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

(66 Posts)
RachelMumsnet (MNHQ) Tue 11-Sep-12 12:51:47

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.

RachelMumsnet (MNHQ) Thu 27-Sep-12 18:40:39

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

Q&A about cancer screening with Amanda Ramirez

RachelMumsnet (MNHQ) Tue 18-Sep-12 11:55:25

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.

HoleyGhost Mon 17-Sep-12 16:34:14

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.

smee Mon 17-Sep-12 11:11:38

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.

BelaLug0si Sun 16-Sep-12 16:51:55

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
10.1 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
• 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"

CoteDAzur Sun 16-Sep-12 15:54:48

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

YouBrokeMySmoulder Sun 16-Sep-12 13:47:18

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?

Asmywhimsytakesme Sun 16-Sep-12 13:23:51

Message withdrawn at poster's request.

MultitaskerXT Sun 16-Sep-12 07:44:38

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 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....

mielebosch Sat 15-Sep-12 20:45:59

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?

HmmThinkingAboutIt Sat 15-Sep-12 20:30:57

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.

CoteDAzur Sat 15-Sep-12 20:26:27

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.

LegArmpits Sat 15-Sep-12 20:03:12

Completely agree with all of that Hmmm - well written.

HmmThinkingAboutIt Sat 15-Sep-12 18:49:00

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.

HmmThinkingAboutIt Sat 15-Sep-12 18:06:50

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?

LittleCatZ Sat 15-Sep-12 15:33:34

MmeLindor thanks for bringing this in. I'd like to see text messages saying 'your results are ready' and I detest the 'if you don't hear then everything is fine' approach, especially after 2 pregnancies when I was tested so much (iron count, gestational diabetes, even an ECG!). Obviously with cancer screening you want a result and you might follow it up, but I think the text concept would be great for all tests.
My GP's surgery could even include their draconian rules for when I'm allowed to call for test results and the best number

MmeLindor Sat 15-Sep-12 14:03:32

Several posters have asked about the communication methods used, and the delay in sending patients results.

I was in Kenya this year and one of the trials that the CDC Kenya are doing was a trial involving the use of text messages to send results of HIV/AIDS.

The idea is that the results are logged into a computer, which automatically generates a text message to the health centre, who then contacts the patient to come in to get the results. Particularly in rural areas of Kenya, this is a way of getting the results quickly to the patient.In other countries, such as S Africa, this has been used for several years.

Is the NHS considering use of modern technology such as text messaging, Facebook and Twitter to encourage and facilitate cancer screening?

FairPhyllis Sat 15-Sep-12 00:12:27

I'd like to see very clear and explicit information about which groups of people each type of screening is appropriate for. For example, when I was a student and was invited for a smear test I wasn't told in the letter that if you hadn't had any sexual partners you didn't need to have the test.

I can see lack of clarity about who screening is appropriate for potentially being a problem with the generation of girls who have had the HPV vaccine - many may think they are totally protected against cervical cancer and may not attend screening. Any future invites for smears need to make it clear they should come to screening.

Secondly I'd like to see figures for the success rates of screening programmes - what percentage of cancers they pick up, as this would be helpful in deciding whether it's worth undergoing a procedure or not. For example, women in the US are encouraged to have an internal pelvic exam every year, when it's not at all clear to me what the justification for it is - it doesn't seem particularly effective in picking up things like ovarian and uterine cancer, yet physicians insist on doing it.

Thirdly, I'd like to know what scope there is for cancer screening beyond breast, bowel and cervical cancer - e.g. my family has a history of pancreatic cancer. If I walked into a doctor's surgery tomorrow and wanted to be tested for it, could that happen?

CoteDAzur Fri 14-Sep-12 21:48:21

Dad's side is important in cancer history.

In your place, I would go directly to a specialist. I don't understand the emphasis on GPs in the UK.

Teamthrills Fri 14-Sep-12 21:40:47

Cotedazur - my dad's mother had breast cancer at ages 39. I asked gp about my risk and was informed I'm at no greater risk than anyone else as it was on my father's side. Perhaps I should enquire about this again?

ledkr Fri 14-Sep-12 07:34:28

Tomski that would be great,i will pm you later

TomskiGirl Thu 13-Sep-12 23:28:06

@YouveCatToBeKittenMe you need to be referred to your nearest genetics centre by you GP and normally if you have 2 or more close relatives with ovarian or breast cancer. I am high risk and had my ovaries removed last year.

TomskiGirl Thu 13-Sep-12 23:24:08

@ledkr I am high risk Ovarian cancer and I had my ovaries removed last year aged 38. If you want to chat about it please pm me x

LittleCatZ Thu 13-Sep-12 22:04:27

I also saw a show about having an MRI that suggested these can detect cancer very early.
Amanda please can you offer a view on MRI and risks and benefits of this as screening for breast cancers?

LittleCatZ Thu 13-Sep-12 21:54:20

mielebosch thanks for the link on thermography, very interesting.
My mum was diagnosed with breast cancer around the age I am now (36). She had a large lump removed and got the all clear but it recurred and the cancer was very aggressive, she died within 6 months (aged 40) after the cancer had spread through her lymphatic system and caused lung spots and a brain tumour. It was horrific and my lovely GP (now retired) mentioned screening when I was pg so I said it might be something I'd consider in the future but I was bf for a couple of years and I've since seen the risks of radiation mentioned and have been reluctant to subject myself when I have no symptoms and screening could initiate cancer.
However, I do have the nagging doubt that early detection is important and much more treatable.
Amanda - do you have a view on thermography and is it available through a GP/on the NHS in the UK? I know I'll need to talk to my new GP but I suspect I might have a struggle to get screening at all, let alone be picky about what kind I get!

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