies, apparently. Just go, it's better to be safe than sorry surely?

It is a simple quick appointment the nurse doesn't want to be poking down there for to long. My mum died at 65 from a stroke and a heart attack she had endometriosis it was on her death certificate. She had regular smear tests. It is easy and you are in and out.

I’m really glad you have a good team. This is actually really helpful, and it sounds very thorough if they do 3 rounds of testing.

I’ve watched my colposcopy, twice. It’s not something they can do unnecessarily. The bits they treat are visible ..the ‘bad cells’ are obvious. if the skin is healthy, they can see that and aren’t going to remove it. The danger is what they cannot see..if it’s spread much higher and gone into the womb. So be careful what you’re worrying about.

Same with breast screening..I noticed someone mentioned that. Anyone who thinks it’s safe to miss the opportunity to have a test is deluded. I was in a low risk category for both Smears and even lower for breast screening. But I do have something in my left breast. They say it’s tiny and might be benign but I’ve to go back in a couple of years…I don’t get regular screening any more . I need to self refer. Old enough they don’t really care. For gods sake, take all the screening tests they offer. It’s a bit of time, but can save your life.

Thank you @Katewashere I think a lot of PPs are not understanding why I posted/my concerns. For someone who has health anxiety (so severe I’ve been actively suicidal) monitoring and waiting for test results isn’t so simple. I really appreciate you posting.

And again just to be clear to other PPs I’m not trying to discourage anyone ftpm
getting a smear and I haven’t posted about this before!

They never presented it to me as a choice. First I had a really painful follow up smear, then an incredibly painful LLETZ where I was left with burns and scarring on my labia, then 6 monthly very painful smears for 5 year follow ups and the whole thing kicked off a major health anxiety that took a further 4 years to get treatment for because, well, GPs basically told me to pull myself together until it got to the point I couldn’t leave the house. Having had my records reviewed by a second gynae when I had my hysterectomy she concluded I was at minimal risk of the abnormal cells being linked to cervical cancer.

I understand the wider picture about the numbers, but it’s also worth knowing that a study from Bristol in 2003 found that 1,000 women have to be screened for 35 years to prevent one death from cervical cancer; and to prevent that death, 80 women have to have further investigation, with 50 women having treatment to their cervix. Four out of five women found at screening to have "high-grade" changes in their cervix did not go on to develop invasive cancer.

We hear all the stories of how Jade Goody missed a smear test and died of cancer. But that’s a tiny part of the story. She had abnormal cells removed when she was 15. She had cells removed a further two times and what she actually missed was going back for a fourth procedure when she had an abnormal smear result. She also had other symptoms of cancer. It’s incredibly sad that she died, and IMO it’s a failure of the health system, and how it treats women but her case is incredibly rare. There are also dozens of “smear test saved my life” stories in the media, but what you don’t hear is the stories of the 49 women who have needless treatment for every one of those people who were saved.

Would I still have had the treatment if I’d known all this before? Probably. Risk v consequence, I guess what I went through outweighed the risk of developing cancer. But anyone who trivialises it as “it’s just a quick test” or treats someone as an idiot for being concerned about it, should understand that even NICE publishes information about the disadvantages of the test and clinicians are supposed to advise patients about it. Unfortunately the narrative seen here about it being the single most important thing a woman does, also pervades the NHS who think that treating women as commodities and having targets for how many women have the test is a good thing to do.

My mum didn't take care of herself it wasn't the endometriosis that killed her.

I've seen someone post about this before and they were basically told they deserved to die if they didn't go for their smear....glad this thread hasn't gone there yet!

Why did you write that a call back is a false positive then?

They can be very invasive and I understand your concerns. They now only test for (some) hpv strains which can be done via a urine sample home kit which you can order if you prefer. You’ll need to pay for it x

Since they only test for HPV now, I just do a private HPV test that you can administer yourself, from home.

Obviously if it comes back positive you have things to think about, but most don't.

There are currently trials about this being how the NHS do smears in the future anyway - home testing - and the tests are reliable.

Self sampling is under assessment for use in the NHS. If you search for HPValidate and YouScreen, you can read the published studies so far.

I’m really sorry to hear about your experience x

My mistake op. There was a woman from a different thread last week just said something very similar in how you worded your thread and was spreading misinformation and thought it was you. But it’s ultimately up to you to make that choice. You have a lot of good advice here. You have the decision to not make an appointment and you can’t be forced into anything you don’t want to do. HCP are there to help and look after you.

I had trouble convincing my doc. For 2 years he told me I was imagining things after my second colposcopy. I was being neurotic. A different doc then arranged an ultrasound…which led within 4 weeks to a CT scan and anothefpr few weeks to an MRI. The biopsy failed..too much risk of perforating the womb they said. So they went ahead with a total hysterectomy. From ultrasound to hysterectomy was 4 months..pretty quick for the NHS. The first doc was wrong and if I hadn’t pushed , I might not be here but I’d be dead like my sister

Awful. And these are women that are saying this 🙄

You are absolutely right. All screening tests carry the risk of harm. That’s why you have every right to say no. Cervical screening however has a low risk of this and a high chance of picking up something at an early treatable stage. There is much less evidence breast screening is a good screening programme. Even though I know this I still go. It’s my choice and you have every right to make a choice just make sure it’s an informed one. Read the screening information on the nhs websites

You don't "get cells" with a home sample though. A vaginal swab can test for HPV, which is all the smear tests do in the first instance. If that's clear, a smear wouldn't have checked for abnormal cells anyway.

I was called back for a repeat smear once, would this have been a false positive? Nothing was found. All smears since have been clear.

YANBU. It's your choice.

I've never had one and never will. I don't have HPV.