It's Cervical Cancer Prevention Week. Put your questions to the experts from Jo's Cervical Cancer Trust, Friday 27 Jan, 1-2pm

[RachelMumsnet]

To mark Cervical Cancer Prevention Week, we’re running a webchat on Friday (27 Jan) lunchtime, between 1 and 2pm with Adeola Olaitan and Claire Cohen from Jo’s Cervical Cancer Trust. Please join us then, or post your questions in advance on this thread.

Every year in the UK, around 3,000 women will be diagnosed with cervical cancer. It is is the most common cancer in women aged 35 and under. Adeola Olaitan, Consultant Gynaecological Oncologist at the University College London Hospital, and Claire Cohen, Head of Information and Education at Jo’s Cervical Cancer Trust will be on-hand on Friday to answer your questions, whether you're unsure what the symptoms are, have questions about cervical screening (smear tests), are worried about your chances of contracting cervical cancer, or you've been diagnosed and want to know more about treatment and support.

Join Jo’s Cervical Cancer Trust this week for their #SmearforSmear campaign to raise awareness across social media this week. Find out how you can join in.

The reassurance that all is well. Essentially you would not know if you had abnormal cells or not without attending screening. Fine if you do not have an abnormality. Potentially dangerous if you do

@SaucyJack

"Hello & many thanks for your question. I think that this is a misunderstanding of the statistics. Every woman who attends for cervical screening benefits. By picking up cells which cause no symptoms and are not cancer but, if undetected and untreated, could develop into cancer, lives are saved."

But in 80% women who attend cervical screening, no abnormal cells are detected, and there is nothing to treat.

What do those 80% benefit medically from then?

@Morningbear

Hi,

Apart from having regular smear tests, are there any lifestyle changes I can make to reduce my chances of getting cervical cancer?

Hi there,

Not smoking is one of the biggest lifestyle changes you can make to reduce your risk of getting cervical cancer. Smoking affects the cells of the cervix and makes it much harder to clear HPV, the virus that causes cervical cancer. If you're having sex, using a condom can also help to reduce your risk of getting high-risk HPV. You can find more details on jostrust.org.uk.

@MrsPorter

Another sexual assault survivor.

I literally can't attend a smear (have tried; am addressing this in therapy). I've seen ads for the private HPV test which claims that HPV causes 99.7% of cervical cancer. Do you think it's worthwhile for patients to have a non-invasive HPV test to inform their smear decision, or is the science/evidence not in favour?

As an aside, I feel belittled and dismissed by campaigns which say anything along the lines of "it's a bit uncomfortable and embarrassing but it only takes a minute and could save your life" because if it were only a matter of discomfort and embarrassment I'd have gone.

Hi MrsPorter,

I can completely understand why attending a smear would be very hard for you. At the moment, some parts of the UK are trialling primary HPV testing using self-sampling kits, and this may in the future be available as part of the national screening programme. A private HPV test is always an option, however it's not linked to the national programme, so it would mean, if HPV were found, it would be difficult to bring those results into your GP's surgery. That being said, it could help you make a decision about attending a smear test.

mybodybackproject.com is an organisation that supports women who've been through sexual assault, and they offer special clinics that women can attend to have their smear tests done.

Hello. I am sorry to hear of your traumatic experience. The HPV self-test is certainly a better option than no screening at all & I would encourage you to have this done. If you are HPV negative then the risk of cervical abnormalities is insignificant. If you are HPV positive you will require further testing & you can discus with your Dr how to have this done without distress

@MrsPorter

Another sexual assault survivor.

I literally can't attend a smear (have tried; am addressing this in therapy). I've seen ads for the private HPV test which claims that HPV causes 99.7% of cervical cancer. Do you think it's worthwhile for patients to have a non-invasive HPV test to inform their smear decision, or is the science/evidence not in favour?

As an aside, I feel belittled and dismissed by campaigns which say anything along the lines of "it's a bit uncomfortable and embarrassing but it only takes a minute and could save your life" because if it were only a matter of discomfort and embarrassment I'd have gone.

@Janey50

Hello. I had a smear test in the middle of December last year. On the 5th of January I had a text from my GP's surgery saying that my results were back and that I needed to make an appointment for a telephone consultation with the doctor. I did this and spoke to the doctor on the 18th. He said my results had shown 'borderline changes,which were probably nothing to worry about'. He also said that I just needed to go for a routine smear test in 5 years. I am not questioning the doctor's wisdom,but 5 year seems a long time! Is this the normal recommendation? I am 53,and all my previous smear tests have been normal. I was not sexually active between mid 1997 and mid 2012. Since then I have been. Would this have made any difference?

Hello
If you are over 50 then the screening recommendation is every 5 years. If your smear is reported as borderline, the lab will automatically do a HPV test. If this is negative then your risk of a significant cervical abnormality is negligible & the guidelines are that you can return to the normal screening interval.

i hope this reassures you

@GurlwiththeCurl

I am now 60 and have not had a smear for about 10 years, however, I have not had sex for over 12 years. Do I need to have a smear if I am not sexually active at all?

