Q&A on cancer screening with Professor Amanda Ramirez
We were joined by the Director of Informed Choice about Cancer Screening, Professor Amanda Ramirez, to answer your questions about cancer screening, family history, mammograms, smear tests, and more.
Professor Ramirez is a qualified psychiatrist who specialises in the management of psychological distress among those affected by cancer. She is author of over 100 peer-reviewed scientific publications.
Q. MieleBosch: What do you think about thermal imaging for breast cancer screening, since it involves no radiation and seems to be more effective? There's something about it here, but a few people have said they are concerned about radiation.
A. Professor Ramirez: Screening technology is advancing rapidly and, while it is for the NHS Cancer Screening Programme to determine which technologies are effective, information has a vital role to play in making sure that people are informed about the particular test they are considering. We are currently seeking views on how that information should be presented, and we would love to hear what you think here.
Q. HmmThinkingaboutit: What's the line between being able to make an informed choice, and effectively being bullied into a decision? If there really is informed choice, why does the system does not allow for flexibility where you really can take yourself off lists. Is this to prevent being pressured by doctors who have targets to meet to get their funding? 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 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? And how do you intend to get people to know and understand the differences between screening and diagnostic tests?
A. Professor Ramirez: Thanks - that's a lot of questions! Our aim is to develop information that is balanced and comprehensive, and to make clear from the offset that not going for screening is a reasonable choice to make.
We will build directly on the evidence for benefit and harms and work with experts to ensure the pros and cons are expressed in a way that is even-handed and unbiased. Importantly, the information will focus on enabling the public to make an informed choice, not promoting the uptake of screening.
Educating the public and also professionals about the fact that screening is not intended for those who have symptoms is a big challenge. If you have symptoms, you should seek help from your doctor. This is different from using tests to detect cancer before symptoms occur. We'll make this clearer in the new information leaflets, but in the long-term we need a broader communication strategy to make sure that people with symptoms seek help and that people that don't are able to consider the offer of screening based on what matters to them.
Q. CoteDAzure: It'd be good if I knew what elements of my family history would warrant demanding screening tests. There were many cases of different types of cancer on one side of family, and all late onset. Does that mean I should be regularly screened for all?
Q. Youvecattobekittenme: My mum died from ovarian cancer, and I'd like to know who Icontact to have screening. I've mentioned it to a GP but they didn't seem to think it was necessary.
Q. LittleCatz: My mum was diagnosed with breast cancer around the age I am now, which is 36. She had a large lump removed and got the all clear, but it recurred and the cancer was very aggressive, she died within six months (aged 40). The doctor's mentioning screening to me, but 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, early detection is important and much more treatable. Do you have a view on thermography and is it available through a GP or on the NHS in the UK? Can you offer a view on MRI and the risks and benefits of this as screening for breast cancers?
A. Professor Ramirez: All three of you raise the important point of the impact of family history on approaches to screening. In some cases, having a family history of cancer can increase your risk, and there are specific arrangements in place to ensure that people have these risks monitored. For example, women with the BRCA1 or BRCA2 gene. There is information on family history and cancer screening on NHS Choices. If you have a family history of cancer and you are concerned, you should contact your GP.
Q. Nananaps: I'd like to ask about the reporting process. Once the screening has been carried out, how long until the results are given to the patient? Also, how are those results communicated?
Q. HoleyGhost: The long wait for results causes so much anxiety. Is the harm this causes taken into account?
A. Professor Ramirez: You both raise an important issue. We understand that the very fact of being invited to take part in screening can cause worry, and can result in people having to consider issues that they haven't before. While cancer screening has benefits in that it can reduce your chance of dying from cancer, we shouldn't discount the psychological impact that waiting for results can have. It's therefore really important that information on cancer screening sets out how long people will have to wait for their results, and how those results will be received. If you are worried that you should have received results and haven't, then do get in touch with your GP.
Q. MmeLindor: I was in Kenya this year and one of the trials that the CDC Kenya used involved the use of text messages to send results of HIV/AIDS. Is the NHS considering the use of modern technology such as text messaging, Facebook and Twitter to encourage and facilitate cancer screening?
A. Professor Ramirez: I understand that delays to receiving results can be extremely upsetting. That's why it's really important that clear information is provided on when you can expect a result, not least so you know to follow up if you think your results are late. The NHS has done a lot to improve the speed with which people get results in recent years. You can find out more on the NHS Cancer Screening Programmes website here.
