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.

I'm too scared to get my smear test done. I'm 32..

Helo, I am sure my second ever test and first since having my son nine months ago.
1)will it hurt more than the first? I had mild to painful cramps the rest of the day last time.
2)if I asked at the time of booking would it be possible to get a coil fitted at the same time to save having my legs up twice...
3)as a woman in my late twenties, could I pay to get the hpv vaccine? Would it work?

Sorry for the rushed typing, feeding baby.

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?

So by my maths, this means that 99.9% do not benefit from attending cervical screening.

Shit those are stark statistics (assuming they're correct - I'm on my 2nd beer and don't trust my maths).

Loads of women, for all sorts of reasons, find smear tests really traumatic.

It's very common for women to undergo futher tests and treatments following an abnormal smear - just to be on the safe side - yet most abnormalities resolve themselves in time from what I have read. All of these further tests and treatments carry risks.

What reassurance can you give that women are fully informed of the risks of screening and that the impact on women's mental health is factored in to the risk/benefit calculation of this screening programme?

My daughter is having her 2nd injection against HVP.How long does this cover her for?Then what, as I understand that the injections are not so effective for adults but no one can tell me why.

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.

Are there any statistics on women who suffer psychological harm as a result of screening/colposcopy?

Why does it not tell women how they can opt out of being screened in the literature?

I no longer have a GP as being constantly contacted re both screening and general screening under the GP Contract re CQRS too distressing. You can no longer just see your GP when you ill you are always nagged about screening of some description.

I am interested in JohnnyMcGrath and Tipsycat's questions (having received a letter and attempted unsuccessfully to opt out today). Both my GP surgery and the phone number on the leaflet claim that they don't have the ability to opt me out.

Would you agree that informed consent requires clear presentation of the statistics, discussion of the risks of false positives and over-treatment as well as the benefits of the programme, and that deciding not to participate should be treated as a valid and reasonable response, with a clear pathway to opt out? The language used throughout the literature, in news stories and in my experience by many health care professionals is very much geared towards the "correct answer" being that everyone should attend - e.g. on my letter today "the quick test that could save your life", "you are now due", "please call the number above to arrange an appointment". How does this fit with informed consent?

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?

This chat is a great idea and huge thanks to Jo's Trust!

I had CIN3 and LLETZ in 2013. I had a smear test a year later (2014) at my GP surgery which was clear. I reverted to the 3 year recall. I was worried about this so I paid for a private smear and separate HPV test roughly in the middle of the 3 year period, so in 2016. The results showed CGIN and high risk HPV was present. I was referred back to the NHS who did LLETZ and a cone biopsy in May 2016. I had a follow up smear at the GP surgery 6 months later (Nov 16). I have recently received a letter saying the cells appeared normal but no HPV result. Apparently the lab didn't test the HPV! I am hoping for the result soon. Whatever the result I have been asked to return for a smear in November this year.

My question is...is CGIN more serious than CIN and does it mean I am more likely to get cervical cancer?

I would also REALLY like to know whether it is possible for abnormalities to be missed when a smear is carried out?? I'm wondering why the GP/nurse smear result in 2014 came back normal but yet the private result showed CGIN and high risk HPV in just 18 months.

Thank you!

You should make a formal complaint. Also consider complaining to the GMC. You were screened without your informed consent so effectively assaulted. You cannot removed/deregistered for not agreeing to have a smear. Take a look at the web site for Womenseyesonly. This a common problem in the UK. Also read Dr Margaret McCartney book The Patient Paradox it's on Amazon Kindle as well as available in soft back. Dr McCartney is a Glasgow GP. I have concerns about Jo's Trust pushing a smearforasmear. They amongst along with other health charities push their agenda to get funding grants and donations. So this campaign will generate them income by keeping their media profile high. I see nothing on the Jo's Trust about informed consent for screening, risks of psychological harm or actual facts that in fact over 99% of women will not benefit from screening. This appears to me to about keeping a high media profile to get funding rather than about ensuring have actual statistics and unbiased facts so they can make an informed choice. I hope the well known Gynae Oncologist from UCLH who is taking part in this Web chat gives us some answers and does not collide with Jo's Trust in what seems to be a yearly income generation scheme for them to make financial gains by having a high media profile.

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.

