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 .

@WiseUpJanetWeiss I do agree wit you that every woman should of course make their own choice but given those figures, the vast majority would still go for the treatment. If I knew I had a lump with a 1 in 4 chance of it killing me one day if I do nothing, I would go for treatment.

Yes absolutely - the choice all depends on your attitude to risk and other personal/individual life factors.

But the facts are the facts, and the coercion and misinterpretation of the facts must stop.

As I admitted upthread, I cannot endure a mammogram, too painful, but I eat v healthily, don't smoke, have max 2 glasses of red wine per week, my BMI is about 27 though so working on reducing that a bit. I check every morning in the shower. I feel I'm doing what I can. I cannot have a mammogram. But, If I did find a lump I'd have biopsy, that I could endure. If it was cancer, I'd have the treatment, I'd have both breasts removed. I just cannot have a mammogram. So I don't feel I'm ignoring facts. I just feel there's a limit to the amount of pain I can endure while conscious.

treatments that women might be OFFERED at might CHOOSE to have IF they want to.
You are talking as if they are held down and forced into it

It’s true that medical prognosis is complex and it is not exact. It’s true that screening programmes are not perfect. It’s true that a risk of over treatment in the breast cancer screening programme has been identified and I hope that they will soon come up with some sort of improvement which could address this. Perhaps the doctors and researchers need to come up with a different treatment plan ( watching and waiting ?) for the cancers which are most uncertain as to whether they will progress. But women in that situation ( especially if they are younger or middle-aged) might still prefer to have surgery etc as they don’t want to take the risk of leaving it.
It’s also true that in general across most/all cancers the medical profession advise that cancer should be dealt with earlier rather than later if at all possible.
Most people feel that it’s extremely sad when people are diagnosed late with cancer and nothing much can be done. This happens frequently with certain cancers. At least this happens less frequently with breast cancer, due in part to the screening programme.
Some posts on here are scaremongering and putting women off breast screening, often on spurious grounds which I don’t agree with. Earlier in the thread there were all the posts about how infantilising the invitation process is and how rude the mammographers are and how painful the procedure is. These negative experiences are being blown up out of all proportion. Some posters have tried to redress the balance by saying they didn’t find the mammographer rude, or it was a bit painful but not that bad. All that happens then is the same people put more posts on insisting on the negative and if all else fails some posters claim they can avoid these issues by having private healthcare or by declaring they are happier to die without treatment.
Its disappointing that a discussion about breast cancer, which is of great relevance to most women, ends up with these types of attitudes and the outcome is one causing extra anxiety and fear.

very good post

ArcticSkewer
“Is it okay if they have one of their breasts cut off? Chilling attitude!“

I had one of my breasts cut off. It wasn’t chilling. The thought of dying was.

Get so fed up with all of the hyperbole around mastectomy. Emotive words like “mutilitated” and “devastating” regularly thrown around during discussions.

I don’t feel devastated or mutilated. Just incredibly grateful to still be here. I am so much more than a few pounds of flesh. I wish they’d take the other one too.

I suppose someone who hasn’t had cancer probably won’t understand that.

I’m going to stop posting on this now

I’m with you on most of this, @JussathoB . @WiseUpJanetWeiss has been particularly thoughtful but not everyone has. Some of the scaremongering around over treatment has been inaccurate and I hope women will not base their decisions about mammograms on that.

Maybe I’ve been lucky but my mammograms have not been painful and if I were diagnosed with BC I am pretty sure I would rather be over treated than risk under treatment, if that is the choice. But the choice is for each of us to make

Thank you, @MrsSkylerWhite I also found the post you quoted quite offensive.

I'd disagree that surgeons leap straight to mastectomy with breast cancer. I didn't have a choice but I know a number of people who've had lumpectomies and also some where they would like a second breast removed, often for symmetry and this has been refused.

There is currently a clinical trial offered to some patients with early stage breast cancer which is designed to reduce over treatment and use less invasive methods.

I was recently offered this as an alternative to lumpectomy. The tumour is removed by vacuum using a biopsy needle. The crucial thing to note is that this treatment is only offered to very early stage cancers detected by screening. So if you decide against mammogram you may also reduce your treatment options resulting in more invasive treatment. If anyone is interested it’s called the “Small” trial.

