"Needless" breast cancer ops

Public Archive
21

Yes Daphne thanks for the link to this latest Baum article. I have a huge amount of respect for his ideas and rememeber being impresed by seeing him speak somewhere…was it a Breakthrough through event a while back???

Leadie…strangely no I don’t feel bitter…angry yes about getting breast cancer at all…but I really think the terrible error may not have affected my prognosis. Sure I’m angry I got breast acncer but its that I loathe more than the misdiagnosis.

I tell myself strange maybe pluses about the misdiagnosis: like because of timing by the time I was diagnsoed in October 2003 I was able to have taxotere after surgery (having had AC before surgery…7 months earlier I couldn’t have got it at that time)…and I did get two and a half years in NED which might have been the taxotere…or might not…never know. I had an independent oncologist’s report who reckoned the misdiagnonis might have reduced my 10 year survival down from average 42% to 18%. I won’t live (bar a miracle) to 10 years now…but maybe I wouldn’t have anyway. I pursued the case doggedly…I didn’t have a compensation case because under Englsih law to get damages you have to prove that but for the negligence you would have had more than 50% chance of 10 year survival and I didn’t. So I’m proud of myself that I pushed for a Healthcare Commission investigation and a GMC case…though my little case was only part of a much bigger scandal. I was a witness in September 2007, 4 and a half years after misdiagnosis and I sat in this big room for an hour and half telling my story, with the shamed doctor listening…and I think he was sorry though I felt cold and distant towards him…or at least pretending he was sorry and apologising through his barrister to me probably saved his job, and I’d rather he had lost it. And it wasn’t just him…it was the whole system at the hospital and I am more angry with the senior managers who intially tried to cover up my case and belittled me during a local investigation. I did it so no one else at that hospital might have to go through what I did…it was cathartic for me.

Its great to see serious dicussion about screening on the boards and I am being a bit diversionary in telling my little story to a new generation of posters…its still cathargic particlulary at sad times when friends are dying. Daphne and I are are very old lags on these boards and its great seeing new names joining in on the debate…though I bet we all wish we were discussing something else.

Jane

22

Thanks, Daphne, for the link. A really well-written, intelligent piece I thought. And I did have a dip into other articles and have bookmarked the site for future reference. Brilliant site.
And Jane, I don’t think it’s at all diversionary to tell your story as personal experience is an especially valuable part of these sort of serious discussions. Our personal experience is why we’re all here after all!
I found my lump myself, so haven’t experienced the screening system, but still see it as an important part of the tapestry that makes up the whole system of breast cancer treatment. I’m really enjoying (if that’s the word given all our circumstances!) reading all the input here.
Phili x

23

Hey Jane, Daphne and all I haven’t ‘met’ before, I’m glad to find you relatively well and still active on these boards.

I just came on to post the spiked article but I see you’re all way ahead of me. I was interested that Prof Baum thinks even IDC could be left alone because cancer cells do not follow mathematical models of progression. I too have a great deal of respect for his position on screening and I’m a big fan of spiked online so I’m thrilled you all like it. My presentation was symptomatic (bloody discharge from the nipple) but I have to wonder if even the few escaping metastatic Her2+++ cells from my IDC found in a sentinal node biopsy which earned me chemo after mastectomy and then a year’s Herceptin really warranted this barrage but feel much less qualified to make such decisions than my surgeon and oncologist so must be content.

The spiked link for anyone interested in following it up is spiked-online.com/index.php?/site/article/6563/

Very best wishes to new posters and old friends.

24

What a powerful article. Thanks for the link to it. I’ve been very pro screening because of my personal circumstances ie. I got caught by the screening programme at the age of 53 which detected DCIS and Grade 2 invasive cancer. I went through the usual rigmarole ie mastectomy and chemo. I’m in the process of being diagnosed in my other breast now but don’t yet know if this is anything or not.

Reading this article though I completely take on board his comments and to consider the ‘poodles’ and the ‘rottweilers’ is of huge importance. We’re talking aren’t we about targeted diagnosis as well as hopefully more targeted treatments in the future. This has to be the way to go.

Screening appears to be such a certainty but it’s not. I suspect though it’s people like us who have gone through or are currently going through the diagnosis or treatment who are taking on board his comments rather than the wider public, many of whom get their info through the media headlines. Even within the breast cancer community there will be a huge division. However, I believe as mentioned in the article that the breast cancer lobby needs to wake up … but who is the breast cancer lobby? Is this the charities? If so, how are user voices being recognised and used? What if any impact do we have regards our opinions? I presume if we question screening we’re in the minority and villified by one and all.

