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.

If this is part of a trial, it means the benefits are not yet fully established.

So it's not unreasonable to refuse to take part, in view of the known risks of screening, versus the not-yet-established benefits of screening before age 50. It's an entirely personal choice.

I wasn't sure about taking up the offer of screening at 50, but as it happens I discovered a lump in my breast before I was called for a routine mammograms so I was sent for one by my GP. We were both confident that it was a cyst, and it was, but finding a breast lump in an over 50 definitely alters the risk-benefit ratio of screening.

I had the same dilemma when I was called up at 48.

Everyone said to go, so I did. I did not have a good experience because.

a. the technician that did it was not good and it hurt a lot.
b. My breast tissue was too dense and it hurt a lot.

I was called up again 3 years later (actually 2 yrs and 10 mnths) so went along again. I took loads of painkillers before. This time the technician did a perfect job but I was recalled. I went to the breast clinic, had loads of mammograms on the area in question, ultrasound and they were very, very thorough. I take my hat off to them. They were really nice, helpful and understanding. If everyone I met in the health service was like that, it would be really outstanding everywhere. They signed me off (after a meeting with all the other people who work on these to make sure nothing had been missed).

I am 1000% sure that if there had been anything to find, they would have found it. As it was, there was nothing, and the thickening they saw on the original screening mammogram was probably due to a menopausal blip in hormones.

So, I am still in two minds as to whether it was worthwhile. One the one hand, I know there is nothing wrong; on the other, I never thought there was in the first place. I will go along because I am taking HRT now, and it ticks the boxes to make the doctor happy. I am not certain that if they found something, that I would not get swept along in their flow and end up having things done that I would not be happy with in hindsight. They are just too good at it .

Scans are getting more accurate as time goes on, so hopefully the understanding of what needs treating will develop and improve.

YABVU! Go! I have lost 2 family members to breast cancer. And have just watched my MIL go through treatment - she is ok but only because of a routine mammogram.

OP you knew this would be an inflammatory topic when you posted it. You knew people with very personal experiences of all different types of cancers would come back to you on this thread. why even bother posting on here? I find your thread weird. If you don't want to go then don't go...but remember that prevention is better than cure. YABU.

Actually I think its VERY important to talk about the RISKS of screening rather than blindly accepting that screening is always a good thing.

Its about being able to make an INFORMED decision based on science and evidence rather than making a decision out of fear or being bullied by emotive appeals 'that my relative died' and how selfish you are for not being grateful for screening.

It may well be the case that the OP does go for screening, but it is essential to have a proper debate rather than attacking those who question just how effective something is. We should not be coercised into making medical decisions about our body which might have long term effects and consequences - and that is equally applicable to those who have cancer and those who get a false positive and have unnecessary treatment.

There is a huge debate about the ethics and the way in which the NHS and other health providers present risk and how they get us to respond in a certain way. It is worth noting that when presented with two alternative treatments doctors will often take a more life threatening course rather than the 'safer one' they would recommend to patients which has a great chance of side effects which might be disabling in someway. Why? It is because we often have different priorities for our own health. Perservation of life verus quality of life is an important consideration that should not be dismissed.

There is not necessarily a 'right' answer. More a right way for each individual and we should be free to make that decision without being forced. Being forced or coercised in any way at all undermines the principle of individual consent.

So yeah lets have an 'inflammatory' discussion if that means we have a discussion which ignores the emotive appeals above being able to make a properly informed decision based on scientific evidence.

There is a ton of stuff that questions the idea that 'preventation is better than cure'. I highly recommend reading Bad Pharma by Ben Goldacre or The Patient Paradox by Margaret McCartney for a critical look at why screening isn't always in the best interest of all patients.

"It is this risk of them finding and treating a cancer that would never become a problem I struggle with."
If they find a cancer, you will be offered treatment. You don't have to have the treatment. My mother declined treatment for a cancer that wouldn't progress fast enough to overtake her heart disease. He doctors were fine with this.

YANB, well done for properly reading the information and thinking about it!
Screening for many conditions is contraversial.
Some feel that a lot of screening programmes are brought in as political measures because the public in general like them.
It's a personal decision - for most people the prospect of finding the big scary diagnosis earlier and being treated outweighs the potential harm of worry and unnecessary treatment. But it's completely ok to feel the other way.
Personally, I will go when invited. But I wouldn't judge anyone who felt differently.