If you look at the title you will see this is literally a thread about why women have decided not to have routine mammograms.

Therefore it has the opinions of women who have decided not to have routine mammograms with a list of their different reasons.

Please feel free to start a thread about why people choose to have routine mammograms and then legitimately complain about any posts that point out the disadvantages as listed on the leaflet the NHS sends out to everyone (which did not used to include the information about the risks of overscreening) as being irrelevant to the thread.

But to complain that a thread asking why women decline routine screening as being full of women giving reasons why they decline screening is odd.

Unfortunately if you do find a lump, the first thing you'll be sent for is a mammogram. I had quite a heated disagreement when I wanted to go straight to ultrasound as the tech said they needed the mammo to find the suspect area.

I rather disagreed with that - my lump was huge. I also knew it was a fluid filled cyst that would not compress and that even something touching it gently was agony. I had over 100ml drained from it that morning.

This thread is about the screening programme - which starts at 50 years of age. It doesn’t include those younger than that at present unless you are asked to join a new study, then it’s 48 years of age. It’s not even about mammograms, although it very difficult to separate that out by the very nature of the program. It is about the screening program and how a national screening program is not attended. No misinformation has been provided. No one has tried to persuade or insist that anyone should not attend.

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. They aren’t they are putting out the facts of long and huge studies, encouraging individuals to make a balanced choice. If the information provided by the nhs is so wrong - why are those posters then going ahead with screening and treatment? What suddenly makes the nhs information so much more believable? Why is negative nhs information misinformation, but anything else must be blindly followed regardless of individual circumstances? Posters are openly harassing people into believing that individual circumstances and choices are wrong, if they do not attend screening.

No one has said that anyone who attended/s screening is wrong, No one has said that anyone who gets treatment is wrong. Posters have been given positive feedback and hopes that their journeys continue to be positive. No one has said they they don’t understand why someone might go to screening and attend further treatment if they require and wish to do so. This is all positive.

Posters have said that those who have opted out, cannot possibly have experienced what we have experienced, that we are to blame for what we have experienced, that nothing we say about our own lives experiences, choices, personal wants/ needs/desires can be true or understood. It’s lovely and supportive to be wished a long drawn out and painful
death all because you don’t wish to attend screening or to have treatment. This is very negative.

Death by the way comes in many guises, do we stop doing anything and everything to avoid it? Do we daily get checked for everything that may or may not kill us? Do we stop doing anything that may kill us? No, because death is a fact and happens to everyone once and for many different reasons. So we all daily and individually risk assess our actions and lives based on scientific facts, studies, individual circumstances, common sense and much more.

It’s a shame that women cannot support each other and accept that people are individual and leave different lives and have different experiences. This thread won’t persuade anyone to conform and attend screening, it will persuade women and possibly men, that its best not to talk, not to ask for support, not to discuss things, because you won’t get any support if you don’t conform to other peoples ideas of normality. It’s very isolationist and negative. All because posters will not accept that there is another viewpoint to screening and both sides validated by medical experts.

As I said before. It is a thread about not attending. Perhaps those who have had wonderful experiences would like to make their own thread about why they attended and why women should attend, rather than trying to deny others their experiences and life circumstances. I’ve yet to see a such a thread being started in the past few days.

You do not have the right to silence people whose opinion you disagree with. I have not scaremongered and I have certainly not lied. I have quoted facts without spin. I have given my rationale for my choice. I have not and will not advise other women not to attend mammograms.

Do other women the courtesy of assuming they are capable of assimilating information and coming to their own informed choice.

Some of the cooments on here on unreal. "Ive never had a mammogram and I wont ever have one even if i think I have cancer" So you are passing judgement on a test youve never had based on a diagnosis youve never had?

You are all throwing this " I wouldnt have this test/treatment " ect around like it is some kind of badge of honour that makes you special, when you have no idea what a cancer diagnosis feels like or how it effects you.

The first thing I was told when I got my breast cancer diagnosis was "You can choose to have no treatment at all" No one is holding you down and forcing treatment on you. As for the radiation risk, its tiny. People on here making out that it like being strapped to a nuclear missile is fear mongering nonsense. If you needed a xray for a broken leg, would you turn that down too?

