Jane's partner has asked me to post this message from Jane. Her funeral is on Monday 14th December in Winchester. If any of you would like to attend her funeral or pay your respects in some other way, please PM me and I will put you in touch with Jane's partner. She has asked me to pass on her gratitude to you all for the love and support you gave Jane.
Here is Jane's message:
As many of you know I never found anything positive or uplifting about having breast cancer....nevertheless getting breast cancer in the age of the internet has meant a support and information network which was unknown 15 years back. Thank you to everyone who has helped me on these forums since I first logged on in February 2004. Thank you for your support and information, your kindness and laughter. Thank you for great discussions and debates..
My death is but one of the 12,000 deaths from breast cancer this year. More than 45,000 women will face diagnosis in this time. My death is unremarkable. I am 60, not a bad age, even in the west, but still a premature death. Premature too are the numerous deaths from breast cancer of young women with young children. They are there, unnamed in the statistics.
I’d like to think that among those of you reading of my death today are some young women..... newly diagnosed with triple negative breast cancer, the relatively unusual type I had. Today you are very frightened, crying and confused. But I want to imagine that you are going to be all right and that after your treatment is over you will decide to get involved in cancer campaigning...but not for you are the appearances in Fashion shows, not for you fundraising at pink pampering parties, not for you airbrushing the reality of this disease into some designer must have condition. You will decide on a harder more radical route...and a movement will begin to challenge governments, and research scientists, the medics and the charities. You won’t be smiling sweetly about good 5 years survival statistics...you’ll be saying that 12000 deaths a year is not good enough, that effective prevention and treatment, let alone a cure, is barely off the starting block, that this is awful and it has to change. There was the whisper of such a movement recently...I hope the movement promised comes to fruition with determined committed campaigners.
Winding forward to say 2050 and I hear you talking to your grandchildren about the old days when breast cancer still killed, and generations of women died years too soon. For now in 2050 few people get breast cancer and no one dies of it any more.
This is my hope, my hope for all your futures. Please smile and raise a glass for me in that hope. But avoid soppiness, or any references to bravery and fighting....there were none. Like the thousands before and after me, I simply did the best I could to live as well and as long as I could. We are ordinary women dealt a bad hand by breast cancer.
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I met Jane through the Breast Cancer Care Forums early in 2004. She had been diagnosed with Breast Cancer in October 2003, me in December 2003.
I knew from her postings that she was intelligent, forthright and had refreshingly different views about breast cancer, but I was a bit scared of dipping my toe in the water and engaging in discussions with her.
But I did, and it was enlightening, liberating and enjoyable. There were stimulating debates covering Pink October, dairy free diets, complementary therapies, positive thinking, the cancer charites, breast reconstruction, assisted dying, doctors, breast screening. Jane's views were always incisive, thoughtful and she had a gift of succinctly expressing the views that so many people shared, but perhaps could not communicate so effectively.
Some people strongly disagreed with some of Jane's views, but I believe most of them still liked and respected her. I think we all experienced a frisson of excitement when we saw a new post from Jane.
Jane was diagnosed late with the type of Breast Cancer which we now know as Triple Negative. She worked to raise awareness of this variant of the disease with breast cancer charities and she provided immense support and advice to other people diagnosed with Triple Negative Breast Cancer.
It was a great pleasure for me to have met Jane in person at Breast Cancer charity meetings and I enjoyed a visit to Jane's and her partner's home in 2008. We planned to meet again earlier this year, but sadly, it was not to be.
It has been a great privilege to know Jane and I will miss her. My thoughts are with her and her partner.
I spoke to R this evening on the phone and she has asked me to pass on her gratitude to you all for your love and support for Jane.
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Apologies for deviating somewhat from the thread, but it's never been satisfactorily answered why we have UK Breast Cancer Charities (notably Breast Cancer Care and Breakthrough Breast Cancer) competing against each other for funding throughout the year, particularly in October.