That check found that she had cancer (not quite sure where as I didn't like to ask, but I know it was in her reproductive system somewhere). Tragically she died of it about 6 years later, but that early discovery gave her a few extra years with her family of pretty good health

Well it may have done. Or it may have put her through the ordeal of living with the knowledge of her cancer for several more years than if she had been diagnosed later and led to her having painful and ultimately futile treatment.

Pesonally I would much rather not know until the last minute if I have a cancer with a low/minimal chance of treatment that controls it. Other people will want to be diagnosed ASAP whatever the circumstances. That's why everyone should make their own decision on screening and investigations for early cancers, rather than being railroaded into having tests by emotive stories.

IF they find something, then is the time to make a choice about whether to run the 25-75 risk. Only you can make that choice. But the screening doesn't commit you to the full gamut of treatment.

It's your body. For this reason alone, YANBU.

I went for a routine mammogram in January. I am almost 52 and it was my first one here in uk but I had had 3 previous mammograms while living overseas where the recommendations were to have mammograms every three years after age 40..

My previous mammograms were all clear.

This one wasn't.

I was diagnosed with DCIS. High grade apparently. So whilst it is not currently invasive it could become invasive in the next year or two apparently.

To be honest I wasn't really given any choices in the treatment although I am sure I could have refused it. But I just heard pre-CANCER and wanted it gone.

At this stage I have had the area removed and the pathology results confirmed it is still non-invasive. However they didn't remove as much of the surrounding area as they would like so I'm having further surgery. I will then have radiation therapy.

And hopefully that will be that.

If I hadn't had the mammogram I obv would not have known until much later and if it did become invasive would potentially be looking at much more serious intervention.

If I were you I would have the mammogram. If they find nothing - great. If they do you can decide what you want to do. It's your choice. The opportunity of having a mammogram gives you choice. Many people don't have that choice. Either because they are perceived as being not in the right age group or they develop a cancer that is not a cancer that has a screening programme for whatever reason. I'm thinking ovarian cancer there. Very had to screen for but there may well be Pre-cancerous changes that could be dealt with.

Actually - in 1989 I had laser treatment for pre-cancerous changes to cells in my cervix. Found during a routine smear test. I was 25. I'm not sure I would be entitled to smear tests nowadays at 25. Prepared to be corrected on that.

Can I ask a Q for anyone who knows....? Hope this isn't a derail!

Why is it that we don't have a national screening programme for prostate/ testicular cancer because of the proven risks of screening, but we do have smear tests and mammograms -- in spite of the proven risks of screening?

Is it that the prostate cancer screening is so much riskier or is there some gender bias going on here?

Recently there was a 'town hall' style debate where I live over prostate cancer and a urologist I know participated. He argued against routine screening for prostate cancer on the grounds of how much harm the screening could cause. I couldn't see much difference between his arguments and the arguments against screening for female cancers. But the NHS funds the one, and not the other.

Does anyone know?

It is an excellent question revolting. There probably is some gender bias and some clinical factors - the prostate 'cancer' blood test (PSA) can be raised by lots of other conditions, for example, including UTIs. But a lot of it boils down to the fact that breast and cervical screening started before we understood that many 'pre-cancers' do not in fact ever become cancers.

Let's face it - effective screening is the dream - we would all love to see a world where we could identify and prevent cancer before it ever became invasive. The problem is that we are not in that world. We don't know which pre-cancers are really cancers in waiting and which will go away again or never progress.

It has taken doctors a couple of decades to realise that what we call the natural history of a cancer (i.e. how it behaves over time) is far more variable than we used to believe. For example, we used to think that early changes in cervix cells (CIN 1) would inevitably progress to CIN 2, 3 and onto actual cancer if left for long enough. We now understand that this is not the case, which is why we now often recommend a wait & see approach (though this depends on the individual patient).

When DH reached 50, the surgery invited him for a Well Man check-up. The doctor mentioned that he is NOT a fan of the prostate cancer tests, because it was prone to picking up cancers that would never have an adverse impact on your life, leaving many men having invasive treatment with unpleasant side effects, when its unnecessary.

With breast cancer screening, I have similar views to the OP. I have breast implants, so I don't think there would be any point in going for screening, but that aside, the worry of over-detection would be enough to make me think twice. I have no family history of breast cancer.

