Breast Cancer Misdiagnosis in Ireland

by Alison Kelly Sun Nov 25, 2007 21:14

Saturday, November 24, 2007
The darkness below the surface.

Yesterday, Friday 23rd of November, I released the statement published on this page to the press. My reason for doing so, was that I felt that the HSE was avoiding answering my complaints regarding my misdiagnosis, and had no intention of making a public statement. Since alerting other women in the north east, to the issues involved, is my main reason for speaking out at this time, I took the decision to release the story myself. I sent the statement to several newspapers, both local and national, and to RTE. I had some conversations on the day with several journalists.

Then yesterday evening, an interesting development occured. I received a call from the HSE, whose spokesperson testily informed me that members of the media had been in touch, requesting a statement regarding my good self. The spokesperson, told me that the HSE had in fact concluded its investigation into the first aspect of my complaint. He said that an original ultra sound scan, which had been taken at my first visit, had been re-examined by a Radiologist working in the hospital, and that she agreed with the original analysis - in her opinion, the scan did not show the presence of a cancer. I told him that i did not find an internal review acceptable, and he agreed, after some discussion, to authorise an external review of the scan. I pointed out to him that even if an external review agreed that the cancer had not shown up on the scan, that this in itself, was fairly meaningless, since scans often do not read tumours correctly, especially in the breast tissue of women under the age of 50- scans have a failure rate. He said he could not comment upon that, as he is not a clinician.

A point worth making in relation to this issue, is that in 2005, when I was finally diagnosed, a Mammogram taken as part of my examinations at the hospital, also did not show that I had a tumour, and the tumour by that stage was 5 cm in Diameter. Obviously, my breast tissue is so dense, that it was not possible for a Mammogram or Ultrasound to read the presence of tumours. I am not alone...this would be true for most women under 50.

This problem with such tests, points to the necessity for good judgement of the examining clinician. Only physical examination, by an experienced consultant, can give the additional information which may suggest the possibility of cancer being present, thereby leading to further testing in the form of a fine needle aspiration or biopsy.

I also reminded him, that the doctor who examined me just before that scan was taken, had detected the lump in my breast, and had even written a letter to my GP, stating that a lump was present in my left breast, but he felt it was benign. He said again, that he could not comment upon that. I asked him if he could explain to me how I had been diagnosed in 2005 with a grade 3 advanced cancer tumour, in exactly the same place in my breast as I had originally presented with in 2003, when I was told the lump was benign. Again, he felt he could not comment on that.

I inquired about the progress of the other aspect to my complaint, ie, that i had required an investigation to be carried out into whether i had been overdosed with chemotherapy. He informed me that the oncologist who had treated me - ie, the one who had been responsible for prescribing the dose of chemo which almost killed me - was reviewing my case. I could hardly believe my ears. I told him, again, that an internal review was completely unacceptable to me. He agreed to an external review.

It seems clear to me at the time of writing, that my decision to go public with my experience, has certainly affected the both the speed, and manner in which the HSE is choosing to handle my complaint. However, my expectation, is that I will finally be notified that the HSE does not feel a Misdiagnosis occured, or an overdose. The reason why is very simple. If the HSE was to admit my misdiagnosis, there is a possibility that other people will start to complain and protest about Misdiagnosis and Malpractice.....and heaven knows where that could lead. This hospital has been at the centre of several scandals already - the Dr Michael Neary debacle being a case in point, and has also recently come out with a very poor rating regarding hygiene, or lack of it. Can it really handle another scandal?

An article by John Downes appeared in the Irish Times today, about my case, stating that the HSE has agreed to an external review. How many other women who attended Our lady of Lourdes Breast Clinic have had the same experience as this....I cannot help wondering as I lie in my bed at night, feeling grateful to be still alive, if there are other women walking around the town I live in who have been told like me, not to lose a nights sleep over a lump in the breast, and who may well be developing something sinister.

The time has come for open and very honest discussion about cancer services, and treatment. I feel there is a lot of darkness hidden below the surface. It needs to be examined.

by Dr. Anal Sphincter MD Sun Nov 25, 2007 22:32

The stories of incorrect diagnoses of women are indeed disturbing. The cause seems to be a combination of incompetence, normal human-error, and lack of resources. Incompetence is used in the non-judgemental sense in that it appears that there has been a failure to ensure that the medical personnel doing the screening are trained in the best contemporary methodology. Even with best practice in the best hospitals there are a small statistical number of mis-diagnoses due to human-error. Finally, there seems to have been a decision to allow the screening services in non-designated centres to wither on the vine and continue screening pending the commissioning of the centres of excellence.

On the other hand, Irish women are comparatively lucky. Prostate cancer, a male disease, kills as many men in Ireland as breast-cancer kills women, possibly more (proper statistics are unavailable for recent years and PC is increasing everywhere in the civilized world - particularly in men under 60). For more than a decade a screening-test for prostate-cancer has been available - the PSA blood-test. Exactly zero public health resources have been made available for PSA screening. If men wish to have the test they will have to pay their GPs or the pathology departments in their local hospital from their own pockets. Most men don't even know about the test because, unlike breast-cancer screening, no public resources have been made available to alert men over 50 years of age as to the necessity for regular PSA testing. Civilized countries have free PSA screening and free breast-screening. In Ireland, someone has made the decision that mens' health isn't worth the money. This is the real health-scandal.

by Damien Mon Nov 26, 2007 01:05

Alison,

Firstly the trauma you have been through over the last few years has been immense, and you have my deepest sympathies. However some of the points you have made are factually incorrect, and to leave them unrefuted could pose a danger to other persons contemplating their options upon diagnosis of Cancer.