If we had just one major Breast Cancer Charity with several departments providing emotional support, information and research, we might see a more considered, thoughtful and tasteful approach to fundraising that would be less likely to offend people. And better value for the money raised.
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Information published by the BBC last year.
Here's some information about drugs (some over the counter) that may reduce the efficacy of Tamoxifen.
None of this information replaces guidance from your own doctors, but can be used in discussion.
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This article in the BMJ by the President of the Royal College of General Practitioners is interesting (to read the full text, you need to be a subscriber, but the reduced text gives a flavour). The rapid responses to it are also interesting, particularly the one from the lawyer:
Those of us who have had breast cancer form our views on the Breast Screening debate based on our personal experience, but Breast Screening is aimed at women who have no reason to suppose they have breast disease.
The actual risk to women of developing breast cancer needs to be put into perspective. Most women do not develop breast cancer. Approximately 90% of women who present with symptoms at breast clinics do not have breast cancer. These aren't reasons to be complacent, but I think it is perfectly reasonable for a healthy woman to weigh up the perceived benefits of screening - opportunity to identify DCIS and cancers that may cause her harm and have cancer treatment, against the harms of screening - cancer treatment for some conditions that would never harm the woman during her lifetime and quality of life issues caused by the aftermath of treatment that may have been unnecessary. Yes there's the problem that cases that could be left can't yet be safely identified, but life is full of uncertainties.
People who are ill are told of the potential harms of the treatment as well as the benefits, and when offered surgery they must sign a consent form. Yet healthy women are denied the opportunity to provide informed consent to be screened because they are not given full information on harms as well as benefits.
If a healthy woman has access to unbiased information and chooses not to be screened because she would rather wait to see if she develops any symptoms of breast disease, it seems to me a perfectly reasonable decision. Whether or not I would make the same decision is irrelevant. What's important is that screening invitations are handled ethically and women get the information they need to make up their own minds.
I agree age is certainly a factor - being diagnosed with DCIS at 50 could be quite different to being diagnosed with it at 70 in terms of prognosis. This raises the question of whether Breakthrough Breast Cancers' campaign to ensure elderly women receive the same treatment options as younger women might not actually be quite as helpful as it seems if clinicians, fearing allegations of age discrimination, steer more elderly women to have treatments that they don't need leading to destruction of their quality of life and maybe premature death.
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Jane, I said this to you in an email only last week:
"Your description of your condition demonstrates how regional recurrence in some ways is worse than mets in brain, lungs, liver or bones. If the cancer is restricted to one organ, there seem to be more treatment options that will manage it for longer and I suppose when the drugs stop working, the progression of the disease is more predictable. I may be spouting rubbish, but that's how it seems to me."
Seeing what I wrote in the context of what people have said here makes me realise that it is futile to spend time speculating whether one person's regional recurrence is somehow less scary and life threatening than someone else's liver mets (or even vice versa). Regional Recurrences and Mets are incurable. As Kay says, peer support is far more about individual approaches to illness than the degree of advancement of the disease as perceived by well meaning BCC people. And It is totally inappropriate for anyone other than a patient's medical professionals make judgements on how "advanced" someone's cancer is.
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Thanks Anne, I agree secondaries patients have to prioritise the stuff that's really important and I understand that there's a very good case for staying small. Also it's important to balance what you try to do with members' health.
My thoughts are if you get your group going and agree the priorities, that's the time to look at whether other organisations like ICPV can help you achieve specific goals faster than if you did it on your own.
We're not going to try to interfere with what you want to do. Just call on us as and when you feel it might help and we can discuss.
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Hello all. It's been really interesting reading your posts. Much of what you say strikes a chord with primary as well as secondary patients.
