My education about cancer came early in life. I grew up in a rural dispensary practice, a large Victorian house, with no central heating, on 5 acres with out-houses where workmen used to live to tend to the horses in the days before cars. I arrived at Belper in 1963 at age 5 years and a few weeks later my brother Shane was born. The house was in three sections, the back section which had its own avenue, the middle section and the front section which also had its own avenue. Belper had a gatehouse which was called the dispensary which was a two roomed house which was only used on a Monday and Thursday morning for routine dispensary patients. In those days, there were limits to transport, many people had no access to cars.
Ireland in the 1960’s, 1970’s was becoming more prosperous so one moved from having a practice that consisted of patients in receipt of medical cards to an an ever increasing number of private patients hence the medical practice was carried out in the main house. The only suitable room for a surgery was the room in the middle section of the house where the stairs was and the hall was large enough for a waiting room. Our playroom with the TV was upstairs so this meant we intermingled on a full time basis with patients and their families either meeting them in the car park area or in the hall. In those days surgeries could go on until midnight and it did not end there, night calls for horrendous car accidents marked each week. Both parents being doctors meant that practice continued 7 days a week. Children soak up so much of their environment, my Dad used to call me rabbit ears because I constantly picked up on what I was probably not supposed to listen to and I was constantly looking for answers. My Dad was a well read man so the post would deliver the British Medical Journal; Time magazine, the Irish Medical Times and these always caught my interest. I never really managed to read ordinary children books. I got bored. I was never a diligent student, too much worry, fear replaced that spirit of altruism that is needed for the profession; anyway I never got the school grades.
I recall so many patients who had cancer; the discussions at meal time would often be stark. Someone would have arrived at surgery and an immediate call would be made to the relevant Consultant’s office in Dublin to get an urgent appointment as soon as possible. You knew the warning signs and I really did hate to hear the words ‘they opened and closed’ the no hope story. For weeks my father or mother would call each day to see the patient diminish in health and to support the family knowing their loss. Now it is me and I am asking if I did not have the breast screening last year, would I be idling around thinking I was tired but not realising I had cancer in my left breast. I have to say I did say to my mother that I would just let it go its own way and she looked at me in horror and said untreated cancer is an awful way to end life – she had seen so much of it in her own life, her mother lived only a few weeks having been diagnosed with leukaemia at the Royal City of Dublin hospital, Upper Baggot Street. I know her Uncle Donny died from cancer; as did her Uncle Bobby. Aunt Molly lived on Waterloo Road and my Mum recalled vividly her battle with throat cancer and the impact it had on her. Cancer and imminent death is something we are told can be avoided but do we really know if this is true?
A conundrum or so it seems and my personal experience of why silos http://www.investopedia.com/terms/s/silo-mentality.asp develop in the HSE (Health Service Executive) system in Ireland. I have been called for the BreastCheck free service at St Vincent’s University hospital every 2 years (age range 50-69). Every two years BreastCheck Merrion Road, Dublin 4, administratively proactive, send out a letter informing me that I have an appointment. As this is part of a no charge screening process, I decided with the encouragement of my partner KT, that I would attend. I am not so courageous when it comes to the CervicalCheck and by co-incidence (having confirmed this with KT today) I have never received a letter from them to attend an appointment. I have been remiss and only recently decided to check up why I had not been informed by the National Screening Service about the CervicalCheck option. They confirmed my details and were aware I had never had a smear test under their CervicalCheck provision. They gave me a code number and now I await the results of the smear test, the result will be posted to me. In relation to colorectal cancer, when I reach 60 years old, I am told that the postal service within one week will deliver a test kit. It is hard to imagine that I would be registered for BreastCheck and registered for CervicalCheck yet never called for this, but called for BreastCheck. http://www.screeningservice.ie/
The National Screening Service (NSS) encompasses:
- BreastCheck – The National Breast Screening Programme,
- CervicalCheck – The National Cervical Screening Programme,
- BowelScreen – The National Bowel Screening Programme and Diabetic RetinaScreen – The National Diabetic Retinal Screening Programme.
Cancer screening is under attack in Ireland because of the lacunae of human nature and the failure of the professionals in charge of the National Screening Service to pass on earlier results of cervical checks to service users which if known earlier, may have altered the progression of the cancer. The fear is that the National Screening Service is now under threat of at least 200 medical negligence claims where errors occurred. The problem for screening for cancer is that if too many people take successful medical negligence claims and massive awards are granted, this could cancel its very existence.