I know im taking this personally but its very hard not to. As well as stage 3 breast cancer I have a life limiting auto immune disease that requires constant, invasive screening. I could turn it down of course, but heres a funny thing, I dont want to die !!!! Its really easy to bandy around the whole "Im not a sheep and im not conforming!!" Battlecry when you are healthy. Try it again when theres a VERY real chance you could die without these tests and then see how you feel.

@Redannie118. No one is throwing anything around as if it’s a badge of honour. (Although there are posters who are proud of their battlescars).

i can’t speak for other and neither can you. But I can say I’ve had personal experience of cancer diagnosis and treatment, survival and deaths in both my professional and personal circle. It is only
a small part in my decision of how to a proceed regarding screening. But please, go ahead and join other posters in saying my experiences are not valid. I have
chosen not to get tested for my very valid reasons, so I won’t know if I have or will ever get BC, maybe I will, maybe I will die of it (sure some on here will be very pleased). But I won’t know as I’ve never been tested - so yes I will
doe in blissful ignorance! The other option is to live in constant fear with health worries - because even if I did go, and was told I had cancer, I still wouldn’t do the follow up treatment for reasons I’ve already given to those who’ve asked. That’s not a life I would want for myself.
no one has compared anything to a nuclear missile - that’s you blowing this up out of all proportion- no one else, so maybe take note of your own advice?

I do hope your journey is a good one with a positive outcome. But maybe a thread which has the title this one has, is not for you. Perhaps start one looking for positive breast cancer outcomes would be much more suitable and supportive for you at this juncture in your life?

I'm quoting this again. Good post @JussathoB .

I don't accept all the denials about wanting to scaremonger and influence women against breast cancer screening. I wonder what else the anti ammogram brigade have in common?

I certainly don't wear my battlescars as a badge of honour @Alphabet1spaghetti2 , what a nasty comment.

I know a lot of women who have had breast cancer. One died last week aged 40. She didn't have the priviledge of screening as too young. Majority had lumpectomies. If you saw me naked you would struggle to see that I had any surgery. No reconstruction, no mutilation, although I would have preferred a mastectomy actually.

@IceFair and it’s not a nasty comment to say that those of us who wish to not be in the screening program wear our beliefs as a badge of honour?! How very contradictory, negative and frankly bizarre. It’s ok for people to denigrate those of us who wish to not be in the program, but it’s not ok for us to defend ourselves, to answer and reply to posts in a fair manner pointing out their own flaws in comprehensions and defend ourselves against quite nasty attacks. It’s not ok for those who have reasons based on science to defend themselves (and no we are not talking about science from the school of witchcraft and fakery).

Again - not supportive and please go and start a thread with all your positive reasons for a screening program - (yes - a screening program, not exclusively mammograms) should be in place. Because this is not that thread.

If men had to put their testicles in a vice an alternative would have been found by now.

I went for my first mammogram last month and was somewhat nervous as some people talk of them being painful/ invasive. Bollocks was it. It was no more painful than it would be if a three year old squeezed your hand. I asked the radiographer if that was all there was to it after she had done the first side and couldn't believe it when she said yes! In and out in 5 minutes and recieved the letter less than a week later

I don't accept all the denials about wanting to scaremonger and influence women against breast cancer screening. I wonder what else the anti ammogram brigade have in common?

Spit it out then. What have you assumed about me?

@Alphabet1spaghetti2 having someone you know get a cancer diagnosis and recieving one yourself is NOT the same and is my entire point. My treatment abd that of many many women was to have a lumpectomy. I was in and out of hospital the same day.
You are doing a lot of " people think my experience isnt valid" whilst completely ignoring the vast amount of people who have actually experienced it. Im sorry, but i refuse to believe you would rather die than have a minor operation.

Redannie, you talk an awful lot of sense. While I was undergoing treatment, an awful lot of people tried to see themselves in my shoes, but they couldn't.
A close friend has recently been diagnosed, she has been speaking to me about her feelings because she knows that, to some extent, I understand. Everyone's cancer is different but at least I've been there.