Has anyone decided not to go for a routine mammogram?

[hattie43]

I'm curious to know . I have mine next week and will attend but last time was a nightmare as I was recalled and health anxiety went through the roof . Luckily no cancer . I was reading that about 30% of women don't attend Apparently mammograms don't pick up everything and aren't foolproof , but surely they are better than nothing .

@Alphabet1spaghetti2 you made unsourced accusations about me. Now you are declining to provide evidence. Until you do I am perfectly happy for others to read my own scientifically based posts for themselves and make up their own minds. This last post of yours had no content whatsoever

@EmmaEmerald I am also very sorry about your dad. I was moved to contribute to this thread originally because I knew of a genetic test that allows some breast cancer patients to skip follow up treatment very safely. It has recently been validated in its first Phase 3 trial.

My hope is that further genetic tests will identify other classes of tumours including those sad cases where multiple metastases are inevitable. In those cases patients could choose treatment focusing on comfort and quality of life if preferred. But that is some way off.

@poetryandwine my last post to you had content and was a full reply to you. If you did reread, you would have found the answers to your own questions. The evidence you require is within this thread - should you choose to read it calmly and fully.
Perhaps you would like me to re post all 21 pages for you?

Again- if you want to a thread that states why you went to screening, please go ahead and make that thread. It’s not hard. This is a thread asking why some of us have not attended screening, those of who’ve posted why we’ve not attended have been very patient and polite, so please, go and take your anger and fever to another thread. I am sure it will help some people somewhere, but it doesn’t belong or help here.

My only question, @Alphabet1spaghetti2 was about where I bullied anyone. Still can’t find it, unless one counts calling someone out on changing other people’s language as bullying. With your claims to understand science you surely know that in our field the burden of proof lies with the person making the assertion. That would be you. But Iam not worried because I don’t think anyone is taking you seriously

I@Alphabet1spaghetti2 I think you may have me confused with someone else. Until you started changing other people’s language I had no concern with you. I only came on to post about some genetic research MumsNetters with varying perspectives on screening may find interesting.

@poetryandwine I am not claiming anything to do with science. All I did was post the links to the science. That’s not claiming anything.
I have not changed anyones language either, that’s something you are doing all on your own.

Please go and and put your aggressions elsewhere. Make your own thread about your passion for the screening service.

What passion, @Alphabet1spaghetti2 ? I’ve never claimed one. I have repeatedly supported each woman’s right to choose fir herself. Though I did post above very clear examples where you changed language. I’ll need my computer to donit again so I can’t be bothered until morning

@poetryandwine just re read your own posts. You obviously have a passion for the screening and treatments and advances. Go make a thread detailing why people should attend. Use that passion for a positive purpose in life. Who knows what may happen as a result if you did, at least you will have tried in a thread with different purpose.

You really don’t come across as being supportive at all, when it comes to the right to choose.

I’m considering going this route once I’m eligible. People love to talk up the positives but the negatives are swept under the carpet. There are undeniably some women that get unlucky and be over treated for cancers that would never have caused them harm in their lifetime.

It’s an optional cancer screening and everyone should have the right to make decisions about their body without being made to feel guilty.

Jennifer I was really nervous before my mammogram. I am not minimising pain - that's why I was nervous as I can be a right wuss and don't like smears although I have them of course.

It was really nothing more than a three year old 'squeezing'your hand. I asked the radiographer (mammographer? ) how many people actually found it unpleasant and she said it was really rare, like less than 1 in a hundred in her experience, but that the amount of first timers that were nervous and worried it would hurt was far higher. I have big boobs if that's relevant.

Gosh, this thread has taken off since I first posted. Some observations after catching up...
Again, this was a thread started for people to share what they considered their reasons for not taking up breast screening and many posters have honestly and straightforwardly shared their point of view.
Sadly it seems to have been taken over by the screening zealots who decry anyone who declines screening as selfish/ stupid/ being cowardly/sure to regret it.
It would probably be helpful to separate the discussion away from 'I don't want to go through the discomfort of a mammogram' more towards the 'I don't want to risk being one of the 3 in 4 women receiving treatment who probably didn't need to.'

@WiseUpJanetWeiss has shared the NHS information (numerous times and on deaf ears it seems?) which gives rise to concern and a pause for thought for many of us.
Earlier in the thread I shared lots of medical and other links which support this point of view, but these also seem to have been steadfastly ignored since they don't follow the screening evangelism seen on this thread.