Gill

25

Just a quickie in response to your important points Gill.

My feeling after 5 years plus noticing what the charities do (and don’t do) is that the major bc charities in the UK (BCC and Breakthrough) over egg the importance of screening…its a safe cosy issue…much harder to take on radical issues like the slowness of progress in getting adequate treatments and cure.

Jane

26

Interesting! - and thought provoking article, thanks for flagging it up.
Jane, you are right, it does have a “big picture” implication, and I know you are very informed on the politics (maybe not in the strictest sense of the word, but you know what I mean)surrounding BC.

How does it make me feel, for my own situation? …Yes, as stated before, with low grade DCIS, the sort that may well only have been found if I had a post mortem, after dying from a totally non BC related cause. Might never have caused any problems…

But, big BUT, once you know it is there, would I have happily “just” monitored it? No, personally, (and, as we’ve all said - this IS an intensely personal experience) I am glad to have had the op, and will have the radiotherapy.

So, should I have been screened? Without it, I might never have known - might never have had problems…

Too many ifs, buts and maybes for me, I’m afraid.

One thing I did spot in the article - daughters of DCIS patients having difficulty with insurance cover, seems ironic when critical illness insurance DOESN’T pay out on a Dx of DCIS! Insurance companies having cake, eating it, and making trifle out of it?!

Glad you started this thread, Phili, Thanks
Lizzie

27

I agree, it’s a very interesting article, but for me it raises more questions than it answers. I have invasive lobular cancer that was detected at my first routine mammogram last November. I couldn’t feel the lump (no one could), which appeared to be 5mm on the mammo and ultrasound, but which in the event turned out to be 15mm. That is the problem with lobular cancer - it does not form a lump and I am convinced I would have gone on for several more years without knowing it was there, were it not for the screening. As it is, I have no spread to the lymph nodes and am able to avoid chemo and go straight to tamoxifen and rads. I have no doubt that the screening meant at least that I have required less aggressive treatment and at best it may well have saved my life.

Prof Baum goes on about assessing risk before giving mammograms. Well, according to the evidence I have read, I had only one of the 11 risk factors, ie, that I had not gone through the menopause before I was 50. So, would I have been offered screening? I don’t know, but on that evidence, quite possibly not.

Secondly, he goes on about giving lifestyle advice to those who have a slightly elevated risk. Here we go again. My lifestyle is very healthy thank you very much. I have never smoked, been overweight, drunk too much, been inactive etc etc. and I still developed bc. Just because you have a healthy lifestyle, it doesn’t mean you are not going to get bc! I read a news article on the internet recently that indicated that doctors thought only 5% of cancer was genetic, therefore 95% was brought on by lifestyle. I would answer this by saying that just because they have not found a genetic reason for my bc, it doesn’t mean there isn’t one. My mother died of cancer at 46, my grandmother died of cancer, as did my great grandmother. I have an aunt who died of breast cancer. That doesn’t put me in the “genetic spotlight”, but I think it shows a family propensity towards cancer, which I believe is why I have bc. So, yes, we should be encouraging people to have a healthy lifestyle, but it is not the universal panacea that doctors have a tendency to try and make us believe it is.

28

Well said Salopets. Sounds like you were caught at your first routine mammogram which puts you at around age 50. I didn’t have a lump either but I did have swelling, thickening and armpit lumps and was refused a mammogram on three occasions over a four year period being told I had nothing to worry about, I didn’t tick any of the boxes except that I haven’t had children, and as I was under age 50 I wasn’t entitled to a mammogram. My lobular breast cancer wasn’t picked up until I put myself into the system at 50. By that time I had had it for many years (confirmed by my oncologist)and it had advanced into 15 out of 19 of my lymph nodes. It was only by mammography that my lump was picked up as I still didn’t feel a lump. I would like to see the NHS screening age reduced lower than 47 - which is the age women will be able to gain access to the system in the next few years. Also, GPs need to be better trained in recognising the different symptoms of breast cancer - not just lumps. Lobular breast cancer often presents itself as a thickening of the breast tissue and inflammatory has its own characteristics.