I also finished my periods about 12 years ago.

Smear tests are really important, because they look for changes in the cells of the cervix before they turn into cancer. Those changes are caused by a virus called HPV. You're most likely to get HPV the first time you're sexually active, and if you've ever been sexually active you could be at risk of developing cervical cancer - so even if you haven't had sex for over 12 years, a smear test would still be a good thing to do. If you're 60 now, this will probably be your last smear test, as they finish at 64. Smear tests save 5,000 lives each year in the UK.

Thanks both for your responses. I think it looks like a good option for me at present (and the company I've been looking at is doing a £50 off deal during Cervical Cancer Prevention Week so it's timely!).

I have only had one smear - I was having a different procedure done under GA and the gynaecologist did the smear then (pre-consented, obvs). Obviously a smear isn't worth a GA on its own but it was very convenient ...

Re my body back project. I interpret is as give me my body back so I lie on my back and hand it over to the NHS. The project fails to empower women to make an informed choice re screening and ignores the psychological harms caused by screening.

@hotchocforme

I had breast cancer two years ago (aged 33). No family history of cancer and I do not have the BRCA genes.

Will I be at higher risk of ovarian cancer than the general population?

No, there is no link to cervical cancer if you've had breast cancer. Cervical cancer is caused by a virus called HPV. Have a look at jostrust.org.uk for more information.

@hotchocforme

I had breast cancer two years ago (aged 33). No family history of cancer and I do not have the BRCA genes.

Will I be at higher risk of ovarian cancer than the general population?

Hello
The BRCA gene does not increase the risk of cervical cancer & if you are BRCA negative then you do not have an increased risk of ovarian cancer either.

You should however still go for regular cervical screening as this is proven to protect women against cervical cancer

@Kleptronic

In my area of the country, at my last smear test, I was told they were testing for HPV also, as part of a trial. I got a letter saying my smear test is normal, and I don't have HPV, and because of this, I won't be called up for any more smear tests. Surely this can't be right? I could catch HPV any time, or they could have tested for only one/some variant/variants, or I could be one of the rare people who get cervical cancer without HPV?

Are you over 64?

@WhatAPigsEar

How accurate is the HPV test that some areas do as part of the cervical smear test? I've received a letter telling me my smear test showed abnormal changes but that as my HPV test was clear I should just return for another smear in 3 years as normal. This has worried me somewhat and now I'm thinking of paying for a private smear in a few months. Would this be helpful?

The smear test looks for abnormal cells that have been caused by high-risk HPV. High-risk HPV causes the majority of cervical cancers. So if your smear test showed abnormal cell changes but no active HPV, then you are at a low risk of developing cervical cancer, and those changes will probably go back to normal on their own.

Hi
I am sorry to hear that smear tests are distressing for you. There are a number of things that can make this better.

If you are post-menopausal then applying oestrogen cream to the vagina for a few weeks before the test will make the vagina more elastic and less likely to bleed.

In addition, you must tell the smear taker of your concerns. He/she can use additional lubricant and a smaller speculum so it is less uncomfortable.

I hope these tips are helpful for your next smear

@FeelingSmurfy

I have fibromyalgia and that makes smear tests really painful, during and for a few days after, and it also seems to be common to bleed quite a lot for a few days afterwards if you have fibro (from discussing it in groups, not everyone did but high percentage)

Any tips on what we, or the person doing the smear test, can try to lessen the bleeding or pain

I'm due my third one later this year, I would never let the pain and bleeding put me off because I know how important it is, but any tips would be gratefully received

Tipsys I think that's a bit unfair. I think it was a very appropriate link in response to my question about access to smear testing for sexual assault survivors.

I'm actually in tears reading their website because they're explicitly accommodating all the difficulties I have previously experienced which have simply been waved away by HCPs. For the first time ever I'm thinking about a smear as something I could take part in, rather than something that would be forcibly done to me.

@ToadsforJustice

I am also interested in the answer to JohnnyMcGrath question.

Attendance figures for screening are on the decline. Embarrassment, pain or not understanding the purpose of the test are often used as reasons. As screening is a personal choice, perhaps the reason for the decline is that women have made a informed choice not to screen.

I agree that screening is a personal choice & that is made very clear in the new NHS screening invitation letter. That said, a large number of surveys have shown that it is lack of time, fear & embarrassment that puts women off attending screening, not a conscious choice to withdraw from the screening program.

I have found that to be the case in several women who have been referred to me for further tests after delaying their screening appointment.

The important thing is that women base their choices on clear, accurate facts

@JohnnyMcGrathSaysFuckOff

How would you respond to the well-publicised criticisms of people like Margaret McCartney, a GP who does not herself get smear tests? Do you think her interpretation of the data is wrong? I have never actually seen a proper medic challenge her findings and would be interested to see what they'd say!