Some questions I raised indirectly previously, which are worth considering:

• why is the original architect of the breast screening programme now calling for it to be scrapped?
• why are several other countries winding down or reducing their breast screening programmes?
• why are many GPs reluctant to recommend breast screening to their patients, or even attend themselves?
• who benefits from retaining the current screening programme (think commercial/political)

And it's also worth stopping to think about how life changes once you have been treated for breast cancer (which the NHS tells us in 75% of cases was possibly unnecessary):

• you may have physical body/breast changes
• you may retain a high level of stress/ health anxiety about cancer re-emerging in the future
• your relationships with friends/ family may change (my mum had breast cancer and the worst thing for her was being expected to conform to the 'cancer survivor' identity)
• your employment may be impacted, directly or indirectly
• You may be affected financially - health insurance and travel insurance costs may rise.

Overtreatment is not some minor inconvenience which you can get through then forget about - it is something which could fundamentally change your life forever. Overtreatment has wide-reaching and significant consequences for women's lives.

And in breast screening the overtreatment statistics are simply too high. The NHS and medical professions know this. This is why the patient information leaflets have been forced to so overtly state the risk equation.
I think there's a chance that in the future this will become one of the next medical scandals/ exposes.

@GrainOfSalt Thankyou Re the big boobs thing Me too Im a HH I was reading on another thread that its easier if you are bigger. I thought it would be harder.

If you're OK processing medical journals, this is possibly the most relevant recent study - the Nordic Cochrane review of breast screening (2015)
journals.sagepub.com/doi/full/10.1177/0141076815602452
/
"Mammography screening is harmful and should be abandoned"

if you just want the TL:DR try the conclusion only:

Conclusions
Mammography screening has been promoted to the public with three simple promises that all appear to be wrong: It saves lives and breasts by catching the cancers early. Screening does not seem to make the women live longer; it increases mastectomies; and cancers are not caught early, they are caught very late. They are also caught in too great numbers. There is so much overdiagnosis that the best thing a women can do to lower her risk of becoming a breast cancer patient is to avoid going to screening, which will lower her risk by one-third.We have written an information leaflet that exists in 16 languages on www.cochrane.dk, which we hope will make it easier for a woman to make an informed decision about whether or not to go to screening.
I believe that if screening had been a drug, it would have been withdrawn from the market long ago. Many drugs are withdrawn although they benefit many patients, when serious harms are reported in rather few patients. The situation with mammography screening is the opposite: Very few, if any, will benefit, whereas many will be harmed. I therefore believe it is appropriate that a nationally appointed body in Switzerland has now recommended that mammography screening should be stopped because it is harmful.

@Alphabet1spaghetti2 I'll break things down for you one more time.

Your characterisation of my mild statements, that I personally choose screening and treatment whilst supporting every woman's right to choose, as 'passionate' is misleading at best. You cannot locate a quotation backing up this claim since it does not exist.

I am enthusiastic about genetic advances precisely because they offer hope for personalising cancer care. We already have women with ultra low risk breast tumours who are being offered minimal treatment on an experimental basis. I posted the info to this thread because many women expressed a reluctance to attend screening based on the risk of over treatment. I consider that relevant; if you disagree, instead of trying to bully me off the thread, let the MN admins make the decision.

@WiseUpJanetWeiss takes the other side of the screening debate from me but she and I have had a respectful and interesting read of each others' views here.

I came into your conflicts with PPs when you questioned @Redannie118 's
lived experience of lumpectomy yesterday at 16.55. ('As for thinking it's a minor operation wow just wow.')

She was correct that medically lumpectomy is classified as a minor op and she had an easy time of it. She deserved respect.

Regarding the links on this thread:

You posted a link to the leaflet the NHS sends out with one's invitation to breast screening and you posted a link to BCAction.org which in turn links to a research paper. The BMJ link and others were actually posted by @FluffyHamster. The paper BCAction.org links to actually shows a significant lifesaving benefit for nonpalpable tumours which for some reason does not get much attention. I will discuss it in another post.

You posted this yesterday at 12.31:

'What has happened is that people are claiming that the nhs and bmj and the uk government and other medically renowned authors are putting out false facts.'

I have re-read TFT and found no evidence whatsoever of this. I do find the links selective and I will address this point in the second post.