"Women who take all the treatments on offer, often have recurrences of breast cancer, and 43% of them will die of cancer"

Cancer Research UK estimate twenty year survival rate 50% higher than the figure you suggest.[1]

"Radiotherapy improved the overall survival rate for breast cancer by only 2 %,"

This is a very difficult figure to justify. I'd be interested to see what clinical evidence which supports this. Perhaps the closest we can get to determining this figure is to look at the improvements in survival rates associated with developments in the field of oncology. For example, the five-year survival rate for women diagnosed in England and Wales in 2001-2003 was 80%, compared with only 52% for women diagnosed in 1971-1975.[1]

"‘The Moss Reports’ which is compiled by an American medical doctor called Ralph Moss,"

Although Moss claims to be "a cancer consultant for three decades", he is not a medical doctor in any sense of the word. His PhD is in classics. He charges victims of cancer over 300 dollars for his "research" which has never been peer reviewed in medical journals. [2]

[1] http://info.cancerresearchuk.org/cancerstats/types/brea...ival/
[2] http://www.cancerdecisions.com/index.html

by Aragon Mon Nov 26, 2007 07:10

Dr Moss is no quack as Damien is implying above. He is an experienced academic himself who has extensively researched the medical research -i.e. he is not basing his opinion on personal opinion but on those of the medical profession itself. There are many medical doctors who support what he has to say:

"Dr. Moss' position on chemotherapy is supported by many major students of the study of cancer treatment. Following are some examples: Dr. John Bailar is the chief of epidemiology at McGill University in Montreal and was formerly the editor of the Journal of the National Cancer Institute. In 1986 the New England Journal of Medicine published an article by Dr. Bailer and Dr. Elaine Smith, a colleague from the University of Iowa. Bailer and Smith wrote: "Some 35 years of intense and growing efforts to improve the treatment of cancer have not had much overall effect on the most fundamental measure of clinical outcome - death. The effort to control cancer has failed so far to obtain its objectives.

Dr. John Cairns, a professor of microbiology at Harvard, published his view in Scientific American in 1985, "that basically the war on cancer was a failure and that chemotherapy was not getting very far with the vast majority of cancers."

As far back as 1975, Nobel Laureate James Watson of DNA fame was quoted in the New York Times saying that the American public had been "sold a nasty bill of goods about cancer."

In 1991, Dr. Albert Braverman, Professor of Hematology and Oncology at the State University of New York, Brooklyn, published an article in Lancet titled "Medical Oncology in the 1990s," in which he wrote: "The time has come to cut back on the clinical investigation of new chemotherapeutic regimens for cancer and to cast a critical eye on the way chemotherapeutic treatment is now being administered."

Dr. Braverman says that there is no solid tumor incurable in 1976 that is curable today. Dr. Moss confirms this and claims that the greatest breakthrough in the objective study of chemotherapy came from a biostatistician at the University of Heidelberg, Dr. Ulrich Abel. His critique focused on whether chemotherapy effectively prolonged survival in advanced epithelial cancer. His answer was that it is not effective. He summarized and extended his findings and concluded that chemotherapy overall is ineffective. A recent search turned up exactly zero reviews of his work in American journals, even though it was published in 1990. The belief is that this is not because his work was unimportant -- but because it's irrefutable."

Like Alison Kelly, Ralph Moss has taken an independent and intelligent interest in health outcomes for people with cancer. Review of his work below by a doctor who acknowledges, as Moss does, that although chemotherapy is effective in a small number of cancers, it is pointless in terms of most of them. When that is considered together with the serious, potentiallly life threatening side effects which result from the treatment, then chemotherapy is clearly counterproductive for most people. There is of course huge money in the cancer treatment business and a powerful coalition of people who do not want us to start thinking critically about what they are doing with our health and with the vast sums of public money that goes on paying them to provide these treatments.

http://www.mercola.com/article/cancer/cancer_options.htm

by Alison Kelly Mon Nov 26, 2007 13:59

Excellent ! An honest and open debate about the efficacy of cancer treatment, hopefully, begins.

I take on board your comments Damien, however, they smack to me of the kind of brain-washing that the medical profession indulges in. And as for statistics - whatever your point of view, or mine, it will always be possible to find statistics to suit your perspective, and many sets of statistics conflict. For example, statistics regarding Radiotherapy presented by the medical profession, are usually inaccurate, because they fail to report the high level of death from heart disease experienced. These deaths are registered as death from heart disease,not cancer, so the person who has died, is still considered to have been 'cured' of cancer from a medical perspective. The five-year survival rates are also a big public relations con - many people die from cancer after five years, including women from breast cancer. The medical profession are not so quick to report that particular fact.

Again, I repeat, anyone who has been diagnosed with cancer, is well advised to educate themselves, and take as much personal responsibility as they can to return to good health. There are many good books on the subject, one of best being 'Cancer and Leukemia' by Jan de Vries. It is available from most health food shops or online. It gives a very good overview of holistic approaches to healing cancer.