Hi there,

Having any medical test is always a personal choice. The smear test can help to prevent cervical cancer. In fact, it helps to save 5,000 lives each year in the UK. Identifying your own personal risk can be hard, as cervical cancer is caused by a sexually transmitted virus, and you only have to meet the virus once to be at risk of developing cervical cancer. Why would you take that risk?

@JohnnyMcGrathSaysFuckOff

Tipsy yes - I was threatened with de-registration from my GP practice, and with not having a GP, if I did not comply. As I have a long-term health condition which requires periodic referral to a consultant, and I was ttc at the time, I found this very coercive as I was afraid I would lose specialist help and also MW care in pregnancy.

I have read many similar stories on MN. Why do GP practices behave this way, and are there any sanctions if they do?

If you're unsatisfied with your GP, you can contact Healthwatch or your local screening and immunisation co-ordinator.

I did not mean to upset you, so sorry. However from a feminist perspective the project does not empower women to make an informed choice. The project from my view is about ensuring "little women" are compliant. We never hear the same and song dance about rectal, mouth cancers which can be caused by HPV.

Identifying your own personal risk can be hard, as cervical cancer is caused by a sexually transmitted virus, and you only have to meet the virus once to be at risk of developing cervical cancer. Why would you take that risk?

So again we ask, why isn't the HPV vaccination programme wider (for the entire population, not just teenage girls and young women), and why isn't the non-invasive HPV test getting more publicity? If HPV is the cause of the risk, why are we waiting to test for the cancer rather than acting sooner?

@lollylou2876

I was referred for a colposcopy after an abnormal smear and had the Lletz procedure.

I was Sexually abused, I explained this to the nurse, at the appointment, after traumatic cervical sweeps during childbirth. They didn't tell me of the adrenaline rush after the local anesthetic, I thought I was having a flashback and I has a full blown panic attack during the procedure. With little or no empathy from staff I was sent home. I had to stagger to a few nearby friends to calm down as I was unable to return home to my son in that state.

I am now left in a position where I have never been back to check for regrowth, or a smear, 5years on I know I need to go and it could be dangerous, but I can't mentally face it.

What options are there for someone in my position please?

Really sorry to hear that you had a bad experience at colposcopy.

Have you been contacted by a healthcare professional for a follow-up? It would be a good thing to have a follow-up, and you can talk to your GP about your options.

@Alyosha

I had a smear test 2.5 years ago which showed I had no abnormal cells and no HPV. Do I need another test in 6 months or can I wait another 2.5 years? Given the evidence that women with no abnormal cells + no HPV are at a very low risk of cervical cancer.

Hi
The current guidelines are that you should have smears every three years if you are under the age of 50 & every 5 yeas after that. So while having a normal smear and being HPV negative are reassuring, I think it would be a good idea to comply with the screening program.

I hope this is helpful

Tipsys I think we're on the same page (and it certainly wasn't you that upset me).

Assuming that women will accede to medical tests with a minimum of information is unfortunately endemic, as I discovered during my fifth pregnancy under a different trust from the other four. Turns out all those internal examinations weren't the only option, and many of them will have been for clinical convenience rather than necessity

@CoperCabana

I received a letter today suggesting I have a smear, but also a leaflet saying it was my decision. This is the first time I have seen such literature. Is this a new thing? I am in Bucks? I have had few sexual partners, and the vast majority of the time, I have used condoms including with my long term DP. I have a weird shape body and, as such, smears are difficult and painful. I want to understand the risk for someone who has very rarely (less than 10 times) had sex without a barrier.

Any medical test you're offered is always your choice to attend. If you've ever had sex, with a condom or without, you are potentially at risk of cervical cancer, because cervical cancer is caused by a sexually transmitted virus called HPV. It would be advisable to continue attending smear tests when invited.

@OurMiracle1106

I'm 28. Previously been treated twice for cin2 changes, my last appointment at colposcopy revealed some more abnormal cells but they've decided to leave them be and check in 6 months. If these cells keep coming back is there any other treatments available?

Hi
The fact that you have not been offered repeat treatment implies that your specialists are not unduly concerned. I cannot be more precise without knowing the details of your case but would suggest you speak to the Drs at your next appointment about what the options are.

a lot of low grade changes clear up without treatment so you may not need any further intervention

@MrsPorter

Identifying your own personal risk can be hard, as cervical cancer is caused by a sexually transmitted virus, and you only have to meet the virus once to be at risk of developing cervical cancer. Why would you take that risk?

So again we ask, why isn't the HPV vaccination programme wider (for the entire population, not just teenage girls and young women), and why isn't the non-invasive HPV test getting more publicity? If HPV is the cause of the risk, why are we waiting to test for the cancer rather than acting sooner?

Currently, the HPV vaccine is offered to girls under the age of 18. This is because it is most effective to vaccinate someone before they have come into contact with high-risk HPV. However, as you've noted, the vaccine could benefit women over the age of 18. At the moment, the Department of Health only funds vaccination for women under 18, and the vaccine is now being offered to men who have sex with men at sexual health clinics, who are aged 16-45. The Department of Health are reviewing the cost-effectiveness of including boys within the school-based vaccination programme.