Breast Cancer Misdiagnosis in Ireland

louth | miscellaneous | opinion/analysis Saturday November 24, 2007 18:51 by Alison Kelly alisonkkelly at gmail dot com

Breaking the Silence

A personal story of Breast Cancer Misdiagnosis and Medical Malpractice

I have been misdiagnosed in relation to Breast Cancer in Our Lady of Lourdes Hospital Drogheda, Co Louth. My experiences in relation to breast cancer and Our Lady of Lourdes Hospital have been very involved, and harrowing in the extreme.The basic story is as follows;

I initially attended the breast clinic at Our Lady of Lourdes Hospital, on 28th March 2003. I was examined by a consultant there. At the time I had a distinct lump in my left breast, which my GP had also been able to detect. The consultant assured me that the lump was fibrocystic, and definitely benign. He went so far as to say, 'Do not lose a nights sleep over it, its nothing'. I did not feel happy, and asked him how he could be so sure. I requested further testing. He agreed to refer me for an ultra sound scan, which I had, the following May. I was told that the scan showed my breast tissue as being
perfectly normal. The consultant sent a letter to my GP (a copy of which I have in my possession,) stating that I had a small lump in my left breast, but that he felt the lump was benign.

I was not recalled to the breast clinic, and no suggestion was made
that I attend again in the future. But I requested a further
appointment myself some months later because I felt uneasy about the diagnosis I had been given.. However, I did not manage to attend that appointment, due to the fact that I had the flu and felt too ill to get out of bed on the day. I also felt that maybe I had
been over anxious in requesting another appointment and that I should accept what I had been told at my previous appointment. I remembered that I had been told by the doctor not to lose a nights sleep over the lump, and decided to trust what he had said to me.

In January 2005, I again attended the breast clinic for examination, having asked my doctor to refer me again. I was again very concerned about the same lump, which I felt
had grown bigger, and there were other changes apparent in my breast.
I was examined by a different doctor, who also performed a mammogram, fine
needle aspiration, and biopsy. It was confirmed that cancer was
present, early in February 2005.

As a result of these tests, I had a Mastectomy, and it was confirmed
that I had a carcinoma in my left breast,, which was stage three,
invasive, and with high grade DCIS. There was metastatic disease also
to a lymph gland. In other words, advanced cancer which had spread locally. It
was recommended that I should have 6 months of chemotherapy, followed
by six weeks of radiotherapy, and five years of hormone therapy.

However, my first session of chemotherapy, which resulted in very severe
neutropenic reaction, left me so ill, that I decided not to receive
any more chemotherapy. I almost died as result of this one session of chemotherapy, and had to be hospitalized and treated as a medical emergency. My immune system completely collapsed, and I was told that I had developed a very serious infection. I was told that I had developed a reaction called Neutropenic sepsis, which can be fatal. Two nurses on duty in the hospital at this time, who cared for me, told me that they had never seen a person to be so ill after one dose of chemotherapy. I also had a very serious allergic reaction to a steroid drug called Dexamethasone, which had been mixed in with the chemotherapy drugs. The reaction I had was defined by the staff at the hospital as a Psychotic reaction. The symptoms of this reaction, included mental confusion, memory loss, deep depression and suicidal feelings. It was a very difficult, terrifying, experience. When I asked why I had not been informed that these side effects could occur, I was told by an oncology nurse at the hospital that if they told patients about all the possible side effects of chemotherapy, that no one would ever take it. After this one session of chemotherapy, I was so ill that it took me over 5 months to recover my strength. I was unable to physically leave my own home for two months because I simply did not have the energy.

I felt so disillusioned with the treatment I received in Our Lady of Lourdes Hospital, that I completely walked away from medical treatment in September 2005. If stress is a major cause of cancer, as many people believe, my experiences with this hospital caused more stress to me than any other experience I have ever had in my life. I felt completely unsafe accepting treatment from this hospital.

Because I had not been correctly informed of the dangers of the chemotherapy drugs which had been given to me, I decided to find out for myself , the truth about the side effects of Radiotherapy, and Hormone Therapy (in my own case, the drug proposed was Tamoxifen), and the actual effectiveness of all the treatments I had been offered.. I did not like what I found.

I discovered that Radiotherapy improved the overall survival rate for breast cancer by only 2 %, and while it does prevent recurrences, it can cause heart disease –women who have radiotherapy for breast cancer have much higher rates of heart disease, and death from heart attack, than women who do not have radiotherapy. I also discovered that Radiotherapy for breast cancer can cause Osteoporosis, and paralysis of the arm on the side of the body the radiotherapy is administered.