From what I can remember, there was debate about whether breast screening was suitable for the population before it was introduced, and there was a very strong lobby for it. At some point, the statistics and the wishes of the lobby came together and it came into being.

Things have changed, technology has improved and knowledge has improved and it is well funded. They have been pulled up from supplying misleading information in the initial leaflet, have clear evidence-based protocols, and so at the moment, it seems a good thing.

I would think that it is very difficult to decline or postpone treatment once you have had a diagnosis of cancer/pre-cancer through screening. They are very incentivised to carry on through and you need to know a lot to be able to decline. Also, if your results are not conclusive, you may have to go for further tests that are much more invasive and damaging, and it is a hard thing to persuade them to go for watch and wait, as a patient.

It's your body and it's entirely up to you whether you want to be screened or not.

I work in a breast cancer unit and some of those who work there don't go to screening and don't agree with it.

Screening does pick up the microcalicifications or the pre cancers that aren't detected any other way. But as you said a lot of these are completely harmless and those ladies diagnosed with it can face major surgery, for something which would never have been life threatening to them.

Screening won't stop you from getting cancer, all it can do is diagnose you with it a few years earlier.

I'm in the US so have been offered free mammograms since age 40. I have them every 2-3 years. I have had one false positive which was then ruled out with a CT scan. I decided I didn't need annual mammograms but I do like to have one every few years.

Revolting, I believe that the main reason is simply that the false positive rate for prostate cancer screening is much higher and deemed unhelpful. A great deal of these 'cancers' do nothing and have no negative effect on death rates as men die of something else first. It is encouraged in the USA I believe as people make many from it, but the NHS has not supported it saying that it does not make any significant difference to death rates but obviously means that men are more likely to suffer harm from unnecessary invasive behaviours.

I also don't doubt that there is a certain amount of gender bias at play too. Culturally there is traditionally a lot more critical thinking by men and that women are easier to get to do screening programmes because they tend not to be encouraged to be individuals and have more of this social 'pack' pressure to fit in / comply that is not as strong for men (its still there, but its not as significant as an influence on behaviour - the beauty industry is a good example of it). Women are much more accepting the idea that a medical procedure is a good thing and will help us so are more likely to see the doctor, whereas men are more suspicious and more likely to avoid doctors (yes generalisations, but this is backed up in studies on behaviour).

The tone of advertising for screening programmes is also very interesting - there have been lots that appeal directly to this emotive or idea of selfishness (and are highly ethically questionable as a result). These are things that men tend not to respond to as well as women. This may influence whether screening programmes are encouraged for men as they are expensive to set up, and if take up is low then it would be deemed a failure.

Plenty of women feel the same way as the OP about screening. On an average day I'd say almost a third don't attend their appointment.

Here's a long but very informative blog post addressing some of these issues:

scienceblogs.com/insolence/2014/02/17/the-canadian-breast-screening-study-attacked-why-do-doctors-have-such-a-hard-time-with-the-concept-of-overdiagnosis/

I have noticed over the years how the wording of the leaflets has changed. It used to be 'screening saves lives' with the clear implication that you would be mad not to go for it, to 'we are offering this, it might catch a cancer but then again it might diagnose something which could be left alone but causes you to worry, so the choice is yours'.

Doodle, you can have private mammograms if you so wish. Many clinics do them.

My aunt had breast cancer 12 years ago and was fine after treatment, a few months ago after routine screening cancer was found in the other breast, she had a biopsy and was told it was most likely non invasive. Turns out there were aggressive cancer cells there too and she needed more surgery. She has now had surgery and is waiting to start radiotherapy.

Go and have the screening!

I'd always go because I would be too scared not to (am a worrier). I went last year -48. Have to say I found the mammogram painful (think I had a horrible woman doing it). I was called back because they found calcification, which can be normal but cd be a sign of cancer. The risk was very low but the stress was very high! I had a biopsy -excruciating because of the position I had to adopt - and was told at the end that if it was cancerous they would do a full mastectomy because of the extent and position of the calcification. I actually thought the nurse was preparing me for the worst because they had spotted something during the biopsy but she was just being over-zealous and freaking me out unnecessarily. I have to go back after one year, but am pretty sure all is fine (turns out my mum is prone to calcification, too).

So I wish I hadn't been asked. I would still attend screenings if asked because I am a just-in-case kind of person. But it was a lot of unnecessary fuss in my case.