Wishing you all well.

Jeannie

29

Jeannie, your experience is shocking. What doctors don’t seem to recognise is that you know your own body and you get a sixth sense about these things sometimes. I know they must see a lot of people who panic over nothing, but a quick check on your notes will tell them if you’re the panicky sort. You must be really cross to think that you could have been treated a lot sooner if only you’d been taken seriously.

I was 52 when called for my first mammo last Nov and I count myself very lucky. If I had been called at 50 they probably wouldn’t have detected anything and the cancer would have been present for another year when it was found by the second one at 53. By then it could have spread to lymph nodes and I would have been looking at chemo.

I think one of the problems with breast cancer is that it takes so many forms and it seems to be the more unusual ones that are harder to detect or don’t form the lump that we, as women, are all taught to look for.

I hope all is going well for you now Jeannie.

Sal

30

The document NHSBSP61, screening for Breast Cancer Past and Future is available on the NHS Breast Screening Website. It says that for every 14 000 women in the age range 50–70 years screened
by the NHSBSP three times over a 10 year period, the associated exposure to x-rays will induce about one fatal breast cancer.

Therefore it follows that reducing the age of breast screening will increase the risk of x-ray induced breast cancer.

It also says “The International Agency for Research on Cancer has concluded that there is only limited evidence that screening women aged 40–49 years by mammography reduces their mortality from
breast cancer. Further research on the effectiveness of screening at this age is under way within the NHSBSP”

and

“The IARC (International Agency for Research on Cancer) working group drew attention to the biological plausibility that mammography may be less effective before age 50 because the mammographic density of breast tissue in premenopausal women (usually aged under 50) is greater than in postmenopausal women (usually aged over 50)”

It is well known that Mammograms are not particularly effective in picking up abnormalities in dense breast tissue.

To see a debate between experts (including Dr Peter Gøtzche and Professor Stephen Duffy) and patient advocates, go to the BMJ Rapid Response:

bmj.com/cgi/eletters/338/jan27_2/b86#212985

Also see Professor Stephen Duffy’s comments on the Breast Screening Debate:

info.cancerresearchuk.org/news/archive/newsarchive/2009/april/19106437

"Professor Duffy makes two key points in his commentary, the first of which relates to the paper’s focus on the large number of women who must be screened in order to save a life.

He points out that this is the case with vaccination, cervical screening and many other disease prevention strategies, and that “if one is in the business of preventative medicine, one has to accept this as a fact of life.”

Since when did Breast Screening become “preventative medicine” rather than early detection? Vaccination against measles can be justified on the basis that most children will get measles if not vaccinated. I think it is disingenuous to compare Breast Screening with vaccination.

Let’s not forget that most women who have breast screening and also those who present with symptoms DON’T have invasive breast cancer or DCIS. I think it’s up to each individual woman to decide whether she wants to accept breast screening as a fact of her life.

31

Jane

That is what I suspected which raises yet again the issue about user voice. Unless users who are questioning are represented, all we’ll ever see is a ‘safe’ approach. So how do alternative views get heard? Nowhere of course because unless we have the time to join together and speak out, nothing happens. Grrrr!!!

LizzyM - I totally understand where you are coming from. But if we get to a point where we can distinguish between the ‘poodles’ and ‘rottweilers’ and have targeted treatment, surely approaches to screening and treatment will be entirely different. Will we not find therefore that we won’t be left in the position of thinking I have this thing that needs dealing with because we will know what the potential of this ‘thing’ is and can therefore make more informed choices?

Informed choices! Hmmm … I would love to feel far more in control about what happens to my body and it’s from this perspective I would love the BC charities to represent us. Clearly none of us want to see anyone at risk, but why are we scared of targeted approaches?

Daphne, thanks for all that info. I will read gradually over the next few day.

Gill

32

Further comment on Prof. Duffy’s implication that breast screening is “preventative medicine”. That’s not what the breast screening invitation leaflet that the NHS is supposed to be ripping up says:

"Does breast screening prevent breast cancer?

No, breast screening only helps find breast cancer if it is already there. You should be aware of any changes in your breasts because breast cancer can develop at any time. Some women will develop breast cancer before their first mammogram or between mammograms."

Prof. Duffy’s prevention strategy seems to be that you have to screen many women to prevent the deaths of relatively few. That’s not disease prevention, that’s death prevention and it’s the number of deaths prevented relative to unnecessary treatment and unnecessary worry that the experts disagree on.