As Aragon is quick to point out, Ralph Moss is no Quack - all of his articles are correctly referenced,and I have cross referenced them myself, and they certainly stand up to scrutiny. I myself have not paid a cent for any of his articles, because he provides a free newsletter, which makes for very interesting reading. - anyone can access this completely free via their email address signed up to his site.

by Alison Kelly Mon Nov 26, 2007 14:19

Another thought that occurs to me regarding Damien's assertion that the treatments work is this: They may work for some people, but how Damien do you account for the fact that at least 11,000 people, male and female are dying every year in Ireland of cancer. Have the treatments worked for them, or do you also dispute that figure? Which parallel universe precisely are you living in?

by Dr A. Sphincter MD. Mon Nov 26, 2007 15:59

Everyone dies. Ultimately (although I am working on this).

Cancer treatment does work to the extent that for an increasing percentage of cancer-sufferers, treatment buys a significant increase in lifespan and quality of life. This is particularly true in the case of childhood cancers. Five-year remission-rates for breast-cancer in particular are significant. Treatment buys many people sufficient time to die of something else.

The improving statistics are of course muddied by the fact that cancer-rates are increasing because of environmental degradation and longer life-expectation generally. If modern medicine were withdrawn entirely (not just cancer-treatment) one would be better able to see the real improvement in the prospects for cancer-sufferers obtained by medical and surgical therapies.

I think that it speaks eloquently that the 'authorities' quoted to belittle the successes of medical intervention are carefully cherrypicked against the vast weight of contrary evidence in the medical litrature, and are also all relatively ancient.

Incidentally, populations who inhabit environmentally pristine environments free from the scourge of both industrial pollution and modern medicine typically have a life expectancy (where they manage to survive their first 5 years of life) of less than 30 years.

by Damien Mon Nov 26, 2007 23:16

Alison,

If you are so convinced that the treatments don't work, then why are you so upset at not being diagnosed early ?

by Alison Kelly Mon Nov 26, 2007 23:58

I am upset at not being diagnosed early, because, obviously, early diagnosis, would have meant that I would have had the opportunity to hold onto my left breast, and would not have been at the same risk of the cancer spreading. An early diagnosis, would also have meant that it would not have been necessary to take the risk of developing a life-threatening Neutropenic sepsis as a result of chemotherapy. It seems very clear to me that the earlier a diagnosis takes place, the easier it is to treat a cancer. Surely these things are self evident?

However, just because I would have preferred an early diagnosis, it does not necessarily follow that the treatments on offer after such a diagnosis, have to be used, or chosen by me. You may be interested to know, that before I had such a dreadful experience with chemo, I was quite happy to go along with the whole shebang....I had agreed absolutely, that yes, I would have 6 months of chemotherapy, 6 weeks of radiotherapy, and take Hormone Therapy.

The turning point for me came, with the sheer hell of the side effects of my one and only dose of chemo. The really crushing part of it for me, was that no one, at any stage, had been honest with me, about the potential side effects of the drugs given to me, and to be frank, I was appalled by that. I felt that I had been treated very disrespectfully. I felt that I had been abused by people who purported to be attempting to save my life, and I felt devastated by that. Before that experience happened, I been in a very positive frame of mind for a woman who had just been diagnosed with advanced cancer. I believed that I had a good chance of recovery if I adopted the right attitude to what was happening to me. After the chemo, I felt the opposite. I felt that i had suddenly entered into a very dark place. I felt a very strong intuition kick in, which basically said, get the hell out of here..

I feel if you have cancer, you need to know it. What you decide to do about it, is a different affair altogether Damien. What i have decided to do about it, has worked so far for me. I feel very well, and people tell me that I look very well. My quality of life is very good, and I am probably more active than most other people my age. I am sure that I have made the right decision, for me. I feel if people want to go and take all the treatments that hospitals offer, then that is their right, and I would not presume to advise other people. However, I would like to see a little more honesty on show. Patients have the right to be informed of the risks they are taking with cancer treatments. If people want to go ahead on that basis, knowing the risks, fair enough. However, if people, choose, as I, and others in this country have done, to adopt a different approach which feels more life-affirming, is that not also a right? Is the fact that I am still alive and feeling good and positive about life not of interest to you?

You know, we can parry back and forth with clever arguments, statistics etc ( and believe you me lads, I'm only warming up, theres plenty more to come) but at the end of the day, I think it is important to remember that the cancer issue is about real human beings, who have to make decisions that they feel can live with, or die with, as the case may be. Dignity, Integrity, Honesty, ....what has happened to all these old values?

by Damien Tue Nov 27, 2007 08:39

"I am upset at not being diagnosed early, because, obviously, early diagnosis, would have meant that I would have had the opportunity to hold onto my left breast, and would not have been at the same risk of the cancer spreading. An early diagnosis, would also have meant that it would not have been necessary to take the risk of developing a life-threatening Neutropenic sepsis as a result of chemotherapy."

If you feel that Chemo and Radio therapy don't work, how would the risk of your cancer spreading been less? Are you know claiming that not only does the conventional treatment not work, but that you have some form of cancer cure?

by Alison Kelly Tue Nov 27, 2007 16:41

Regarding statistics quoted in my pieces, the following background information may be of interest.