I found that the hormone drug Tamoxifen has as its side effects the potential to cause Cancer of the Uterus, Depression, Eye Cataracts, and blood clots, leading to the possibility of a stroke.

I discovered that chemotherapy has been scientifically proven to improve overall survival from cancer by just over 2% - this result was arrived at by two Australian oncologists who conducted a meta-analysis of over 30 different research trials.(Ref : The Journal of Oncology (Australia) 2004.) The exceptions to this figure,are testicular cancer, and cancers of the lymphatic system, which have a higher success rate. The survival rate for breast cancer is reckoned to be improved by approximately 1.4 %. I made the decision that if chemotherapy only increased my chances of survival by 1.4%, and also had the capacity to kill me via neutropenic sepsis, that I would take my chances without it, and the other treatments being offered.

Since I made the decision to walk away from medical treatment, I have pursued natural/holistic approaches to healing, and have decided to take full responsibility for my own healthcare. I have not attended any alternative practitioners, but have used many self help methods, including eating a healthy organic vegan diet, avoiding dairy products, meat, and alcohol, taking exercise, and using supplements and herbal medicine. I practice Tai Chi and Yoga, and Meditate regularly. I use self hypnosis/creative visualization techniques to promote healing.I have read very widely on the subject of cancer treatments, and continue to keep myself informed on an ongoing basis. I feel very well at the moment.

I realize I do not know what the future holds, but then, neither does anyone else. Women who take all the treatments on offer, often have recurrences of breast cancer, and 43% of them will die of cancer, despite having endured the misery of those treatments. I am optimistic, and hopeful that I will continue on the pathway to restored health. One thing I can be sure of, is that I myself, will not be doing anything to hurt or harm, or kill myself. I feel safer and far more relaxed and secure looking after my health myself, than entrusting it to a consultant.

I have been watching with great interest the unfolding of the scandal regarding the misdiagnosis which has taken place in recent times, and I was waiting to see if Our Lady of Lourdes hospital would appear on the so called ‘safe’ list of 20 hospitals deemed fit to offer a good service to breast cancer patients. When it appeared on Friday 9th November on that list, I felt that I could no longer remain silent regarding my experience.

On that day when the ‘safe’ list was announced, I made a formal complaint in writing by email to the HSE regarding the misdiagnosis which I originally received. I have made it clear to the HSE that I am aware that it takes somewhere between 4-10 ( or some say 12 )years for a cancer to develop into a palpable lump in the breast. It is also abundantly clear from the grade and stage of the tumor that i had, that it must
have been already cancerous in 2003 when i was first examined.

I have also requested that the HSE investigate if I was given an inappropriate dosage of Chemotherapy, or was overdosed.

I have requested that an investigation be carried out of my case, and an
apology from the HSE for what I have had to endure as a result of the
misdiagnosis. I have also requested that a review be carried
out of other cases of misdiagnosis which have occurred at this hospital
in relation to breast cancer patients, and that the result of such a
review be made public. I have been told of other local cases of
misdiagnosis, and I feel that Our Lady of Lourdes Hospital is not
being open in relation to this issue.

At the time of writing, I have had a response from the HSE, stating that my complaints are being investigated, and also a further letter which arrived last Monday 19th Nov. The letter sent by the HSE, informs me that I should have a response by 20th December, and also informing me that if the investigation should take longer, I will be informed of that, every 20 days. It strikes me that the 20th December, straight before Christmas, could well be a time, when the current furore over the Portlaoise Misdiagnoses etc, will not only have died down, but that also, most of the country will be so caught up in getting Christmas organized, that no one will really notice another case of Misdiagnosis acknowledged, or denied, whatever the outcome will be. This would be very convenient for the HSE, I am sure.

I feel very disappointed, but not surprised, that OLOL hospital has chosen to cover up the misdiagnosis which occurred in relation to me, and I feel it is terribly sad that the onus is now placed on current or ex patients to come forward and draw the attention of the public to these matters. I feel that the real hidden festering sickness at the heart of our health service is the unwillingness of the medical profession to admit its mistakes. It is very convenient for consultants in the area of cancer care, that those who have been misdiagnosed are often too ill, scared, traumatized or stressed by the experience to be able speak out. I think that it should be mandatory for all cases of misdiagnosis to be reported to an independent body, as they occur. I also feel it is a national disgrace that no reporting exists regarding iatrogenic illness and death – ie, death caused by medical malpractice or mistakes. It is possible for example to access figures for how many people die in the uk and the usa as a result of medical negligence, but not here. Why? Is it really appropriate that the medical profession in this country appear to be answerable to no one? Surely the citizens of the country deserve better than this. I feel it should be a criminal offence to fail to report a case of misdiagnosis or medical malpractice.

