AIBU to be really pee'd off about the Sophie Jones petition?

[creampie]

This poor girl appears to have died from cervical cancer following delayed diagnosis. She apparently presented at her GPs surgery asking for a smear test, but was denied one on the basis that she was too young for it to be warranted. Since her death, her family are campaigning for smear tests to be offered to all girls from 16 up.

When someone dies, I understand families are desperate to make that death meaningful, and campaigns like this seem like a good idea, but there are so many holes in this story that I'm amazed it's made it anywhere near a newspaper. It's also floating its way around Facebook.

Firstly, smear testing is incredibly unreliable in under 25s, to the point where any results are pretty meaningless. Secondly, it's not a test for cancer, it's a test for abnormal cells in a population with no symptoms. Anyone who has symptoms, as Sophie did, should be offered something completely different (I'm not sure whether she was offered this or not, which is something they would have every right to be angry about if not) in order to look for cervical cancer. Why has no one pointed this out to the campaigners? Or if they have, why is there a petition for this?

I'm not sure whether I'm more cross about the 130,000 odd signatures from people who are advocating action on something that they don't really understand, or the appalling media mis-reporting, which suggests smear tests would have helped. Honestly, why do people think that their opinion should have any bearing on health policy? I don't think my opinion should have any bearing on agricultural policy, for example, because I know naff all about it. Why is health so different?

AIBU to be cross with the media and the starters of this campaign (although slightly more sympathetic with these) for starting a campaign based on very little evidence, knowing that gp surgeries across the country are now going to be inundated with requests from the worried well?

YANBU. It's nice to know I'm not the only one thinking this.

I dont really understand the harm that testing undet 25s can cause? Unreliability?

I mean if it can detect abnormalities then why not?

I suppose the only reason I can think of is cost.

Because a lot of abnormalities in young women will resolve spontaneously - but unnecessary treatment of them carries a risk of future infertility/miscarriage/still birth superstar.

YANBU

Testing in younger women is not advised for the following:

Most cell abnormalities in women under 25 will resolve of their own accord and are not warnings of something more sinister on its way.

Avoidance of stress and worry caused by identifying the abnormal cells as above and investigating them.

Smear testing can weaken the cervix and lead to an increased likelihood of pre-term delivery when the woman goes on to have a baby.

Interestingly, in Scotland they start testing at 20 as opposed to England's 25, yet England has a lower incidence rate AND lower mortality rate from cervical cancer.

Meanwhile in the Netherlands and Finland they don't start testing til 30, and yet they have some of the lowest mortality rates for cervical cancer in Europe.

Here's an interesting link explaining why the decision was taken to start screening from 25: www.cancerscreening.nhs.uk/cervical/faq08.html

As I've mentioned before, the petition is not about routine screening. It's about making smears available to those women under 25 who may need them. There is a difference.

What does "who may need them" mean in this context? Because women with symptoms don't need a smear - they need appropriate investigation. I'd sign a petition asking for that.

Smear testing can weaken the cervix and lead to an increased likelihood of pre-term delivery when the woman goes on to have a baby.

Not exactly true - the smear itself doesn't harm the cervix, or cause it to weaken. It's treatment that can cause damage to the structure of the cervix, especially where large biopsies or areas of the cervix need to be removed.

I wouldn't want any women to think that having a smear puts them at risk of future pregnancy problems.

I was referred to colposcopy at 19 because of abnormal cells picked up during a smear. I had had post-coital bleeding but wasn't concerned about going to the GP as had been going for smears since I became sexually active at 15. I'm in Scotland so no issue with this.

The odder thing is that they stop testing at 64 in England (60, I think, in Scotland, though I could be wrong) when the majority of cervical cancer cases occur in older women. There may be a good reason for this but I don't know what it is.

Cervical cancer is extremely rare in the under-25 age group and almost unknown in the under-20s, so Sophie Jones was very very unlucky.

If there is a take-home message in all this, I think it's probably to remember that the virus that causes cervical cancer is transmitted during unprotected sex, so if you are sexually active, then you should use a condom.

I can understand why they have started this campaign. I went to the GP at the age of 20 because I had started to experience bleeding between periods and after sex. A smear test was ruled out because of my age at the time.

A year later it was discovered I had cervical erosion, but it took a long time and many appointments just to discover this.

The test should be done as soon as a girl becomes sexually active. If they won't do it, pay for it, it's £100. It's appalling also that Scotland does testing at 20 and England start at 25. Considering 80% of the population carry the HPV virus, I definitely think the earlier the better.

Colposcopy (looking a the cervix with a microscope) is a quick and easy test that can immediately show abnormalities. That's how I was diagnosed with a 4cm tumour three years ago. I don't know if its the media reporting it more or not but there seems to be a huge increase in young girls dying from this awful disease. I'm on a support board, and there seem to be so many more, so anything that's likely to reduce that should be done.

hackmum cervical screening only ceases at 65 when the 3 previous smears have been normal.

If there are any abnormalities or changes then she will still be followed up.

I seem to remember that a while back smears were done from 16 (or at least it varied depending on where in the country you lived). I have certainly had them from 16 despite not being sexually active at that time and they have kept raising the age for precisely the reasons you state that in younger women you get a lot of false negatives.

Despite having never had an abnormal smear test I have had bleeding of the cervix and went to the doctors and got a hospital appointment within a matter of days because they suspected cervical cancer.

In my mind the two things are unconnected. If you have symptoms go to the doctor. I understand why as a family member you would want to do everything in the world to stop people suffering as you have but all the testing in the world just won't pick everything up. My heart goes out to them tough it really does, in the couple of days I waited for that hospital appointment I don't think I've ever felt so helpless and grim (luckily it was a reaction to a contraceptive and nothing bad).

*sorry, false positives

Here are the mortality statistics for 2012 by cause of death shonajoy.
www.ons.gov.uk/ons/publications/re-reference-tables.html?edition=tcm%3A77-325289
Deaths from cervical cancer by age band as follows:
15-19: nil
20-24: 2
25-29: 17
30-34: 25
35-39: 46
5 year bands above that vary around the 60-70 mark.
Total for all age groups, 786
Figures are also available for previous years.

By comparison, deaths due to ovarian cancer were 3,648 - dominated by women aged between 60 and 89.

The problem is the number of people who don't know the different between screening and a diagnostic test.

Its clear this girl was possibly let by someone failing to identify the symptoms and what investigations were appropriate in her case. This is the issue not screening; why are women of a certain age being denied investigations when there appears to be some kind of problem?

Lets also not forget that screening leads to a lot of people who have abnormal cells being treated, who would otherwise never develop cancer and that screening itself is not infallible. There are women who go for regular screening but develop cancer quickly and are identified outside the screening programme as a result.

Screening is not a magic solution, and it does my head in that people think it is and mistakenly believe that there are no drawbacks or side effects to it. It just reflects on a lack of understanding about the limits of screening and a dependence on it, rather than really looking at what other issues may be present. There is a desire to have a simplistic solution to a complex problem which deserves much more thought and multi-faceted approaches.

I do feel that directing energy towards going down this route is therefore somewhat misguided and could have been better focused or thought about. It only serves to add to the lack of understanding and to increase this idea that screening solves everything.

This wasn't the only way they could deal with her death in a positive way and to highlight and increase awareness of cancer.

If a petition could have been put to better use calling for a more effective strategy then YANBU