It is time to get perspective and where best to start but by going to that stage beyond and based on my childhood experience of looking at medical magazines from both the UK and America. I will start by checking out what happens in America at one of its leading hospitals and my choice is Memorial Sloan Kettering hospital to see just how important it is for screening to take place. http://www.mskcc.org/cancer-care/risk-assessment-screening. Medical professionals encourage patients not to refer to Dr Google but sometimes there are patients who want to know as much as they can comprehend. It may not change the outcome but it satisfies their curiosity and stops them excessively fretting or worrying. Secondly I will review the Christie hospital (Manchester) ranked as one of the most advanced and technological cancer hospitals in the UK and in the world. http://www.christie.nhs.uk/professionals/research/research-themes/cancer-prevention-and-early-detection-research/screening/
The above two links provide in depth information about screening which can be compared with the website of the National Screening Service. My opinion based on my experience is that in my case the mammogram located cancer and without the check I would have have neglected any signs or non symptoms therefore I advocate that people engage with what is provided for free by the National Screening Service or if they have private health care that they avail of screening that is covered by their payments to the private health care providers.
June 12th 2018 is World Empathy Day and it is my next appointment at St. Vincent’s Private hospital for Herceptin infusion. I have to say there is no place more humbling than walking up three flights of stairs, turning right to doors that automatically open and let you in and soon you know you are in Day Care Oncology. As a young person I recall a long walk and conversation with my cousin Jerry Kelly, who was a missionary priest in South Korea. We walked for miles and I recall him saying you will find life hard; you have too much empathy. I did not understand then what Jerry was really saying but as life moves on through the decades and you find yourself less sensitive to each event, based on the fact that you don’t remember what previously would have made you so sad, you understand what empathy means. Empathy is powerful but it is essential to understand what it really means and how to establish boundaries that protect you from people who will take advantage for their own gain.
Empathy Day and where best to be but in the company of capable medical staff, nurses and ancillary staff, people who really do care about people. There is youth and enthusiasm which leads towards hope and in an Oncology environment, this is essential. Rachel was my nurse for the day. Kindness is so powerful and being in a chair beside the Nurses’ Station I could observe the chemistry of a team working with conviction, professionalism, empathy and regard for all who were been treated for cancer in the Oncology unit today and every day. Rachel went through the checklist, she took my bloods and when the results were returned she started the Herceptin infusion. Professor Crown said “we” were making progress. I had the opportunity to ask about the importance of screening and he said that screening did not apply to all cancers but it did to BreastCancer CervicalCheck and Bowel which is what is provided by the National Screening Service in Ireland and The Christie hospital in Manchester. KT prompted me to ask how many more sessions with Herceptin and Rachel told me that it was Professor Crown’s decision but that it usually was for 12 months after the last session of chemotherapy. I then asked if I would be recalled to BreastCheck and Rachel said no that when the Herceptin treatment stops then Professor Crown would order a CT scan.
Another world, another life. I had not seen Elinor on this visit. I was walking down the stairs and strangely thinking about her when there she was, looking well, and near the end of her treatment. It was lovely to see her smile. She has three small children and it is so very important that her treatment is effective. She was returning from her CT scan. As a child she was all that empathy is about. She had a particular love for her pony Patch. Elinor and her Mum visited me in Zimbabwe in the 1990’s when she was just starting into her teenage years.
KT phoned me many times and had told me to make sure to get a taxi but that was not to be today so I got the bus and it was just as well I did otherwise I would not have met my dear gentleman doctor, Martin Callinan, dapper dressed as ever and visiting his wife in hospital. We chatted and he spoke about his early days studying medicine in the 1950’s and working in the cancer hospital in Hume Street and how times have changed for patients with cancer, in his life time. Martin is everything to me that a general practitioner should be, a man with empathy yet firm, an ability to diagnose and refer promptly. It was Martin and his wife Geraldine who noticed a significant change in my health in 2009; and although retired from medicine, told KT to immediately take me to A&E in Tallaght; as it turned out I was extremely ill, I was lithium poisoned. http://www.cancertherapyadvisor.com/lithium-overdose/article/586736/
Martin possibly was in college at the same time as my Mum but I don’t think they knew each other. I had always hoped my mum would leave Co. Meath and return to Dublin 4 where she lived until her twenties; she went to the Sacred Heart school in Leeson Street; and then to College of Surgeons; she lived in Dublin at spent her holidays in Co. Clare. Now this can never be. All I know is thoughts come hither and thither through my mind these days and I am sad for the years that could have been but were lost. It is a great comfort to know over the last few years I met with Mum weekly and that I had met her, by chance, because KT spoke to her and asked her to meet me on Christmas week, so I saw her the Monday before the massive stroke ended her life, years before she expected to leave this earth.