I have a couple of suggestions:
1.What comes across really strongly is frustration that there is no independent, radical breast cancer advocacy group in the UK. The good news is there is. We are called ICPV - Independent Cancer Patients' Voice. It's early days but we have a lot of interest from researchers and medical professionals, including those involved in research into metastatic breast cancer. Some of us have done Project Lead training with the National Breast Cancer Coalition and one of the things they teach us is to work with scientists to promote research into the questions breast cancer patients want answered. I think we are pushing at an open door. It seems to me that some of you are very motivated to form your own advocacy group for secondary breast cancer. If you do, ICPV would be very interested in collaborating with you to promote research into metastatic disease.
We have met both Breast Cancer Care and Breakthrough to tell them about us and both organisations have been very receptive about exploring how we can work collaboratively with them, while remaining independent.
I'm never sure whether I'm going to get moderated if I post a website address so I'll play it safe and say if you do a UK search in Google for Independent Cancer Patients Voice, our website should pop up. And you can email us from there.
2. If you want to create your own discussion group, you could try Google Groups. ICPV has got one. It has a security feature that enables you to ensure members join by invitation only, therefore it is completely private. As well as having discussions, you can share information by uploading files, and linking to research papers on the internet. If anyone wants to set one up, PM me and I can send you more details.
ICPV is not the first independent patient advocacy group in the UK. There are others I know about - Breast Cancer UK and their No More Breast Cancer Campaign, the Scottish Breast Cancer Campaign, IBC UK campaigning for research into Inflammatory Breast Cancer and I'm sure there are plenty of local advocacy groups like the Breast Cancer Unit Support Trust (Google bust bristol)It started off in 1991 as a fundraising organisation supporting its local breast unit, and has extended its remit to become a key stakeholder working with PCTs, NHS Trusts, Clinicians and Local Authority Overview and Scrutiny Committees on a Review of the future of local Breast Care Services.
My experience is that when you get together with like minded people to change things for the better, you realise how talented people are in so many different ways. That really helps to motivate everyone and makes a difference.
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If there was a Clinical Trial that randomised women with DCIS into those that were offered conventional treatment and those that were actively monitored, perhaps enough women would be willing to be randomised to see what happens after a DCIS diagnosis so that more would be discovered about how to identify disease that won't progress.
This is what the ProTect study is doing for men:
To twist the saying - shouldn't it be a case of what's sauce for the gander is sauce for the goose?
Why isn't there a similar study for DCIS? Perhaps it's more difficult to actively monitor women. The men get a blood test every 3-6 months. It would be undesirable to give women a mammogram that frequently because of the radiation risk. But what about ultrasound or MRI or perhaps blood tests? Perhaps the possible complications of prostate surgery for men (impotence, incontinence) are regarded as more distressing than possible complications of breast surgery. Therefore there's more willingness to find ways of avoiding overtreatment.
The ProTect study information says that there are no plans to introduce screening for prostate cancer in the UK because there is not enough evidence about treatment for the disease and that it has not yet been shown that screening for prostate cancer is a good idea.
If we knew what we know know about breast screening overdiagnosis and overtreatment in the late 80s I wonder whether Breast Screening would have ever been introduced back in 1988?
Without Clinical Trials for DCIS and women willing to be randomised to participate in them, no progress will ever be made on overdiagnosis and overtreatment.
If I'd been diagnosed with DCIS (instead of DCIS & invasive), I don't know whether I would have consented to be randomised into a trial to compare treatment with active monitoring. But it would have been good to have the option.
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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.
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:
"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
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
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.
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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.
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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.
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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"
"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:
Also see Professor Stephen Duffy's comments on the Breast Screening Debate:
"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.
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Google "Spiked Online" and check out the 27th April piece by Prof. Michael Baum "why I'm still a screening sceptic" and make up your own minds.
See the section "The nature of over-diagnosed cancers" This isn't just about DCIS.
I think that it is perfectly natural for anyone diagnosed with a screening detected condition to want the treatment on offer. But I hope the NHS and Breast Cancer Charities will openly accept that there is overdiagnosis and overtreatment and this will stimulate research into better ways of predicting which cases of DCIS and invasive cancer will do no harm if left alone and which require treatment.