The figures for the extremely low overall success rate for chemotherapy – appox 2% in terms of overall survival – come from a meta- analysis conducted by three Australian Oncologists, who published their research initially in the Journal of Clinical Oncology, volume 16, issue 8, December 2004, pages 549-560. This article contains a full breakdown for overall survival attributed to chemotherapy, for most common cancers, and makes for very interesting reading. This analysis shows clearly that actual benefit conferred by chemotherapy for breast cancer is 1.4% in terms of improving overall survival. If you contrast this with the risk of developing Neutropenic Sepsis, which can, and sometimes is fatal, from chemo, that risk is reckoned to be 4-5%. Add into this picture the risk of developing heart disease, or a secondary cancer, which are known long term side effects of particular chemo drugs ( including the ones I was given), and really, it’s a no-brainer in my opinion.

Regarding the Radiotherapy figures, the following is the background to the figures I have given. Research appeared in The Lancet Oncology of May 20th 2000 (Lancet. 2000 May 20;355(9217):1739-40. ) which was a meta-analysis on Radiotherapy for early Breast Cancer. The following is a synopsis:

The following outcomes were evaluated in this meta-analysis:
• Local breast cancer recurrence - the number of women who have a recurrence of breast cancer in the same breast as the original tumor, the lymph nodes near the breast, or the chest wall.
• Breast cancer mortality - the number of women who die from breast cancer in a specific period of time.
• Non-breast cancer mortality - the number of women who die from causes other than breast cancer in a specific period of time.
• Breast cancer survival - the number of women who do not die of breast cancer in a specific period of time.
• Non-breast cancer survival - the number of women who do not die from causes other than breast cancer in a specific period of time.
• Overall mortality - the number of women who die from any cause in a specific period of time.
• Overall survival - the number of women who do not die from any cause in a specific period of time.
The main findings of the meta-analysis included:
• Radiotherapy reduced local breast cancer recurrence by two-thirds after 10 years of follow-up and also after 20 years of follow-up. The absolute reduction was smallest for node-negative women who underwent mastectomy with axillary clearance (removal of local lymph nodes) because these women had a small risk of recurrence even without radiotherapy.
• Radiotherapy reduced 20-year breast cancer mortality by 9%. The breast cancer survival rate with radiotherapy was 53.4% and without radiotherapy was 48.6%. However, radiotherapy increased 20-year non-breast cancer mortality -- mainly mortality from heart/vascular disease -- by 16%. The non-breast cancer survival rate with radiotherapy was 69.5% and without radiotherapy was 73.8%. The vascular deaths may be due to the damaging effects of radiation on the heart and arteries.
• Thus, for all women combined, radiotherapy did not significantly reduce overall mortality. At 20 years, overall survival was 37.1% with radiotherapy and 35.9% without radiotherapy.

• Analyses of the mortality rates in subgroups of women were statistically unreliable (the numbers were too small). However, the results suggest that radiotherapy may provide a net survival benefit to younger women (< age 50) at high risk of local recurrence (node-positive), while providing a net hazard to older women and to women of any age with a low risk of recurrence.
In summary, radiotherapy reduces breast cancer mortality but increases mortality from other causes. Radiotherapy may only provide a long-term survival benefit to younger women at high risk of local recurrence. The data from the meta-analysis indicate that 'improved control of local disease in early breast cancer implies...a moderate but definite reduction in the long-term risk of death from breast cancer.' In other words, radiotherapy reduces recurrence of breast cancer and reduces deaths from breast cancer. However, the data do not prove that reducing the risk of local recurrence causes a reduction in the risk of death from breast cancer.

An editorial, which appeared in the same issue of the Lancet as the meta-analysis, points out that radiotherapy techniques have evolved considerably since the start of the trials included in the meta-analysis, and that new techniques (e.g. electron beams with limited penetration) have been designed to minimize heart and vascular radiation exposure. If these new types of radiotherapy are shown to decrease breast cancer mortality and have no effect on heart disease mortality, such radiotherapy may increase survival for all breast cancer patients.
This type of large meta-analysis is ideal for answering broad questions, such as what are the overall effects of radiotherapy treatment. A meta-analysis combines many studies that may have different designs and may include different information. Thus, smaller questions are more difficult to answer since only a few studies in the meta-analysis may have addressed these questions. For instance, the meta-analysis on radiotherapy and breast cancer could not examine whether or not radiotherapy for the left breast (closer to the heart) is more hazardous than radiotherapy for the right breast. Data from non-randomized epidemiological studies indicate that radiotherapy for the left breast is associated with more heart disease mortality than radiotherapy for the right breast. However, these findings need to be confirmed in randomized clinical trials.
This meta-analysis highlights the importance of examining overall mortality, and not just breast cancer mortality, in clinical trials. It shows how a treatment may reduce deaths from breast cancer while increasing deaths from other causes. If all breast cancer patients were to die of treatment-related heart disease before they died of breast cancer, it would look like no one died of breast cancer; however, women would still be dying as a result of having breast cancer. As breast cancer activists, we are only interested in treatments that can truly extend and/or improve the quality of lives. Radiotherapy may improve quality of life by reducing breast cancer recurrence, but it has not been proven to reduce overall mortality in breast cancer patients.
This study also highlights an area worth further exploration: To what extent have treatment-related deaths affected U.S. breast cancer mortality trends? If there was an increase in the use of radiotherapy during the past decade, it may have reduced U.S. breast cancer mortality while increasing U.S. heart disease mortality.
With regard to overall survival from Cancer in Ireland, according again to a very recent study carried in The Lancet, (sorry don’t have time to correctly reference, but anyone interested can google it ) the proportion of patients with cancer who were alive 5 years after diagnosis was:
• 51.9% for women – Only Northern Ireland, Scotland, the Czech Republic and Poland did worse.
• 48.1% for men – a better result compared to the rest of Europe, putting Ireland in the first 12 countries.
• Survival rate for breast cancer was 76.2%
The US came top of the league, with cancer survival rates of 62.9% for women and 66.3% for men.

