AIBU to consider not attending mammogram appointment

[SuperMoonIsKeepingMeUpToo]

Obviously if I decide not to attend I'll let them know but I'm interested in hearing opinions on this. I take my health seriously and normally attend everything going but this one I'm just not sure about as the accompanying leaflet informs me that:

'Screening saves about one life from breast cancer for every 200 women who are screened. This adds up to about 1300 lives saved from breast cancer'.

Great. But...

'About 3 in every 200 women screened every 3 years from the age of 50 to 70 are diagnosed with a cancer that would never have been found without screening and would never have become life-threatening. This adds up to about 4000 women each year in the UK who are offered treatment they did not need.

'Overall, for every 1 woman who has her life saved from breast cancer, about 3 women are diagnosed with a cancer that would never have become life-threatening. '

It is this risk of them finding and treating a cancer that would never become a problem I struggle with.

I'm 48 - our local authority is trialling extending the age range of women called for breast screening. No breast cancer in my family.

I have noticed over the years how the wording of the leaflets has changed. It used to be 'screening saves lives'

They had to change it because breast screening does not save lives overall. It does save the lives of women whose cancers are detected early and of course that is of immeasurable benefit to those individuals and their families. But breast screening hasn't reduced the overall death rates for any age group - the same total number of women die at the same ages; they just die of something else.

Screening is expensive. The cost of the programme is £34million per year and has run since 1988 so we have spent nearly a billion pounds at today's prices. I do wonder whether - if we had spent the same money on research over that time - we would have saved many more lives.

shiny and red thanks for answering!

Yes, I now decline smear tests (i.e. have opted out of the national programme) because the numbers don't make sense to me. Also, I found the NHS pushed smears in a way I personally found aggressive and unethical - for example, the leaflets did not at all mention the risks of false positives, and my surgery used to make appts for smears for me without my consent, text them to me, and then put a 'black mark' against my name if I didn't attend and threaten to de-register me. They told me I could not withdraw from the national screening programme.

When something is pushed so heavily I start to doubt the motives behind it, tbh -- which led me to do my own research and discover that screening is controversial. Personally I am in a low risk group for cervical and breast cancer (no family history, no issues, bf for nearly a year, never had any STIs, never had sex without a condom before DH etc) and due to a history of assault I find intimate examinations extremely distressing. So for me the risk-benefit calculation doesn't work.

I'm really appalled at people shouting at the OP over her questions. It is not unreasonable at all and I'm more worried about the people apparently swanning off to medical procedures on a regular basis without understanding any of the risks!

The thing that also adds to the bias is the women saying their life was saved by screening.

However the reality is that since we can't distinguish between a case which is a true life saved or a false positive there are actually a significantly higher number of women who think their life was saved compared to those who actually had their life saved. Few will go 'o well I had a false positive' simply because they won't know.

This distortion of the anecdote means that we should be particularly wary of perceptions over and above what the research actually bare out.

However the reality is that since we can't distinguish between a case which is a true life saved or a false positive there are actually a significantly higher number of women who think their life was saved compared to those who actually had their life saved. Few will go 'o well I had a false positive' simply because they won't know

Here here!

I am not anti-screening but I am anti-dishonesty. I don't know how screening evangelists get away with levels of paternalism and eliding the truth that would get you struck off in most areas of medicine. I think Red's earlier points about expecting women to do as they are told and just suck it up if they are harmed in the process (in a way that would never be expected of men) are absolutely right.

I'm the OP back again. Thanks for taking the time to reply although I do wish some hadn't. Many people understood that the post was intended to initiate intelligent debate but I do take exception to being told I am bloody stupid twitterqueen or that I knew my post was inflammatory and that it was weird breezydoesit. There were others but I can't be bothered to find them. You were so rude, even by AIBU standards. Shame on you.

Thank you to those who shared their personal stories, my heart goes out to you all. But, as redtoothbrush points out, you don't know that screening saved your lives.

I'm still not totally decided. The fact that if a malignancy is detected there is a 3:1 chance that it would never pose a threat to my health and would never have even been detected without the mammogram still makes little sense.

Thank you particularly to the PPs who got it and defended me. I was certainly encouraged that the people who understood my position were those with medical knowledge / training and not just relying on emotional anecdotes - shinynewusername, limitedperiodonly and the pp who worked in breast screening amongst others. I'm glad I'm not the only one who does their research and doesn't blindly go along with things.

I understand your point. I had breast cancer last year and read a lot about it so I get what you're saying about people being over- diagnosed and over- treated.

However, if I were you I'd take the opportunity to be screened and if they find something you can decide then what to do. Chances are they'll find nothing - but there might be something serious or something that you could have monitored without getting treatment now.

The Cochrane summary is worth reading. Yanbu op. You're absolutely right to look into this.
nordic.cochrane.org/sites/nordic.cochrane.org/files/uploads/images/mammography/mammography-leaflet.pdf

Two things that have been linked to breast cancer are radiation, and breast trauma. So squeezing the breasts between two metal plates and irradiating it every three years does make me question whether screening is a good idea. And that is aside from the statistical likelihood that one is more likely to be harmed than helped by screening. I also wonder like shiny, whether more lives would have been saved by putting all that money into research.
It is a very difficult choice to make, and I am still undecided.

When I've read up on screening programs I did find it incredibly revealing that the real number to look for, was not how many people dying of that type of cancer did it stop, but actually how much longer people ended up living as a result of screening. As well as the figures for false positives. The point being, as others have pointed out, that the same people just ended up dying of something else instead.