As time passes, I realise that being a doctor, she was hiding her concern about me and the breast cancer especially as her own Mum died from leukaemia. Each week she would bring little gifts, reminiscent of my childhood, and now I have them including the rug, teddies, and a rose from a dress she bought me when I was 6 years of age, they are now around my bed. I have no access to her home since Mum passed away; nor for 12 years before that, so I have no inclusion in that part of her life which would allow me to grieve. Acrimony and bitterness prevail yet again in my life; it is the legal profession who gain. I know the stages of grief but I haven’t reached anger or repressed anger ie what some people call depression. I can say there is a sense of freedom from worry and concern about what would happen to my Mum if she became ill or incapacitated. The house, my Mum’s home, was broken into recently, but thankfully due to vigilant neighbours and the fact that my Mum was not there, she was fortunate with little stolen. However, it made me worry that there would be another attempt to break in and that my elderly Mum would be harmed. It must have also caused her some concern. My Mum never had a break-in before in her life time. My Mum’s choice to remain in her home, a large house, with an electronic gate in a rural location was a constant source of worry for me. I could not have lived there.
Vivienne Starr, the Optician phoned KT to say the test for Glaucoma was a normal reading; such a relief. Then it was time to get the results of my bloods from Dr Cahill, again KT phoned him to renew my three monthly prescription and get a form for my bloods. The previous set of bloods were normal but cholesterol still remains high and I need to focus on diet or worse again go on statins medication; I want to avoid taking any further medications so I will have to focus on my diet and avoid ice cream and other delights which raise cholesterol. All I am awaiting now are the results from CervicalCheck.
Eilish O’Regan, Health Correspondent, Independent newspaper, reports that there could be delays of up to 12 weeks due to the surge in demand for screening in the wake of the CervicalCheck scandal.
The Government was forced to offer free retests after many women became concerned about the accuracy of their result. It followed revelations about mistakes involving 209 women who developed cervical cancer….
The Well Woman centre has all its tests (now doubled circa 300 per week) carried out at the Coombe Hopsital which is contracted by CervicalCheck to do the work.
Dr Gabriel Scally, who is conducting the scoping inquiry into the CervicalCheck scandal, has recommended clearer information for women on the limitations of testing. This will emphasise the failure rate involved in screening, which can lead to unavoidable failures.
The 209 women at the centre of the scandal were given the wrong tests results as a result of an error rather than a test failure.
In future women will be asked to sign a consent form which will state clearly that there will be full disclosure in the event of any error or missed diagnosis for any reason.
As I have written before that as I passed Meagher’s Chemist on Upper Baggot Street I saw the sign for the Well Woman Centre, I called in and spoke to the receptionist and as the doctor had the time, she carried out the CervicalCheck that day. I have never used the CervicalCheck service before because they never notified me by post and sadly there are others who fall into this category too.
Enough nostalgia and back to what is reported in the media over the last few weeks that may be of significance. The stage is set for a scoping inquiry led by Dr Gabriel Scally. A very brave and altruistic Vicky Phelan had the capacity and motivation to sue the HSE and Clinical Pathology Laboratories Inc. after receiving incorrect test results. Vicky is now on Pembroizumab http://www.keytruda.com/ since April (her third dose) and her Consultant Mr David Fennelly has confirmed that there is a shrinkage of her tumours. Mr Fennelly said to her “You don’t realise how big this is for cancer and cancer patients”.
Every year approximately 300 women are diagnosed with cervical cancer and 90 die from the disease. Other people screened are treated for pre-cancerous changes. It is important to note that since CervicalCheck began it has detected over 50,000 pre-cancerous changes in women without any symptoms, as well as over 1,200 cancers. Eilish O’Regan, Independent article 14th June 2018.
Juliana Adelman dated 14th June 2018 Irish Times article under the heading ‘Cervical Cancer screening is far from perfect’ outlines the history of the Pap smear which is used by Cervical Check. To quote as follows:
The problem of false negatives is not new, but is part and parcel of the complexity and ambiguity of the test.
According to Monica Casper and Adele Clarke, the Pap smear “has become the most widely used and entrenches cancer-screening technology in the world”.
History: The Pap smear is named after Dr George Papanicolaou, a Greek doctor working at Cornell University Medical centre in the early 20th century. His research involved the reproductive cycle of guinea pigs in 1917 by removing a few cells from the cervix and examining them under the microscope. He then took a swab of his wife, certain staff and patients. It was 1940 when the medical community accepted Dr Papanicolaou’s test as an effective way of detecting very early cancer or pre-cancer. To take the swab is the simple part. To read the results takes time and expense and must be done by a Cytologist.