In this study, Cancer experts blamed low survival rates on late diagnosis and long waiting lists.

Regarding my reasons for regretting I did not get an early diagnosis, again, I will try to clarify my feelings. If I had been diagnosed early, and been found to have early stage breast cancer, it would have been likely that a lumpectomy would have been sufficient in terms of treatment. If the cancer had been small and had not spread, it may not have been necessary to go down the road of chemo or radiotherapy at all. Many women who have very small cancers are told it is not necessary for them to do that.

However, to be honest, I feel that I myself have more or less recovered from the feelings of upset that I had about misdiagnosis. The reason I have decided to speak out publicly about this issue, is that the hospital where I was treated has appeared on the safe list of hospitals for the treatment of breast cancer. What happened to me there, was not ‘safe’ from my perspective, and I believe that other people have the right to know about it. I also feel concerned that other women who were examined by the same consultant as me, may well be at risk, but have been given a false sense of security. I feel its important that if someone has symptoms, and they feel worried, they should seek a second opinion.

And as for if I feel I have discovered a ‘cure’….no, certainly not. The methods I have used to recover my health, have been used by many other people before me, and have been documented extensively, in many different countries, particularly in the US, where it appears that freedom of speech and choice, are respected more than in this country.

In just over two months time, at the start of February, it will be 3 years since I was diagnosed with advanced cancer. If I was still in the medical system, people would say I was in remission and doing very well. In a further two years time, again if I was still in the system, it would be the five year mark, and I would be told I was ‘cured’.

Time will tell the story I think.

by Damien Tue Nov 27, 2007 23:20

Alison,

If you insist on posting statistic after statistic, you should at least check your references. You cite :

"The Journal of Clinical Oncology, volume 16, issue 8, December 2004, pages 549-560"
Volume 16, issue 8 of The Journal of clinical Oncology was published in August 1998, not in 2004 and contains no abstracts which are even remotely similar to what you claim it says.

"appeared in Lancet Oncology of May 20th 2000"
There was no Lancet Oncology of May 2000. The first issue was in September 2000.

Are you just copying and pasting some quacks figures without bothering to check them yourself? That would be pretty dangerous.

Anyway even if these figures were posted in medical journals that doesnt make them fact - the whole point of these journals is peer review - so that other researchers and medics can asess the quality of the research, and determine if the information provided is likely to be accurate. Many,many published papers are are disputed and or disproven. That is the beauty of the system. Sometimes papers are even retracted by their authors when disproven - such as this famous case : http://www.newscientist.com/article.ns?id=dn4743 Other cases exist such as http://en.wikipedia.org/wiki/Jon_Sudb%C3%B8 who was struck off when it was discovered he fabricated evidence.

Also I don't understand why you are posting figures related to the numbr of cancer moralities - nobody disagrees on these figures.

by Alison Kelly Wed Nov 28, 2007 08:51

The research i have quoted certainily does exist - I think you have done possibly a quick panicky look in the wrong place. I was referring to the Australian journal of Oncology - I am aware that there is more than one journal of oncology. And as for the other Lancet Article, its available on several different medical sites online, if you want to spend some time genuinely looking for it. The research is certainly real, and i am sure that the people who compiled it would not be amused to hear you describing it as the work of quacks. I think you are exhibiting the kind of childish schoolyard like response that people sometimes indulge in when they have no genuine come back to the argument.

In any case, I want to state right here and now, that i am not going to indulge in any more tit for tat regarding research or statistics. I don't have to justify what i am saying. If anyone who reads anything I write has issues with it, they can go and check it out for themselves. The information is available for anyone who wants to read it on the internet, who has a free hour or two.

I know its hard when you have a certain mindset, to be able to see the other side of things, but if you don't even bother trying because it is more important to defend your point of view, then you will never broaden your perspective.

As for me, I have a life to live.

by Alison Kelly Wed Nov 28, 2007 09:03

Editorial
The emperor's new clothes - can chemotherapy survive?

Eva Segelov, Medical Oncologist, St Vincent's Clinical School, Sydney

Key words: antineoplastics, cancer.