Q. LadygoingGaGa: I've had abnormal smear results now for the last three years, with mild and borderline changes shown. On the last occasion, even I could see the area of change on the monitor. I have been left more confused and worried as a result of the screening process. I have been to the GP and expressed concern, to be told, we will just keep you on six monthly smears until you get a normal result. Who do I go to now for answers?
A. Professor Ramirez: I'm sorry you've found the process confusing. Stories like this are exactly why we need to get the information on cancer screening right. It's difficult for me to comment on your individual case, but I would suggest that you get in touch with your GP and ask for clarification.
Q. Mielebosch: Why on earth does the NHS still insist on mammograms? Why are regular doses of radiation to healthy breast tissue considered a good idea, when there are other ways to screen for cancer? When caution is exercised about dental x-rays, why such a cavalier attitude to x-rays to women's breasts?
A. Professor Ramirez: My area of expertise is not the effectiveness of different screening technologies, so I am not best placed to answer this. You might be interested to know that there is a review underway looking at the NHS Breast Cancer Screening Programme which is due to report in the autumn. You can find out more about it here.
Q. Asmywhimsytakesme: I didn't even know you could have a smear test when pregnant. Is this right?
A. Professor Ramirez: The NHS Cervical Cancer Screening Programme suggests that if you have a normal smear history then it's better to wait until about three months after the delivery of your baby before you go for cervical screening. Your doctor will be able to advise you on when it's appropriate to have a smear test.
Q. MTBMummy: How do I go about requesting screening if I'm not a target group? And preferably not going back to my GP.
A. Professor Ramirez: Bowel cancer affects all age groups, but is more common in older people. If you still have symptoms then you should go back to your doctor as soon as possible. Explain to them that your mother died of bowel cancer and that your symptoms have not gone away. If you are not happy with the response, then you should consider asking to see another doctor.
Screening is only for people who have no symptoms. Screening programmes are only implemented for specific groups in the population, who are deemed most likely to benefit from it. Other groups may not get the same benefit, because the technology may not work as well for them, or because they are at a lower risk. If you have symptoms that you think might be cancer, then you should see your doctor and explain your concerns.
Q. Smee: As a woman who has had breast cancer, I want to know why they don't offer yearly scans to people who are post-treatment to show any new growth. Cancer is 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 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?
A. Professor Ramirez: Screening programmes normally apply to people who haven't already been diagnosed with the cancer in question. If you have been diagnosed and treated, then your doctor should advise you on what form of ongoing monitoring you will need. This will depend on the risk of your cancer returning.
Q. VenetiaLanyon: When should we start having regular mammograms, ideally? I am over 40 and am paying to have them annually, although am worried about the radiation thing - am I being sensible?
A. Professor Ramirez: The NHS Breast Screening Programme provides breast screening every three years for all women aged 50 and over. The programme is now phasing in an extension of the age range of women eligible for breast screening to those aged 47 to 73.
For eligible women, the decision about when to start having regular mammograms is a personal one. That's why informed choice is so important - the review into informed choice is considering how best to explain and present the potential harms and benefits of cancer screening to support individuals in making their decision.
Q. FairPhyllis: I'd like to see more explicit information about which groups of people each type of screening is appropriate for, since I feel like it's unclear. For instance, there's now a generation of girls who have had the HPV vaccine, and many may think they are totally protected against cervical cancer and not get screened. Secondly, I'd also to see figures for the success rates of screening. Thirdly, I'd like to know what scope there is for cancer screening beyond breast, bowel and cervical cancer - eg 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?
A. Professor Ramirez: Thanks, all good points. In developing the new information for the screening programmes, we are committed to being clearer about which groups would benefit from attending screening. We will be laying out the size of benefits of screening, as well as the downsides, so the public can make an informed choice as to whether they want to take up the invitation to be screened.
We are working with experts on how to communicate this kind of complex risk information to the public. We are also seeking input from members of the public on whether we are expressing these data in a way that is comprehensive and meaningful, and would welcome your views.
There is an expert advisory committee that exists to advise the NHS on when it is appropriate to introduce a new screening programme. Unfortunately, there are relatively few cancers where effective and safe screening tests exist. At the moment there is no effective screening test for pancreatic cancer. Researchers are working hard to identify new ways of screening for cancer so that it can be identified before people get symptoms.
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