The classifications for observed cell changes are difficult to define clearly and have changed over time. Despite the cost and complexity, women in the US began to demand the smear be used as a screening tool because of its potential to save lives through early detection.
The marketing strategy for screening placed responsibility on women to be alert to signs and to act accordingly. This would mean that medical science had the opportunity to cure them. It was frowned upon if a woman was diagnosed at Stage IV when she had the opportunity of having cervical smear tests on a regular basis. Women must acknowledge and be aware of the fact that screening is imperfect.
18th June 2018: a week without any treatment or appointments. The mood is low recently and it is hard to be motivated even with my rigid daily routine. Thankfully today provides a reason. Cancer medications can interfere with neurogenesis in the hippocampus http://en.wikipedia.org/wiki/Hippocampus deep within the brain and this talk with some 5.6 million hits is a must for anyone who may feel low, or who are experiencing what they call “chemo brain.” It is an excellent Ted talk by Sandrine Thuret: ‘You can grow new brain cells. Here’s how – Ted talk 8th October 2015. http://www.ted.com/talks/sandrine_thuret_you_can_grow_new_br…
At all times there is a need for different perspectives and I have to say a recent article by the Irish Examiner columnist, Victoria White, is worth reading. http://www.irishexaminer.com/…/victoria-white/cervicalcheck-is-a-political-football-bei… You are given the opportunity to explore the one sided narratives that have consumed our media of recent times. I will quote as follows:
The Government is frightened because Vicky Phelan won an award of £2.5 million against Clinical Pathology Laboratories, where her cervical smear test was misread.
Four cases relating to incorrect smear results have already been listed to come before the High Court, with many more potentially waiting in the wings. Emma Mhic Mathuna is seeking “exemplary and aggravated damages”… What the Government really fears is the voice of a dying woman blaming them for their plight.
Why did the Government not repeat that cervical smear testing programmes have an incorrect reading rate of about 30%; and that it was an issue about open disclosure.
…this is what we need to understand as arising from this crisis.
The women most failed by the State in the diagnosis of cervical cancer are the hundreds who contracted it in the 20 years it took to establish a screening programme after the UK and similar jurisdictions had established one.
Orange hands http://medicinetoday.com.au/dermatology-quiz/woman-orange-coloured-palms. I noticed them but just thought it was that it was due to peeling oranges which I eat on a daily basis. No matter how often I washed my hands, the orange colour remained. Then someone said to me about the orange colour of my hands and again I explained it was peeling oranges and never thought anything more about them. Then when KT asked me about my orange hands and asked why I had not checked it out, I thought it was time for Dr Google and yes this is on my list when I attend Oncology next Tuesday 3rd July. Orange hands, the graphic on the computer replicates exactly what I had (not at present but several weeks ago). It is a medical condition and it needs to be assessed by the professionals. As I have only 70% kidney function (a result of Lithium poisoning) and orange hands can be related to renal problems; I will write a note in my diary and ask Professor Crown when I meet him on Tuesday.
My hair is beginning to grow again; it is very fine and I still need to wear my hat. There is always hope and for this reason I am going to refer to an article written by Professor Crown (unfortunately there is no link from the Irish Daily Mail so I will highlight some of the relevant points) and maybe in time the link will be made available.
“Ireland’s best-known oncologist delivers an impassioned plea for a new approach” by Professor John Crown. The heading states “A new drug has had a huge effect on Vicky Phelan’s cancer. So shouldn’t all patients like her receive it too?
I would say yes, because we know that in Vicky Phelan’s case, since the administration of Pembrolizumab http://www.keytruda.com/ since April, the tumours are shrinking. This is a new immunotherapy drug which was made available to Vicky Phelan via the public health service. Professor Crown advocates that this now be made available to all women with cervix cancer who might benefit from it. At present they cannot access it.
Pembrolizumab is from a new class of drugs that have revolutionised the therapy of several cancers. There are now about half a dozen similar drugs in advanced stages of development or, in some cases, already in use. They are superior to older treatments for melanoma, lung, kidney, bladder and some other cancers.