(Aust Prescr 2006;29:2-3)

'An Australian study suggests that the benefits of chemotherapy have been oversold … Why has it been oversold? Are you suggesting that medical oncologists in Australia are just sort of marketing shysters or what?' These were some of the questions posed by Dr Norman Swan when he presented the Health Report on ABC Radio National on 18 April 2005.1 Dr Swan was quizzing Associate Professor Graeme Morgan, the lead author of a controversial article entitled 'The contribution of cytotoxic chemotherapy to 5-year survival in adult malignancies'.2 This article reported that chemotherapy has improved survival by less than 3% in adults with cancer.

These provocative figures were derived from a literature search of all randomised clinical trials reporting a five-year survival benefit attributable solely to cytotoxic chemotherapy in 22 major adult malignancies. The common malignancies of bowel, lung, breast and prostate were included. The total number of newly diagnosed cancer patients for each malignancy in 1998 was determined from cancer registry data in Australia and the USA. The absolute number to benefit was the product of the total number of patients with that malignancy, the proportion or sub-group(s) with that malignancy showing a benefit, and the percentage increase in five-year survival due solely to cytotoxic chemotherapy. The overall contribution was the sum total of the absolute numbers of patients showing a five-year survival benefit expressed as a percentage of the total number for the 22 malignancies.

Overall cancer survival, following all kinds of treatment, is approximately 63%. Based on the calculations in the study the contribution of chemotherapy to adult survival from cancer was estimated to be 2.3% in Australia and 2.1% in the USA. The authors, two of whom are radiation oncologists, but one of whom is a practicing professor of medical oncology, concluded that 'chemotherapy only makes a minor contribution to cancer survival' and 'to justify the continued funding and availability of drugs used in cytotoxic chemotherapy, a rigorous evaluation of the cost-effectiveness and impact on quality of life is urgently required'.

The paper attracted much attention. In the medical oncology community, there was much outrage and indignation at this 'misleading and unhelpful' paper. Associate Professor Michael Boyer, head of medical oncology at Royal Prince Alfred Hospital, Sydney, commented, 'The fact is that from a patient's perspective they are not really interested in how much chemotherapy contributes to the cure of all patients, what they are interested in is how much it will contribute to their particular disease and their stage of their disease … I don't think this paper helps from a patient's perspective. Similarly from a public funding, or public policy point of view, lumping everything together is not a terribly helpful way …'.1

Associate Professor Boyer raised concern about the study methodology and the fact that 'if you start … saying how much does chemotherapy add in the people that you might actually use it [in], the numbers start creeping up … to 5% or 6% …'.1 It is true that the paper used definitions of convenience and excluded certain cancers with high cure rates from chemotherapy, such as leukaemias, childhood cancers and other curable rare cancers. In addition, the study did not account for the contribution of chemotherapy in increasing the efficacy of other modalities, for example in 'downstaging' before surgery or when used concurrently with radiation. The data set, from 1998, does not reflect recent advances with more modern chemotherapy drugs, although again their impact on survival is modest.

The article did not aim to address quality of life or other benefits from chemotherapy, or any parameters relating to palliation, which after all is the aim of the great majority of chemotherapy. It also does not discuss the curative benefit of other drugs in the medical oncology armamentarium, such as hormone therapy or 'targeted' drugs, such as bevacizumab or trastuzumab. One should not throw the baby out with the bath water, so to infer that medical oncology has no role in the management of cancer patients would be mischievous. Similarly, the article discusses issues to be considered in the formation of public policy, rather than making any statements on the management of individual patients.

Individual patients are concerned about their own chance of survival. Many patients will accept chemotherapy despite the small absolute benefit in survival.3 A useful tool for adjuvant therapy for breast and bowel cancer, which uses a mathematical model for working out the benefit of chemotherapy, is Adjuvant! (www.AdjuvantOnline.com). Although such a model may show the small benefit, the patients and their families are often seeking a cure if at all possible. Their concerns are individual and immediate. They want to know the 'worth' of chemotherapy, but it is unlikely that the cost of the treatment is ever raised as a factor in an individual patient decision. Cost only becomes a significant issue if the treatment is not subsidised and the patient has to pay.

We are still left with the finding that the overall contribution of cytotoxic chemotherapy to survival in the 22 cancers reviewed in the study is less than 3%. Is this apparent heresy merely sour grapes from our radiation colleagues (who have previously shown a 16% survival benefit for radiation therapy4), or could it actually represent something close to the truth? At 2% or 6%, surely the message is the same. Modern Western society, with its obsession with cure at all costs and the focus on the outcome for an individual, has a track record of subverting community welfare on issues relating to 'big picture' sustainability.

Failure to come to terms with rationalisation of high cost medicine and the inability to convince multinational pharmaceutical corporations to provide drugs at a sustainable price will mean that our treatments are likely to have less, not more impact in the future, as only a portion of society will be able to afford them. Let us rise to the challenge rather than shrink from the spotlight. We have to hope that in the decades to come the contribution of chemotherapy to survival and well-being is significantly increased. However, we must realise that until we as prescribers, and the community as consumers, recognise our limitations and rationalise our resource utilisation, we may never achieve this goal.

References

1. The health report: chemotherapy [radio program transcript]. http://www.abc.net.au/rn/talks/8.30/helthrpt/stories/s1...3.htm [cited 2006 Jan 13]

2. Morgan G, Ward R, Barton M. The contribution of cytotoxic chemotherapy to 5-year survival in adult malignancies. Clin Oncol 2004;16:549-60.