Why is the medical profession able to get away with prescribing potentially fatal treatments for patients, without informing those patients that they could die from the treatment? If any one else in our society gave someone a substance that could potentially kill them, without informing them, that person would be considered a criminal. Why is the medical profession deemed to be above the law?

I feel that a culture has existed in Ireland for a long time, where Irish people, particularly of the older generations, do not like to question authority, and the medical profession is one of the last bastions of authority in this country. The time has come for the Irish people to assert themselves, to stand up for their rights, and demand openness, and accountability in our health service. Consultants are being paid vast salaries to provide good quality health services and they are failing miserably, but we don’t even know exactly how badly they are failing, because it seems that they are accountable to no one. I urge the citizens of this country to stand up to consultants. They are not Gods – at the end of the day they are human beings, just like you. Do not be intimidated by them. If you are not satisfied with the service they are providing, complain, loudly. Demand better.

I think many Irish people suffer from ‘feeling grateful’ syndrome. They feel that if a doctor finally treats them for cancer, and ‘saves their life’ that they do not have the right to complain about past misdemeanors. This is a big problem. A major obstacle in the way of reporting misdiagnosis is the fact that people who are still alive after misdiagnosis, are usually, still under the care of a cancer consultant – possibly even the consultant who initially failed to diagnose them correctly. I think many people are afraid that if they make a complaint about past treatment, that their consultant will be angry with them, or may withdraw treatment from them. It is very important for people to realize that if any consultant treats them in such a manner, that this is a very dangerous form of bullying, and no one should tolerate it. If you are afraid of your consultant, change to another one, who treats you with respect and dignity.

Each year approximately 19000 irish people will be diagnosed with cancer, and almost half of those people will die of cancer. The system simply is not doing what it is supposed to do, and it seems that no one is checking up on these people.

I urge all people in this country, who have been misdiagnosed in relation to cancer –not just breast cancer, all cancers, - to stand up and be counted. Make your voice heard, tell your story. If you do not feel comfortable or able to speak out yourself, ask someone else to do it for you. Contact a journalist, or a local councilor, or your TD. If you wish to remain anonymous, ask that your name and details be kept confidential. I also urge the families and friends of people who have passed away after misdiagnosis or fatal treatments, to speak out on their behalf. Contact the HSE and make a formal complaint. The telephone number of the HSE Information line is : 1850 24 1850 The email address is; Infoline@maile.hse.ie

It is difficult to do, but it is very important that as many people as can, speak out, because it is quite clear that the medical profession will not. Unfortunately, nothing will change unless the true extent of the problem becomes clear. We owe it to future generations, and to the current generations of our sisters, mothers, daughters, brothers, sons, husbands, fathers, partners, to speak out now.

I would also like to encourage all women who have any concerns about abnormalities in their breasts, and feel worried that they may not have been correctly diagnosed, to assert themselves, and demand a second opinion from an experienced consultant with a good track record. Women may also be interested to know that mammograms, and ultra sound scans are far from foolproof, and often do not detect tumors accurately, particularly in women under the age of 50, because breast tissue is more dense and hard to read in this age group. So, aside from human error, the diagnostic techniques in themselves, are not guaranteed to show up a cancer. The only really fool proof method for detecting breast cancer is a biopsy. And while a biopsy is not a pleasant experience to have to undergo, at least you know for sure whether or not cancer is present, and can then make your choices for how you want to treat it.

I would also like to encourage any person who has been recently diagnosed with cancer, to find out for yourself, the full side effects of any treatments you are being offered, for yourself. Do not assume that your Doctor will tell you all of the long term and short term side effects, because he/she is unlikely to do so. The internet is a very valuable resource for checking out treatments. A reputable website that is particularly useful is one called ‘The Moss Reports’ which is compiled by an American medical doctor called Ralph Moss, who specializes in tracking research on cancer treatment methods. There are some very interesting articles on this website about the effectiveness of chemo drugs, hormone therapy , radiotherapy etc and also some enlightening pieces about the lack of effectiveness, and dangers associated with Mammograms. The website address is : www.cancerdecisions.com.

Finally, I call upon Mary Harney to initiate a public enquiry into the misdiagnosis of breast cancer, and to legislate for mandatory reporting of misdiagnosis and malpractice.

The full text of this story, and updates, is available at my blog at;

http://alisonkellysblog.blogspot.com/