You also keep saying this is a thread about nonattendance. But surely you know that one of the charms of MumsNet is that threads take on lives of their own. As @WiseUpJanetWeiss says in the post below yours, "You do not have the right to silence people whose opinions you disagree with.' If you feel the various points of view on this thread are not in keeping with the spirit of MumsNet you are free to take it up with the admins.

@FluffyHamster I have enormous respect for the way you are trying to resolve a dilemma each of us is grappling with or has grappled with.

But that Nordic Cochrane review is 8 years old and the work was done before that. Cochrane is generally of an excellent standard so I will look at it carefully. But some huge, excellent more recent meta-analyses are coming down on the side of screening. I will come by after looking at your link.

That Nordic Cochrane paper is quite interesting, @FluffyHamster but it raises some questions. I want to know more about the author's statement that a Norwegian study found that screening does not reduce the rate of advanced breast cancers. I wonder if that has been replicated? I think it is really important for figuring out what is going on.

Well this 2020 article in a very high quality journal says that screening does reduce cases of advanced BC:10.1002/cncr.32859

Here is another huge study showing significant reduction in advanced breast cancer from screening, although the authors urge some caution

rdcu.be/c7wbv

Both of these studies are much bigger than the Norwegian study

I have chosen to focus on the reduction in advanced BC from screening because that is an indicator that early tumours are being found.

I still think there are some excellent points in the Nordic Cochrane article from @FluffyHamster but it is tricky, if we lose the premise that there is no reduction in advanced breast cancer cases from screening.

"You also keep saying this is a thread about nonattendance. But surely you know that one of the charms of MumsNet is that threads take on lives of their own."

I wouldn't mind if people weren't posting 'how awful this thread is, it's full of people saying they don't want screening and giving reasons why not." That's slightly irritating. The clue is literally in the title.

You posted this yesterday at 12.31:

'What has happened is that people are claiming that the nhs and bmj and the uk government and other medically renowned authors are putting out false facts.'

I have re-read TFT and found no evidence whatsoever of this. I do find the links selective and I will address this point in the second post.

Well, I have been accused of lying when directly quoting the NHS information, so I suspect that’s what Alphabet means.

Thank you @poetryandwine for the additional reading (although my phone is currently saying no way - think I need a new one - so I will look properly later).

I will, of course, change my mind if the facts change.

A pp assumed that I would be “against other things” (by which I suspect she meant vaccination?) if I was “anti-mammogram”. I’m not anti-mammogram for a start - they are a useful diagnostic tool and as I’ve said before I think of women want screening they should be allowed to have it.

I am, in general, screening-sceptic for all the reasons above and more, but I am willing to be educated and to have my mind changed because I’m passionately pro-evidence based healthcare. (Therefore, of course, I am very much pro-vaccination.)

@Alphabet1spaghetti2 linked to a BC Action article which in turn links to https://doi.org/10.1136/bmj.g366

This gives the results of a large (over 89,000 women)
Canadian study. The rate of over diagnosis was 22%. The overall mortality and BC mortality rates amongst screened and unscreened women over 25 years were roughly equal with women whose cancers were detected by mammography doing a bit better. However women with nonpalpable tumours (tumours that could not be felt) discovered by mammography had a much higher 25 year survival rate than women with palpable cancers, at 79.6%.

As the over diagnosis rate is 22% is is not clear to me, as a non-expert, how to interpret this. (We need a medical statistician. Is it a simple matter of subtracting 22% then comparing survival rates for the 'real' cancers, or is it more complex?)

BC Action is using these figures to conclude that screening is not useful. I think it may be more subtle.

A large meta-analysis from 2020 showed a 33% reduction in BC mortality from attendance at regular screenings. Elsewhere it is discussed that there could be bias: women who attend screenings could have other healthful behaviours affecting BC mortality. Still pretty impressive, however.
10.3390/cancers12040976

@poetryandwine and I’ll say it one more time for you!’ This is a thread for why you didn’t attend, nothing more and nothing less. Please use your enthusiasm and fervour to start a thread as to why posters should attend screening.
There you go, I’ve even been nice enough to give you the title.!!

thank you for your links, but my software says they are a dangerous link. So I’ll not click further on them. But I’m sure they are interesting. You won’t be changing my mind as to why I won’t attend, as, if you had read my reasons as to why I won’t, they are based on my own personal and individual experiences and abilities. As I have said before (if you cared to read my posts) it would be a waste of resources. resources I would prefer went to someone else who did want screening and possible treatment.
If you cannot understand that, I really cannot make it any simpler.