I’ve heard the screen many to save a few described as “human shield”. People who believe their lives have been saved by screening will naturally be grateful for it. Whether the “human shields” that make up the screening numbers are comfortable in that role (which may lead to their lives being saved or may subject them to unnecessary treatment or false alarms) we don’t know because nobody’s bothered to ask them.

It’s not really a question those of us who’ve been diagnosed with DCIS or invasive cancer can answer. Our experience informs our opinions of screening. It’s a question for the women who believe they are healthy who are invited to screening.

33

Dear All, what an interesting debate and we should be having more of these on the threads!
What is disturbing to me is the general opinions that I hear about screening, like… it’s good that it picks it up so early…aren’t we lucky that there is screening…the public have been fed certain information about screening and believe it.
It 's the old story of the medical profession believing THEY know best and with-holding a lot of information. I found this right through my treatment, being TOLD what was going to happen and being treated like a little girl who is unable to make informed decisions!!!
Leadie

34

I think many doctors are pretty honest that breast screening harms some people as well as saves some lives, but perhaps they need to be more forthcoming about saying so when decisions have to be made and not wait to be asked by well informed patients.

They don’t know which early cancers and DCIS will progress if left alone and which won’t, so clinical protocols say that they have to recommend treatment. Though it jars somewhat with the Hippocratic Oath “first do no harm” as sometimes they will not know whether treat or leave is the least harmful option. It’s not just physical harm either. A patient could be psychologically harmed by no treatment or they could be harmed by treatment - body image, relationships etc.

I think the way forward is for doctors and patients to openly acknowledge the imperfections in breast screening and press for research to better identify abnormalities that will threaten life if not treated. Also there are financial benefits to the NHS if overtreatment and any complications that result could be reduced.

35

Salopets I echo your sentiments regarding genetic disposition. They have barely scratched the surface regarding genetics and disease and yet they speak with such fullsome pomposity on the issue as if it were all 100% cut and dried. Lifestyle and environmental factors may increase risk of developing certain cancers but I firmly believe that a genetic propensity to develop cancer exists in the first place. I am the carrier of a chromosome problem and as such am under a geneticist (with regard to fertility problems). I know that my problem carries an increased risk of developing leukaemia. Is it connected to the BC? They simply don’t know yet - that is the answer you will get from the geneticist.
Why the hell don’t oncologists and geneticists speak to one another?

I am torn over the issue of screening. I had a lump 12 years ago aged 32. It was a benign lump with “abnormal cells”. Maybe today they would have a better path status for it - maybe it would be called DCIS - but back then it was simply described as benign. I assumed that following its removal I would be closely monitored and offered screening. Instead, the surgeon advised me to wear a good bra (tsk!) and be “breast vigilant”. When I suffered breast pain 5 years later and demanded a mammogram I was treated like a buffoon and bullied by a truly obnoxious surgeon who told me that I was taking up the time of women “who actually have cancer.”
Boy would I like to meet him now.

When I was diagnosed last year the tumour appeared directly beneath the scar of the “benign” lumpectomy. Clearly the 2 events were connected and I regard my cancer now was a direct failure of that primary treatment.
When I have discussed this issue with my surgeon and question why I wasn’t monitored a bit better she shrugs and says “Well, you found it anyway.” True - but potentially it could have been found earlier.
Had I been offered annual mammograms from age 32 I wouldn’t have hesitated in taking them. And maybe I wouldn’t be in this position of having invasive cancer right now.

36

I would like to see much more research done on precancerous cells and the role of the immune system. why is it some people can contain potentially cancerous cells and live along side these without developing full blown cancer?
The immune system is fantastically complicated and so little is really known or been researched about it.

37

In that very interesting Spiked essay Baum makes the claim (referenced from Should I be tested for Cancer?, H Gilbert Welch University of California Press, 2004) that “there is now clear evidence that anything between 10 and 50 per cent of invasive cancers detected and treated radically as a result of screening would never threaten life.”

I would really like to see the data that supports this. While I can understand that treatment of pre-cancer DCIS may have a question mark over it, I am surprised to hear that INVASIVE cancers may also be non life threatening. And 50% is a massive claim.

Does anyone have Welch’s book? Or any further information on this?

