I’ve never had a smear test and I don’t want one either

[Seventeenstars]

Controversial I guess, I’m 36.
I don’t think it’s necessary, as I’ve read about my risk factors and I don’t meet the criteria. All the men I’ve slept with (without protection) were virgins and yes I know they were for sure.
I also have no family history of any cancer.
My partner has prostate cancer in both sides of his family, his dad has it currently and he’s not even been offered a screening test for this.
I find this so frustrating and contradictory when women and men are treated so differently and if you refuse smear or breast screening you’re seen as an awful person, and those who do are morally superior.
Men aren’t coerced into invasive internal examinations.
I have an aversion to having things inserted in me internally and feel I have a right to that decision regarding my body.
There are home tests for HPV available, which I have done myself in the past - all clear.
My question is why do they persist with this archaic procedure when there are other options available?

I keep getting phone calls from my GP surgery trying to persuade me to book a test. I don’t understand why they’re always pushing it, but just totally dismiss other medical issues, which has been my experience several times.
Do they get extra commission for this or something?
There are even pop up ‘clinics’ and drop in sessions going ahead near me.

Of course I know I’ll be bombarded with replies saying I’m selfish, stupid and uneducated. I’ve even read other women saying that those who refuse should be denied any medical care!
But I have done my research and I am more than aware of the implications.

Are you able to explain how the OP (who is negative for HPV) is at risk of death for not attending a screening for HPV?

Edited to add - Ive assumed you mean Darwin award rather than social Darwinism which has nothing to do with dying.

Even if you disagree with OP, social Darwinism is something entirely different.

Yes see my post above - I think the pp is trying to allude to the concept of a Darwin award.

I think so too, yes.
Bit ironic 😁

No one actually bloody wants one! Personally, I feel more strongly that I don't want cervical cancer, but you do you.

I don't always respond to these threads as they come round like Christmas but maybe more than once a year.

However, for the OP's benefit, I hope @Seventeenstars that you may find the courage to have a screening test. A home test for HPV won't pick up existing changes to your cervix. Only if you have HPV active and present at the time of doing the test.

My understanding is that you could have contracted the virus years ago - it's passed on through hands and tongues even by virgins, if they have had any sexual activity with someone who has it. You don't need to have penetration to get it or pass it on.

Those pre cancerous changes won't show on a home HPV test.

If what I'm saying is incorrect I'm happy to be corrected by a link to a medical site.

The current smear is tested for HPV and in its absence, the test is discarded. If HPV is found then it is further checked for cell changes. The op will be fine

Link as requested
https://www.nhs.uk/tests-and-treatments/cervical-screening/your-results/

If there was inherent clinical value in the visual inspection an examination could still be maintained with the self-test HPV method. But it never was so it won’t be. I think women like to believe this as it adds value to an unpleasant experience.

I’m not sure how this thinking stacks up against the ‘it takes minutes’, ‘I was in and out’ narratives. Logically it just doesn’t make
sense. Many GP surgeries don’t have a gynaecology bed with correct lighting to observe the vulva. Practice nurses are not gynaecologists trained to recognise a range of issues, some of which you might wait years in a clinic to see them come along. I have never had a nurse look for longer than to identify the cervix to take the sample. There is no vulval examination; upthread many posts back, someone even said that she was glad to have gone as it identified an issue with the ovary?! I have never had a pelvic exam as part of a smear.

Realistically, a visual examination may also identify a suspicious mole on your thigh, or a particularly bad pile but it doesn’t mean smears should continue for low risk women when there is a minimally invasive swab available.

basically, the NHS will go to self test. It is just an awfully big ship to turn around.

I've historically be very slack about going for my PAP tests. I have no risk factors. One day a polyp was found on my cervix. I didn't even know you could get polyps there. I had no symptoms at all. Generally those are benign but a small number can turn malignant. Mine was fine but I've changed my attitude about the tests and do think a visual check has value. Not like I can look up there.

That said, my GP is offering self tests for HPV and I'm on the fence about that. I don't really see the value for me but won't be self testing to ensure the visual inspection takes place. It benefited me before.

Do you mind my asking if you had to have a hysteroscopy?

No. I was referred to a gynecologist who did a colposcopy and removed the polyp at the same time. It was sent off, came back fine, and that was that. That was about 5 years ago and it's never come back and there haven't been any other issues.

I'm pleased that was the case for you ❤️ I'm just waiting in my biopsy results. They found an ovarian cyst but hoping it's benign.

Very likely it is benign but always smart to make sure. I hope your results come through soon. I hate waiting for results like that.

Thank you. I've had my blood test so hoping I hear back within a week. I'm just pleased I've been to check it out.

I mean, I actually think women have better options here - you can choose to do it or not.
I understand the decisions about prostate screening are more finely balanced, but I feel a bit sorry for the men here. Most would have screening if it was an option.

I would imagine that a clinical examination and swab is considered best practice, the aim is to reach as many women as possible so self swabbing is a way of including women who are reluctant or refuse a clinic based examination.

Basically a self administered swab is better than no swab.

