Q&A about cancer screening with Professor Amanda Ramirez - ANSWERS BACK

[RachelMumsnet]

What information do you think you need in order to decide whether or not to have cancer screening? The review on informed choice about cancer screening would like to know your thoughts.

The NHS is currently reviewing how it presents information on the benefits and risks of cancer screening, including screening for breast, bowel and cervical cancer.

As part of that review, Professor Amanda Ramirez, who is a Director of Informed Choice about Cancer Screening, wants your comments and questions about the information available for people invited for cancer screening.

What would make that information as relevant, accessible and comprehensible as possible? Please post your comments or questions here before the end of Monday 17 September. We will link to Professor Ramirez's answers from this thread once they're back.

There's more information on the Informed Choices about Cancer Screening website and you can add comments about cancer screening on their site, too.

When is the line between being able to make an informed choice and effectively being bully into a decision you don't want being crossed?

The whole set up and language used in smear screening atm is set up so saying 'no' and making an informed choice is extremely difficult. If you are going to the doctors, one of the first things you are asked is have you had one. If you are going for something else and do not want to be harassed about it you can't. This targeted stuff is putting off people visiting the doctor for other issues when they should be attending as they actually have symptoms. The emphasis is on well patients being worried rather than the sick patients who needs discuss a completely different issue which IS a problem rather than a potential problem.

Also, more efforts need to be made to make sure people know and understand the difference between diagnostic tests and screening - both within the profession and with the general public. Upthread there is a good example where a lady is saying she is displaying symptoms but the GP won't send her for screening because she is outside the age range and she shouldn't be worried. Their concern is more for people who are in a target group not for those who are actually unwell. Its upside down and wrong headed thinking especially where there is a family history concerned.

Then there is the fact that if there really is informed choice, why is it that the system does not allow for flexibility where you really can take yourself off lists and that you wouldn't be pressured by doctors who have targets to meet to get their funding?

The truth is, it doesn't exist in the current system; there are too many conflicts of interests between doctors who want to get patients to behave in the 'correct' way and patients who may have made an informed decision about the relative risks and find the whole process genuinely upsetting and distressing and it therefore affects their health in other areas.

The balance is wrong atm. Steps need to be made to make people feel they are making the decision rather than it being coercive. Atm, the way risk is presented has a very big influence on the decisions people make - relative risk and increased risk are often shown in biased fashion to get the right response.

So my questions would be:
How do you intend to show risk in an unbiased way that can be trusted and not used in a way to manipulate behaviour?
How do you reassure people that they can make an informed decision and they will not be harassed for making the 'wrong' decision?
How do you remove conflicts of interest - such as targets - to reassure people that they are making a free decision without the doctor being unduly coercive as they have funding to consider?
How do you intend to improve the system so people can genuinely opt out, long term, rather than having to renew it every so often which can cause distress and upset?
How do you intend to stop letters and literature which scaremonger and say stuff like "if you don't go for screening you are risking your life", which is highly emotive and not actually factually accurate for a number of reasons from both sides of the argument?

How do you intend to get people to know and understand the differences between screening and diagnostic tests. Both with the profession and outside the profession, so that those people who are most in need of tests go for them and get them rather than purely relying on screening which is only aimed at certain groups?

I've just read through survey on website.

Why are risks displayed in this format:
1 in 10 people will die.

and not:
1 in 10 people will die. 9 in 10 people will not die.

Statement one already has biased to manipulative people a certain way. Unless both sides of the argument are presented equally and without biased than there is never truly informed choice; only manipulated influenced choice.

Completely agree with all of that Hmmm - well written.

Does "9 out of 10 won't die" really need to be said? Even my 7 year old can calculate 10-1 in her head.

Surely the point is that 10% mortality rate is very high. Not that 9 is a larger number than 1.

Its the emphasis that you could die without a counter to it, that I take issue with. It means there is a bias in trying to help you make a decision; the idea that you could die and not the idea that you might not do.

So much of the way risk is presented and how it effects behaviour is subliminal. BBC1's Bang goes the theory did a very interesting study on this. Just by putting the word die rather than survive into statistics given to politicians affected decisions they would make on a theoretical situation. I'll drag up the episode if anyone is interested.

It IS really important.

Yes, two - no, three - really good posts there, Hmm.

I was just boggling at the so-called FAQs in Breast Cancer Screening. Nothing about the controversies over mammograms; nothing about radiation; nothing about false positives leading to unnecessary treatment for cancer.

Really? Those aren't frequently asked questions?

Hey dippywhentired
Ask for a BRCA test - a genetic test for breast cancer. I've just been through treatment and so well versed. The benefits of a mammo FAR outweighs the breast cancer...trust me! Radiation is not great for you: fact, however cancer spreads/it kills and its best to get an accurate diagnosis asap. I was lucky, I got it just in time thanks to me screaming and shouting for my GP to refer me to the consultant. So test is best! Diet is a big thing too....

Multitasker, can you get that test done privately?my mother had breast cancer at 38, I am now 37 and do worry about it but my gp doesn't seem remotely concerned, is this normal?

I was told that smear test results (or even the biopsy of a mole) during pregnancy would be highly unreliable because of pregnancy hormones.

You can have a smear test whilst pregnant but it depends on your individual history, what's going on with your pregnancy and the changes in hormone levels can make it more difficult to interpret the cell changes. I've copied the relevant part from the NHS cervical screening programme guidelines below and the link to the document. Note where it says mid-trimester, it doesn't say which one, so it's down to your HCP and you to decide if you want to have one.

doc no 20
"10. PREGNANCY, CONTRACEPTION, MENOPAUSE AND HYSTERECTOMY
10.1 Pregnant women
10.1.1 Cervical screening in pregnancy
? If a woman has been called for routine screening and she is pregnant, the test should be deferred.
? If a previous test was abnormal and in the interim the woman becomes pregnant, then the test should not be delayed but should be taken in mid-trimester unless there is a clinical
contraindication.
? If a pregnant woman requires colposcopy or cytology after treatment (or follow up of untreated
CIN 1), her assessment may be delayed until after delivery. Unless there is an obstetric contraindication, however, assessment should not be delayed if a first follow up cytology or colposcopy is required following treatment for cGIN, or treatment for CIN 2/3 with involved or uncertain margin status.
The colposcopist may wish to perform only colposcopy at a follow up appointment in pregnancy.
If repeat cytology is due, and the woman has missed or defaulted her appointment prior to pregnancy, consideration should be given to her having the cytology or colposcopy during pregnancy"

As a woman who's had Breast Cancer, I want to know why they don't offer people who are post treatment yearly scans to show any new growth?

Cancer's increasingly treatable if found early enough, yet I have had several friends find secondaries after it's too late for them to be treated. If found earlier their options/ outcome might have looked far brighter, so it makes zero sense to me not to have yearly CT or MRI. I know there's a threat from radiation, but I for one would happily take that (relatively small) risk, if it gave me earlier detection and so a chance of treatment. Is it simply cost related? If so, that's shocking.

Why do you have to wait up to eight weeks after an abnormal smear for a letter with the appointment for colposcopy? Why can't they just send out the appointment with the result?

Waiting so long for the date surely causes needless stress. It also makes it harder to plan work, holidays or trying to conceive.

The Q&A is now closed. Thanks for all your questions and comments. We'll be sending the comments and 20 questions over to Dr Ramirez later today and will link to her answers by the end of September.

We now have Amanda's answers back and the archived Q&A can be seen here:

Q&A about cancer screening with Amanda Ramirez