3. Lindley CM, Vasa SP, Sawyer WT, Winer EP. Eliciting preferences for adjuvant therapy in patients with early stage breast cancer: tradeoffs between treatment, cure, and survival. Proceedings of the 31st annual meeting of ASCO; 1995. Abstr 149.

4. Barton MB, Gebski V, Manderson C, Langlands AO. Radiation therapy: are we getting value for money? Clin Oncol (R Coll Radiol) 1995;7:287-92.

C

by Damien Wed Nov 28, 2007 09:11

"I think you have done possibly a quick panicky look in the wrong place."

Well I think not. ScienceDirect.com carries the Lancet Oncology, and it shows volume 1 issue 1 as being September 2000. Take a look for yourself [1]

"I was referring to the Australian journal of Oncology"

There is no such publication. Why don't you proove me wrong with a link to the Australian journal of Oncologys website? [2][3]

If these papers actually exist why can't you provide a valid citation to it?

[1] http://www.sciencedirect.com/science?_ob=PublicationURL...9b698
[2] http://www.google.ie/search?hl=en&q=%22Australian+Journ...gy%22
[3] http://www.google.ie/search?hl=en&q=%22Australian+Journ...meta=

by Richard Harte Wed Nov 28, 2007 15:23

I have been following this dicussion for several days now, and i was wondering if the article on chemotherapy statistics being called for is this one (Link below). Hope its of some help to someone !

by Alison Kelly Wed Nov 28, 2007 18:47

Yes, the above source is for the same piece of research I was referring to earlier - many thanks for clarifying the source Richard. I did make a small mistake in my earlier referencing - the mistake was in using the word 'Australian' - I momentarily confused the location of the authors, with the location of the Journal, so apologies for that. However, I feel the issue has been clarified by the above reference., so thanks for that.

As I have said earlier, I will not be drawn into any further squabbling on this issue, because i just feel its a waste of my time, which is precious. Any one who is bothered enough can find out that that what I have said is true. The real issues at the heart of this controversy, such as medical misdiagnosis and malpractice, or the ones that are really important right now, to my mind. Anyone out there have any meaningful insights on the subject of misdiagnosis, malpractice, cancer treatments etc?

by Alison Kelly Fri Nov 30, 2007 15:21

For those who may not be aware of the fact, the local Newspaper in my neck of the woods, the Drogheda Independent has published an article this week, by Angela Mc Cormick, about my case, and experiences. Many thanks to the all the people who have telephoned and emailed, expressing their support in relation to my case. Also, I would like to thank, apart from my own family and wide circle of friends, the total strangers who have approached me on the street over the last few days, for their positive comments and encouragement.

As a result of some conversations with such people, it is clear to me that many people may not be fully aware of my position regarding some of the issues involved, so I will clarify some points for anyone who may be interested in the case.

I do not feel that all consultants or medical staff working in Our Lady of Lourdes Hospital are inefficient or incompetent. I feel very grateful to the consultant who finally did diagnose me in 2005, who was a completely different consultant to the person who failed to diagnose me in 2003. I am aware that the consultant who diagnosed me in 2005, is highly competent, and I feel also that other staff at the Dochas centre provide a high level of expertise and care to patients. I particularly feel that the Breast Care nurses at the Dochas Centre, provide a very high quality,and very compassionate service to women who attend the unit. I also have no dispute with Doctors and nursing staff who cared for me in the hospital when I was very ill after my unfortunate experience with chemotherapy, who again, were caring, and compassionate towards me.

The main issue I have with the hospital right now, is that, failure to be open and accountable about mistakes made in the past, does not engender confidence in the system. If reputable doctors continue to 'cover' for doctors who make mistakes, as it seems they always do, it makes it impossible for patients to trust the system.

If it was legally mandatory for doctors to report medical mistakes, it would be much easier for consultants to report.

To those people in the community who are agitating to keep oncology and breast care services in the hospital/in the town, I have to say, I understand your point of view. I myself would have shared that point of view in the past. It not a pleasant thought to have to travel to Dublin for treatment. However, in light of the experiences I have had, I feel that if services are to remain in Drogheda, they should be of the highest standard. If that is not possible, then I have to question if it worth holding onto them. An essential aspect of high standards in relation to the health service, has to be the ability of a service to be accountable and answerable to the public.

I am aware that some people may not be happy with the fact that I have spoken out publicly about my experience, and that there may be some people who may not believe that what I am saying is true. I suppose it may be useful to say that I felt I had to speak out, and that I do have evidence to back up everything I have said. I have had my medical files for over a year, and have thought very deeply about the consequences of speaking publicly about my experience.

I am also conscious that in the past, women who spoke out about the Dr Michael Neary case were also not believed by many people, and had to agitate for years to have their case heard, and acknowledged. How sad that Our Lady of Lourdes does not appear to have learned any lessons from that experience.

I continue to urge any woman who feels concerned about a problem with her health /abnormality with her breasts, and who has been reassured but still does not feel happy, to seek a second opinion from a different consultant. I also urge any person who has had similar issues to myself with the hospital in question, to make a complaint, or speak out about it, even if anonymously.

On a slightly different note, anyone following the recent debate on the Indymedia site, will be aware of some accusations directed towards me by a person who maintained that I was 'making up statistics' to suit my arguments.