38

As someone who had no palpable lump, thickening or any other symptom, I can only say I was ‘grateful’ that my Grade 3 aggressive cancer was picked up by 'routine ’ mammogram.

I have always been healthy and there’s no family history of BC in my family so I had tended to be somewhat sceptical about sceening (especially as a close friend of mine died from BC - detected 6 months after a 'clear" mammogram)

I would be interested to see the stats for BC, as opposed to DCIS, detected by routine sceening.

39

This is a long post with lots of things to think about.

The NHS Breast Screening Programme’s stats on screening detected cancers and DCIS are in NHSBSP61. Just Google it and you can read it.

Re 10-50% of invasive cancers being non life threatening, I don’t have any detail on that, but some scientists have the theory that some invasive breast cancers can regress.

stopbreastcancer.org//index.php?option=com_content&task=view&id=922

Seems logical to me that there could be something in this. Our bodies have evolved defence and immune systems to kill off cancer cells that are sometimes created as a normal part of tissue replacement. I think screening programmes send the subliminal message that our bodies are pretty useless at dealing with very early stage abnormalities. But there’s no clear evidence to back that for breast disease because active monitoring vs treatment has never been studied in a proper clinical trial.

Lifestyle has been mentioned in this thread. I believe that it is also relevant that we grow up in a more oestrogenic environment (through human activities) than previous generations. Maybe this is contributing to the increased incidence of breast cancer and the fact that doctors are now seeing a higher proportion of hormone positive breast cancers relative to hormone negative. There is a theory that progress in diagnostic pathology might partly explain this increase in proportion of hormone positive.

According to NHS Choices:

nhs.uk/news/2009/02february/pages/breastcancerscreening.aspx

“Many of the harms associated with screening relate to the uncertainty surrounding a diagnosis of DCIS that has been detected by screening. Only half of the women diagnosed with DCIS will go on to develop invasive disease. However, it is not possible to know who will develop it, so all women with screen-detected DCIS are treated in the same way with surgery, radiotherapy or chemotherapy. For women who would never have gone on to develop breast cancer in their lifetime, these are
unnecessary treatments and the harms associated with them outweigh the benefits”.

Therefore in the NHS’s own words, a woman diagnosed with DCIS is less likely to develop invasive breast cancer than a woman who carries a defective BRCA1 or BRCA2 gene (50-80% chance of developing invasive breast cancer in her lifetime) - Cancer Research UK

cancerhelp.org.uk/help/default.asp?page=5689#how_much

It’s interesting that NHS Choices says that only half the women diagnosed with DCIS will go on to develop invasive disease, yet NHSBSP61 says that 69% of DCIS diagnosed in the UK is “high grade”, implying that all these cases would become invasive if left untreated. Presumably whoever wrote the NHS Choices Information has not read NHSBSP61.

Correct me if I’ve got any of this wrong, but women with a suspected family history of breast cancer can choose whether or not to be tested for defective BRCA1/2. They are counselled before testing. If found to carry one of the defective genes, they can choose to be monitored and may wish to have prophylactic mastectomy. They are given information and counselling every step of the way.

By contrast, previously healthy women diagnosed with DCIS (a condition they will have never heard of if they have only read Breast Screening - The Facts) at screening are steered towards surgery and possibly radiotherapy and hormone therapy (strange that NHS Choices mentions chemotherapy for DCIS, but not hormone therapy). Mastectomy (and indeed lumpectomy) for DCIS is effectively prophylactic surgery for some women, but handled in a very different way to prophylatic mastectomy for BRCA1 and BRCA2.

The result is that many women treated for screen detected DCIS naturally believe that their lives were saved. However another way of looking at this is that the surgery has virtually eliminated the risk of them developing invasive breast cancer that, according to the NHS, they were at less risk of developing than someone with defective BRCA1 or BRCA2.

This challenges my sense of logic and fairness because of the lack of full and impartial information given to healthy women to enable them to make an informed choice as to whether to accept their screening invitation.

Contrary to reports in February, the NHS has NOT ripped up Breast Screening - the Facts. It is alive and well and still says nothing about DCIS

cancerscreening.nhs.uk/breastscreen/publications/ia-02.html

If women want to read about DCIS, there is information on the NHS Breast Screening website. But that’s no use to women who don’t have access to the internet.

40

Daphne, that’s for all the information, will have a good read and get back to you
Best wishes
Leadie