Process relating to the introduction of new drugs. The first hurdle is the need to get regulatory approval, which is a determination by an expert government agency that the drug actually works and is safe. In the US this is done by the FDA http://www.fda.gov/. They have granted such an approval for Pembrolizumab for some patients with advanced cervix cancer which deteriorated despite anti-cancer treatment. In Ireland and other European countries, this type of regulatory approval is no longer done at national level but by a pan European entity called the European Medicines Agency http://www.ema.europa.eu/
If the new drug has high efficacy and safety, it is probable that it will be approved. The second hurdle concerns cost. The question is who pays? In this case the decision for reimbursement is nationally determined therefore it is the National Centre for Pharmaeconomics (NCPE) http://www.ncpe.ie/ who determines. The drug company determines the price for the drug. As Professor Crown writes:-
While the NCPE takes much criticism for ‘denying’ drugs for cancer, cystic fibrosis and other illnesses, it must be acknowledged that this process is not easy. Every euro that is spent on a new cancer drug is a euro that is not available for others desperately needed activities in the health service….In Ireland not unlike the UK Ireland would now be considered as a ‘low access’ country.
Professor Crown quite rightly suggests that putting a tax on cigarettes and tobacco and even tanning parlours. Such a tax could be used to pay for these expensive drugs. I would add that cigarettes are possibly over taxed in this country causing smuggling or people returning from holidays stocking up on cigarette supplies which are so much cheaper than the £12 for 20 in Ireland. There needs to be an allocation of funding from taxing items which are known to cause cancer but loopholes need to be avoided also. Professor Crown refers to this as a ‘Hypothecated tax’ http://dictionary.cambridge.org/dictionary/english/hypothecated-taxes
Where is the equality? If these drugs are made available to Vicky Phelan, why not other women with a similar diagnosis but without private health cover? To further quote Professor Crown:-
It might offend civil servants and other purists of taxation theory but this revolutionary step would make the drugs available to the thousands of patients who need them today, without diverting health care resources from other areas that desperately need them.
Another month is ending and next week will be the start of a new Chapter. Living as I do in what I call Upper Baggot Street Village, I feel included and privileged. 28th June 2018 and it was time to meet my good friend Joe again for a chat at Insomnia coffee shop. I must have been early because I had the opportunity to read the Irish Independent newspaper and therein was the supplement from Media Planet – Irish Cancer Trials httpL//www.cancertrials.ie/2018/06/innovation-within-oncology/ If you scroll down there is a PDF link to access the supplement. As it was late afternoon I decided to take the supplement and will replace it with a book for their bookshelves, from my collection of books. The wise words of an old Judge come to mind and I repeat them here ‘Knowledge is no load’.
To highlight certain relevant points concerning breast cancer:
Oliver O’Connor, Chief Executive, Irish Pharmaceutical Healthcare Association http://www.ipha.ie/
the fact is, the prices are agreed as an average of 14 EU countries and, of those countries, Ireland is last among Western European countries for the adoption of new medicines….Ireland comes 18th out of 28.
Bryan Hennessy, Clinical Lead, Cancer Trials Ireland http://www.cancertrials.ie/
- Cancer trials can be the ultimate win-win, with patients getting the best care possible, plus potentially getting access to a new breakthrough medicine…Unfortunately Ireland is lagging behind a lot of Europe. We only get around 3% of people in Ireland with cancer on new drug trials. You need to get the funding in place to get new medicines trialed in the clinical environment.
- You need phase I, II and III trials involving patients to be able to show that a new medicine is safe and effective outside the laboratory.
- Patients get a lot of from cancer trials because, ultimately, they re going to get far more attentive care. There is always a control group in any trial, who don’t get the new treatment, but rather a placebo.
- Cancer is a global phenomenon so no one country is ever going to defeat it on its on.
Professor Seamus O’Reilly Consultant Medical Oncologist, Cork University Hospital.
- Since 2008, a mass centralisation of cancer care in Ireland has seen the treatment of breast and ovarian cancer change for the better.
- Professor O’Reilly says “We’re better resources, and we’re seeing quicker diagnoses, referrals and clearer treatment pathways for patients.
- Breast cancer is the most common form of the disease in women, accounting for 17% of all cancer deaths in Ireland. However the survival rate continues to improve with the figure now around 80%.
- Precision therapy is helping to enhance and improve existing treatments.
- In breast cancer, an increased presence of the ‘HER2’ gene causes cancer tissues to multiply faster, occurring in roughly 25% of breast cancer cases. ‘HER2’ testing establishes whether someone is ‘HER2positive’, meaning they have the specific gene abnormality that can play a role in the development of breast cancer. Treatment then targets this genetic abnormality directly.
- In someone with HER2 positive breast cancer, their cancer is likely to come back more quickly that in others. We can now target that abnormality and we’re seeing better results from that.
The supplement refers to other cancers and articles which can be accessed on the above link.
Another month over – I have read through this with no recollection of writing it but then this is the process of living in Groundhog Day and its routine. It has advantages when cancer is your companion because you constantly forget about cancer and just live in the day.