I think improving screening technology is no good unless the ability to differentiate harmless conditions improves at the same pace. Where do you draw the line? How do you know when some screening detected abnormalities are being dealt with perfectly adequately by the body's defence mechanisms? How do you know whether there's a risk that the biopsying of a non invasive condition triggers it to become invasive and grow?
Do you want your daughters and grandaughters to be subjected to the same amount of uncertainty about breast screening as there is at present?
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Sure it's uncomfortable to think about the possibility of unnecessary treatment for conditions detected by screening.
But shouldn't women be given the full facts about the pros and cons of screening to decide for themselves whether they want to be screened?
Isn't it for us, as individuals to think about the possible consequences of breast screening and decide what level of risk we are prepared to accept? I don't think it's the role of doctors, the media, breast cancer charities and other people to do that for us.
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Mole highlights a couple of important points:
1. The pressure to take up screening appointments - so that anyone who looks at the facts and decides not to be screened is likley to be made to feel irresponsible.
2. The lack of statistical integrity that occurs when people who should know better compare 5 year survival rates pre screening programme with 5 year survival rates post screening programme. It's not comparing apples with apples.
Obviously the survival rates post screening will improve because you are including a whole lot of women with early stage, screen detected cancers whose cancers might never have been detected without screening(or would have been detected symptomatically at a later stage), with women whose cancers were only detected by symptoms.
It would be staggering if most of the screen detected early stage cancer patients didn't survive at least 5 years. (btw, DCIS is counted separately and not included in the 5 year stats)
This artifical skewing of survival statistics has a knock on effect on mortality stats, because it muddies the waters and makes it very difficult to unravel to what extent improved survival and reduced mortality are the result of screening and to what extent the result of improved disease management and treatment.
I think the best way to find that out is to only compare symptomatic patients now with symptomatic 20-30 years ago. But nobody seems to want to do that.
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The only certainty with this is the huge amount of uncertainty!
1. We really need a study on DCIS (and possibly grade 1 invasive cancers) like the ProtecT Study (Prostate testing for cancer and Treatment). It's taking place at 9 UK Centres to compare:
Surgery (radical prostatectomy), Radiotherapy (radical conformal) and Active Monitoring (monitoring with regular check-ups).
Women need a study that compares current treatment for DCIS with active monitoring. There's already the NHS Breast Screening Programme Sloane Study looking at improving quality of care for Screening detected DCIS, other non invasive breast cancer (LCIS, I guess) and atypical hyperplasia. But I don't believe it's studying active monitoring.
2. There is a study taking place on follow up for Breast Cancer called ibreast looking at comparing nurse-led, radiographer and GP follow up.
Breast clinics are being swamped with new referrals and follow ups so the study is looking at the best way to manage follow ups in the future. I believe there are opportunities for patients to be involved in ibreast, or at least find out more about it. So if you are interested, pm me. I know the investigators.
I don't think anyone is suggesting that there should be no follow up at all because breast cancer can come back many years after original diagnosis. Also if you don't follow up, how do you know whether or not the treatment you gave actually worked? Follow up is an important part of research.
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I'm an optimist, but also a realist. I think the NHS will resist any radical rewrite of the leaflet.
There's too much at stake in terms of investment in the Breast Screening Programme - roll out of digital, extended age ranges, NHS targets for screening uptake and loss of face for those who don't want to admit that screening is not quite as wonderful as they've made it out to be.
There's as much politics to all this as science.
Also there is a view from some experts that it will take time for the concept of screening over-diagnosis and over-treatment to become accepted by the public because it is a new concept for many.
For this reason, I think a radical rewrite of the leaflet will face hostility from some women and patient representatives.
But for ethical reasons, it must be done. Women are entitled to full, unbiased, evidence-based information.
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