I would like to thank Louise Lubetkin, an associate of Dr Ralph Moss, for emailing to me the full version of a research paper cited by me in that discussion. The paper was written in 2004 by 3 australian oncologists, and it highlights, the very small benefit conferred by chemotherapy on overall survival from cancer. The paper gives a very detailed account of the figures for most major cancers. The title of the paper is:

The contribution of cytotoxic chemotherapy to 5-year survival in adult malignancies. by Morgan/Ward/Barton. An accurate citation and abstract for this paper can be found at :

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=PubMed&Cmd=...inalp

If anyone would like a copy of the full version of the paper, they are welcome to email me at alisonkkelly@gmail.com, and I will happily pass it on.

Regarding diagnostic techniques, and their shortcomings, I would also like to highlight once again, for anyone who is concerned about these issues, that Ultra sound scans, and Mammograms have serious shortcomings. They are not 100% accurate, and do not always read the presence of tumours, particularly in women under the age of 50, due to the fact that breast tissue is more dense in women in this age group. If diagnosis was completely dependent on information given by scans, there would be no point in including physical examination as part of the diagnostic process. Scans and mammograms are generally used to give more information about the location, size etc of a lump in the breast, but the judgment of the consultant who is carrying out the physical examination is a major factor in deciding if further tests are necessary.

In 2005, when I was actually diagnosed, a mammogram was taken of my breast, as part of the diagnostic procedure. The mammogram showed my breast tissue as being 'normal'. A few weeks later, the results of surgery showed that in fact, a 5 cm diameter tumour was present in my breast, which an initial mammogram failed to detect. If my diagnosis at the time had been dependent on the mammogram alone, I would have been told again, that there was nothing wrong with me.

There is great deal of information on the internet regarding these tests. Consultants frequently tell people with cancer not to read articles on the internet, because 'it will confuse them' or that all these articles are written by 'quacks'. This is just nonsense. Many reputable sources publish online. I say, Knowledge is power - inform yourself. An article women may find interesting, which reviews the pros and cons of the various tests can be found at:

http://www.enquirer.com/editions/2002/10/28/tem_mammogr....html

I believe that women have a false sense of security regarding mammograms and ultra sound scans, as I did myself. We automatically believe that if we are told 'the scan/mammogram was clear' that we are fine. In most cases, this may be true, but in some cases it will not be true. Once again, I urge any woman who has concerns, to go for a second opinion.

Anyone who feels they have anything of value to contribute, is welcome to leave a comment on this site.

My blog is at: http://alisonkellysblog.blogspot.com/

by Damien Sat Dec 01, 2007 14:37

Alison,

You say that you only received the paper you referred to a few days ago. Does this mean that you had not even read the paper before citing it as the basis for your figures?

Hardly gives credence to your claim to "have cross checked them".

Most bizarrly of all tho, the paper you are now citing is the one that you referred to as "misleading". You seem to think that this single paper makes your wild claim fact. This is untrue.

by Mr L Sun Dec 02, 2007 15:41

Having followed the debate on this page with some interest over the last week or two, I wish to express my disgust at the immature and very unpleasant behavior of the person who calls himself 'Damien'.

As a medical professional myself, (not in oncology,) I am aware that as medical professionals we have the capacity to become rigid, or blinkered. Miss Kelly's arguments are logical, measured, and challenging. Just because one does not agree with her perspective, does not mean one has the right to personally insult her or question her integrity. The statistics she has quoted are accurate, and the research is real. Within in the profession, everyone knows that chemotherapy has a low success rate - Ms Kelly is therefore simply publicly stating what is already obvious.

Damien, whoever you are (from the quality of your comments, I suspect a medical student - an experienced medical professional would hardly be so illogical or childish), please be aware, whenever you persist in attempting to attack Miss Kelly, you are repeatedly drawing attention to the research, and its findings. If you don't want the public to be aware of the existence of such research, then you would be better off to find something intelligent to say on another subject, or better still, do us all a big favour and shut your virtual mouth.

No wonder Miss Kelly has moved her blogging to another site. This kind of ignorant boorish nonsense, only serves to bolster the point of view that the medical profession is arrogant, and considers itself above question.

by Damien Sun Dec 02, 2007 22:42

I've no problem with the public being aware of this research.

What I do have a problem with is people giving misleading information to give credence to the research- such as suggesting that Ralph Moss is a medical doctor.

Surely if we are to have an open debate people need to understand that he is a journalist rather than "a consultant" as he likes to call himself?

by survivor Tue Aug 25, 2009 02:13

I think you need to have experieced cancer and cancer care in ireland to understand Alisons point of view. Personally I've been there and done that And there are few in the 'industry' of cancer that I would really trust with my life now. Many patients are nothing more than a number and if you have a brain in your head....God help you. I am only sorry I hadn't studied more on the subject before I was diagnosed! When your very life is at stake...you become an expert and realise that there is lots you can do...and you'll do it. No doctor working in Oncology will tell you about the relation between diet and breast cancer (or others) for example yet the evidence is overwhelming. Maybe you have to receive a cancer diagnosis and experience the 'system' before you really know what your talking about. I wouldn't even entertain the ignorance and stupidity of some of the comments myself.