Its a figure that tend not to be terribly transparent and there is often only a focus on cancer which is misleading. Obviously some people have a shelf life that they can't avoid. If you are going to die at X point anyway, you might essentially prefer to 'do nothing' as you can't alter your fate ultimately rather than spend that time having treatment which won't gain you an extra day. Its frustrating there isn't better clarity.

There was in an interesting study mentioned in McCartney's book that suggested that when there was better clarity uptake of screening was actually lower and this was something that posed something of an ethical dilemia to those wanting to maximise uptake of this particular type of screening.

As I said before - there is no right answer. It just makes it all the more depressing when you realise that GPs have targets for screening as this undermines this principle.

The two books I mentioned upthread both cover the pitfalls of screening if my memory serves me correctly. McCartney's book covers more about it than Goldacre's though. Its been a while since I read them.

Thanks for posting the link to the Cochrane summary. It was definitely worth reading. I have always turned down mammograms, but a small part of me wondered whether that was the right thing to do.

This is despite my grandmother dying of breast cancer, but it's important to note that when she found a lump she did nothing for at least two years.

However, if I were you I'd take the opportunity to be screened and if they find something you can decide then what to do

Therein lies part of the problem though. Armed with the 'knowledge' that you have something that might be dodgy and the recommendation is that you have further treatment, you've already opened Pandora's box which makes it harder to do nothing. And there still may be nothing wrong with you and this 'knowledge' might therefore be worse than useful.

Plus you now have the added thing of worry if you do decline treatment which is part of the equation.

It's your body and therefore your choice. Do you have an OH or DC though? How would this affect them?

No family history here. Had mammogram at 49 last year and they found (after they biopsied) very active flat cancer that I wouldn't have felt for several years. Guessing triggered by long history of foul parents and resulting stress. It's not until you're waiting the results of a biopsy that you realise how much you want to live. Personally I'd go for peace of mind. Have had stunning treatment/care btw. Could argue that there's more reason to go if you don't have family history and can't feel any lumps as you get lulled into a false sense of security.

YABU. My mum was recently diagnosed with breast cancer, having not been for a mammogram for about 10 years ! Crazy I know! By the time she was diagnosed it was stage 3 advanced and required a mastectomy and chemotherapy. As a result, at 31, I am not being monitored annually with mammograms from age 35 every two years with manual screening in between. I will NEVER miss a screening. Not only for me, but for my own children. Don't take the risk- would you fail to attend for a smear?

when I did the research it was very clear to me that on aggregate mammograms do more harm than good and for that reason I didn't attend my appointment.

I understand the knee jerk response, surprised at the lack of critical thinking on the thread but pleased to see the calm rational posts

Zombie

Generally, whole public screening programmes are worse than doing nothing, which is why so few are run.
The trouble with 'decide what to do when you know' is that no-one can tell if it is harmless or will grow too slowly to affect your life and you will always have the fear.

Also don't need to be so harsh on GPs and Consultants - they see and support those that don't get good outcomes. Strangely they seem to want to protect people from going through that as much as possible....

YANBU if you have none of the risk factors.
Do you have a family history of breast cancer? What age did you have children? Or not? What age did you start periods? Do you smoke? Have you taken hormonal contraception for many years? Are you overweight? Have you had radiation exposure? Do you drink a lot of alcohol
If you have even one of those risk factors I would get it done, just to be on the safe side. Rather be safe than sorry.

Yabu my aunt almost missed her appointment and is now glad she went. They found stage 2 cancer. Now thankfully she's being treated

mrwalkensir

GPs are not supposed to do one thing over another based on their own beliefs. They are ethically bound not to bully or coerce patients into a certain treatment. Their role is to support patients decisions and to give them unbiased information to reach that decision.

The trouble is when they are given targets to achieve, is that this undermines this position of being unbiased. It creates a conflict of interest. They are being asked to deliberately influence patients a particular way rather than merely present facts and then allow patients to make up their own mind. This encourages stronger or a more aggressive approach.

Fortunately, there are GPs that are ignoring these targets. But sadly not all. It is a fault of the government for creating the situation. But individual doctors are also not following ethics if they are more aggressive in their approach to meet targets - they are putting other interests ahead of the individual patient.

" However, if I were you I'd take the opportunity to be screened and if they find something you can decide then what to do

Therein lies part of the problem though. Armed with the 'knowledge' that you have something that might be dodgy and the recommendation is that you have further treatment, you've already opened Pandora's box which makes it harder to do nothing. And there still may be nothing wrong with you and this 'knowledge' might therefore be worse than useful.

Plus you now have the added thing of worry if you do decline treatment which is part of the equation"

This is certainly my experience of being recalled. I went in intending to undergo the mammos and u/s and nothing else. There was no way I wanted to make a decision about a biopsy on the day and did not wish to have anything like that done. Having needles stuck in my boob on the offchance was 'no go'.

Once I had seen the screening result, I would have gone the whole route. As you say, it has opened a Pandora's Box. You are set on a road and the only way is to find out what it is and that it is not cancer. I would have let them stick needles in me or anything just to know the result. This was despite me being almost certain that it was only a hormonal blip.

(Going for mammography reminds me of the film "mousehunt" with Lee Evens, where they destroy the entire house in the effort of catching a single mouse.)

(Going for mammography reminds me of the film "mousehunt" with Lee Evens, where they destroy the entire house in the effort of catching a single mouse.)