A significant percentage of women refuse breast screening, there are alternatives but they are expensive. Ultrasound and ct/mri scans can be used but they take longer and cost considerably more. Mammograms will not pick up every cancer but they pick up 30% of all women diagnosed with breast cancer. The rest are either as a result of self examination or incidental finding during tests or examination for other problems. Without early detection the cost to the NHS and patients families would be much higher. Stage 4 breast cancer can, in some cases, be treated palliative for many years but the drugs used are very expensive and prescribed on a case by case protocol. Stage 1& 2 are predominantly curable ( that is they are treated with the aim of them not recurring or a recurrence is expected many years later), mammograms often detect breast cancer well before a lump is palpable and before the cancer has spread.

My breast cancer was just palpable ( it felt different), I noticed it a couple of weeks before my routine mammogram so wasn’t surprised I was called back. It was already 39mm in size, so the size of a small egg. It was only 100mm from the surface of my breast. I was really surprised how big it was and how difficult it was to actually feel. If I hadn’t lost weight it may have been months before I felt it but the weight loss made it more prominent. I never missed a screening mammogram and self examined monthly after my DSis was diagnosed at a young age. My DSis was tested for the BRCA genes and was negative so we were not seen as high risk. Mine developed post meno after 4yrs of taking HRT, even with two of us in the family we are still not considered a genetically high risk our breast cancers were very different. Basically we were just unlucky.

Screening saves lives and gives other years extra even if diagnosed late. Breast cancer is still increasing, there are many possible reasons for this, probably the most common is that we are living longer and cancer is a disease of aging cells.

Hopefully, with vaccination and HpV screening , cervical cancer will become an uncommon cancer, and women can feel a little less anxious about developing it in the future.

I will be eternally grateful to the breast screening service and the cervical screening service. I may not have had cervical cancer but the fact that I was screened every 3-5 yrs throughout my adult life has reduced some of the anxiety.

Hopefully, the future will bring more accurate screening for all cancers and life changing, preventive treatments so the common cancers no longer require the invasive, disfiguring and often life altering treatments currently available.

I also would argue that no woman is low risk for cancer. Cell mutation is a random occurrence and is in the vast majority of cancers just bad luck. You can lower the risk factors but you cannot eliminate that random chance of a cancer cell occurring.

I found out the hard way that being overconfident about my individual risk meant that, like many women, I was somewhat shocked that it had happened to me. I had played the statistical roulette in my head and convinced myself that I was low risk, I was, but statistics are a funny thing and just because your risk is 1 in 100 you can still be that 1.

I am part of a large online support group and every new member introduces themselves with the same rant, “why me, I’m not high risk”. It is probably one of the hardest things to accept when diagnosed, no one can tell you why you have cancer.

If you have a cervix you can have cervical cancer.

@Crwysmam by ‘low risk’ I mean women who have not been called for additional screening/treatment ie those women for whom their smear test would not routinely be examined beyond the HPV screen. I have heard that women who have previously tested positive for HPV and have been called for additional screening and treatment would continue to be offered a smear. That would make sense as for the majority of women, there is no need to have cells that can be examined; they are ‘low risk’.

@Crwysmam

I think you can be low and high risk for infection with HPV, that’s the thing.

The UK has had selftesting available long before Australia. It was available privately, apparently. I first read about it being a possibility on MN around 2020, so it has been possible to self-test in the UK for quite a few years. It is apparently being rolled out on the NHS, starting this month? How long it will take to become widely available is debatable.

It is a good option for patients who fear speculums, etc. But it is not a replacement for a five yearly cervical smear for most women, who don't - as that exam offers so much more. Are you going to palpate your own abdomen and check for ovarian cysts or masses? Are you going to stick a speculum up yourself and rig up mirrors and torches to check for any other abnormalities? Obviously not. Even skin changes that might occur during the perimenopause early years and go unnoticed or misunderstood, leading to painful problems, can be picked up during a proper in-office cervical smear done by an up to date doctor.

And in addition to being rude, they're wrong, as the 'Darwin Award' means dying before reproducing, and the OP has had a child.

My lovely friend had her cancer found when she went for a smear and the nurse noticed a lump. She had to have an emergency hysterectomy. Without the smear procedure they wouldn't have seen it and the outcome could have been very different.

Not all cervical cancer is caused by hpv. Also as someone who stupidly didn't go and got diagnosed with cervical cancer when my daughter was 8, go for a 2 min test.

@midnightbluelobelia I've never once had my abdomen palpated at a smear test. Nor have any of my several GPs rummaged around. It's in, peer at the cervix, scrape it (ack!) and out again. None have mentioned checking for ovarian cysts or masses. Is this something that actually happens, for most women? They do however ask about any concerns I might have, or any changes.

I think the primary issue for nation cervical screening is ensuring that as many women as possible are tested for HPV. If self-swabs will increase compliance in achieving that goal, then shifting to a primarily self-swab model makes sense.
Yes, it may mean that other cancers or issues aren't spotted, but it's a trade-off - if 25 women's other cancers aren't detected by visual inspection but 500 cervical cancer cases are found, it's worth it on a population level - that's why they don't test for non-HPV cervical cancer; it's not worth it financially. And there seems to be very little data on how often GPs spot serious issues with the naked eye.

However I would agree that teaching women to be aware of bodily changes is important, and encouraging women to go to the GP for a smear if they feel anything isn't quite right. Self-swabs should also come with information about vulval and other gynae cancers, and signs to look out for.

You're absolutely correct it's not always caused by HPV

Unfortunately that doesn't change anything for the OP. Because if it was caused by something other than HPV she wouldn't be aware as zero further testing is done when the HPV test that is now the smear test comes back negative 🤔