I had cervical cancer 13 years ago, requiring a radical hysterectomy. I'd just like to record my thanks to Jo's Trust who provided a great deal of online support and information while I was going through it, including the excellent website forum.

over 99% of women will not benefit from screening

I think this figure is a red herring - I have "benefited from" medical tests which gave me a clear result.

I'm interested in pencilsinspace question.

Also agree with tipsyscat as I would like to opt out of the letters and reminders.

I have no history of cancer in my family and am aware that cervical cancer can only develop after catching hpv from sexual contact. Myself and my husband have only been with each other so there is no reason for me to have a smear test. I have to ask why would someone like me or virgins be asked to have smear tests? I believe it is completely unnecessary. Thank you.

Thanks to Jo's Trust for this important chat.

I was wondering, if I were to get cervical cancer in between smears, I don't actually know what the early signs and symptoms are? What can I look out for?

Hi,

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

I had very irregular periods from Jan-Apr last year (had 8) and saw my GP as I was trying to book a smear which was due. Finally managed the smear but had to stop as nurse said there was so much blood.

GP referred me to Gynae where I had an endometrial biopsy and a colposcopy.

The colposcopy was in July 2016 and I have had 3 extremely light periods since then.

I am 50 so I know the menopause is imminent. Just wish it would hurry up 😃

Just wanted to say that I like your website and there was so much useful information while I was waiting for my treatment and helped ease the anxiety.

The recent changes to the cervical screening invitation letter are of great concern to me, having had severe abnormal cells and subsequent treatment which saved my life. I worry that already 1 in 4 women don't attend smear test appointments and by removing the phone numbers to call to book from the letter and making the wording softer "Your Choice" even less women will attend. Do you agree? Would you be happy to sign and share my petition below to get the wording reviewed please?

www.change.org/p/phe-screening-cancer-is-not-your-choice-change-the-wording-on-screening-invitations-atyourcervix

Thank you for your support! Let's get women attending their smears!
Regards,
Samantha Walsh (aka Wandering Blonde on Twitter)

I am with McGarth, Tipsy and the others. Why is there not an opt out form with letter and biased NHS smear information? I have heard that big money is involved in screening and that an 80% uptake is needed to make it financially viable?

Why is oral, mouth, throat cancer and rectal cancer NOT given the same high media profile? According to Cancer Research UK the incidence is roughly the same as cervical cancer. You do not see women panicking about these cancers. They a long with cervical cancers are rare cancers.

I am afraid I find the Jo's Trust Campaign insulting to women. We are not cattle to be herded. We need unbiased information and very easy access to opt out. We should not be hounded by GPs and Practice Nurses.

Women should not be having to avoid seeing the GP or de-registrating from the GP due to the screen programme.

I suspect the issue many GP/Nurse are unaware of the unbiased facts and figures and have been brain washed a long with many women.

Quite frankly the Jo's Trust smearforsmear is a disgrace and I too see no no unbiased information on screening on their web site to enable women to make an informed choice. The campaign is scaremongering and I agree with Tipsy its to keep their profile high to keep their income generation flowing.

Equally the national screening is a disgrace too for the same reasons.

Why are oral cancers and rectal cancers not given the same media coverage? Even if there is no suitable screening programme there could a watch for symptoms campaigns.

Failure to explain the screening programmes when registering with a GP and failure to allow easy opt out is a breach of the Data Protection Act. If the google a GMS1 form there is no consent given by patients to take part in these programmes when they register with a GP. Although the screening programmes are covered by Section 251 of the Human Research Act this does not override patients right to opt out or "fair processing" under the DPA.

Can you explain why the screening programmes fail to adhere to "fair processing" under the DPA?

How long should I wait after giving birth before getting a smear test? I've read there are higher incidences of false positives if it's done too soon and I want to avoid unnecessary worry.

SamanthaWalsh. You are aware that CIN changes can clear up on their own and there is a huge amount of over treatment of CIN which can cause psychological harm, premature birth and the need for C Sections. We should nor be herded like sheep. Women need to make an informed choice based on unbiased facts otherwise the smear test could legally be assault. FACT. At the moment, as someone pointed out above, the screening programmes may not unlawfully as they may be breaching "fair processing" under the Data Protection Act.

PS Even CIN3 can clear up on its own. You cannot prove it saved your life. Equally as previously pointed out rectal and oral cancers can be caused by HPV. We do not have the pressure and coercion about those unsexy cancers.

Claire and Adeola are now online and ready to answer your questions. Welcome to mumsnet...