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Thyroid Cancer: Doctor–Patient Partnership
Clinical Oncology 22 (2010) 512e513 Contents lists available at ScienceDirect
Clinical Oncology journal homepage: www.elsevier.com/locate/clon
Personal View
Thyroid Cancer: DoctorePatient Partnership K. Farnell Butterfly Thyroid Cancer Trust, UK Received 12 April 2010; accepted 20 April 2010
I write this in March 2010, almost 10 years after I was diagnosed with thyroid cancer. Looking back, so much has happened since then, much of which has been very positive, but my family and I were devastated by my diagnosis at the time. It was a very busy time in my life. I was working with my husband in his very busy dental practice, our son was 12 years old and would soon be preparing for important examinations at school, and my father was chronically ill. Any patient will confirm that waiting to have the final diagnosis of a thyroid nodule which could be cancer, albeit in a very small (about 5%) proportion of patients, is a very stressful time. My diagnosis from fine needle aspiration was inconclusive (THY3); this led to hemithyroidectomy, which confirmed a diagnosis of minimally invasive follicular carcinoma of the thyroid. Completion thyroidectomy followed 1 week later. A 2.5-cm tumour in an awkward position led to difficult surgery, and I sustained a laryngeal nerve injury which produced a left-sided vocal cord palsy; the resulting laryngeal spasms and stridor attacks are unpleasant. I also developed protracted hypocalcaemia, but was successfully weaned off calcium supplementation after 6 years! Then came radioiodine ablation with hypothyroidism (Thyrogen was not available at that time), and treatment in isolation leading to depression and anxiety. Although I was told repeatedly that this was a highly curable cancer (5-year survival 95e100%), it was very difficult to accept this as I had not had contact with anyone who had had this rare cancer, and 5 years seemed a long way off. I was very lucky to have the support of a wonderful family and excellent doctors. I plagued my surgeon and oncologist with endless questions about the disease and my prognosis, and they were exceptionally patient and did their utmost to support me. I was very anxious and depressed during the initial 6 months; the only way I could cope was to find out everything I could about my disease, and I learned fairly quickly that this information needed to be sourced from my professional medical team and not the Internet! Author for correspondence: K. Farnell. E-mail address: enquiries@butterfly.co.uk
I was lucky; I passed my first 6-month diagnostic scan and did not require any further radioiodine ablation treatment, although withdrawing from thyroxine and becoming hypothyroid again was a total pain. The disruption to both normal family and working life was difficult to accept. I was worried when I discovered an enlarged lymph node in my neck a few months later, but this was removed and was benign. A second scan was undertaken with Thyrogen; this was much easier and I was able to carry on with life as normal. I also had the opportunity to have an expert radiologist to carry out my ultrasound scans. Despite excellent support from my family and doctors, I still felt isolated and lonely at times. No one I knew had even heard of thyroid cancer, radioactive iodine, treatment in isolation or ‘diagnostic scans’; the treatment protocol and terminology of this disease are unique, which can make the cancer experience more difficult for patients. In my region, like most in the UK, we did not have access to an oncology nurse, and there was no patient support apart from family and during clinic visits. How did people who were on their own cope with this? I was troubled by this issue, and realised through my own experiences that if patients were well informed with reliable information from the start and given the opportunity to have contact with other patients, it would be beneficial to their well-being. I started to meet with hospital managers and my medical team to talk about improving the situation for patients with thyroid cancer; they could not have been more open or supportive. My surgeon telephoned me and asked if I would talk with a young newly diagnosed patient who was struggling. That was the beginning of the first patient support organisation in the UK, the Butterfly Thyroid Cancer Trust. This young woman was in her 20s and understandably devastated by her diagnosis. We talked together, I shared my experiences about the treatment and what was involved, visited her in hospital and went to scan appointments with her. As well as helping her, this also helped me. She was the first person I knew who was going through what I had gone through. That was 9 years ago and much has happened since then, all of which has been good!
0936-6555/$36.00 Ó 2010 The Royal College of Radiologists. Published by Elsevier Ltd. All rights reserved. doi:10.1016/j.clon.2010.04.001
K. Farnell / Clinical Oncology 22 (2010) 512e513
My doctors started to ‘refer’ newly diagnosed patients, and I gave up work at the dental practice to concentrate on setting up Butterfly on a full-time basis. It has taken a lot of hard work and determination to succeed, but the reward in seeing what good support can do for other patients is wonderful. Butterfly is the first registered charity in the UK dedicated to the support of people affected by thyroid cancer, and is recognised by and has the full support of the healthcare professionals treating patients in the region. The Butterfly website (www.butterfly.org.uk) details what the charity can offer, but to a newly diagnosed patient, the opportunity to meet someone who has had the same disease as them and who is well/cured so many years later is priceless. No one diagnosed with this rare cancer in the UK needs to go through their cancer journey feeling alone or isolated. Butterfly can offer support, information and encouragement whenever needed. Butterfly is a patient support charity, but perhaps the most important aspect of my work is to offer a unique service in clinic, which is on-site clinical support from a fellow patient. This is a unique partnership between a patient (myself) and the thyroid cancer care team in Newcastle called ‘The Butterfly Model’. I was given the title of Thyroid Cancer Patient Advisor by the Newcastle NHS Foundation Hospital Trust, and work in clinic alongside the team to support patients. Patient audit of this service returned outstanding results and our work has been recognised with the following awards:
Pfizer Excellence in Oncology Peoples Award 2006 NHS Innovations Award 2006 Hospital Doctors of the Year Award (Oncology) 2007 Highly commended by the National Peer Review Team 2007 and invited to present at a National Sharing Good Practice Event 2008 Pfizer Excellence in Oncology Award (Commended) 2009
513
The team include me in business meetings and continuing professional and educational programmes so that I am able to pass on the most up-to-date information and consensus recommendations of the team to my patients. As a patient representative, I am an extended member of the multidisciplinary team and also of the Regional Cancer Network Patient Advisory Panel. I am also invited to attend selected meetings of the National Cancer Research Institute’s Thyroid Cancer Subgroup, and provide patients’ perspectives on national thyroid cancer trial proposals for Cancer Research (UK). I have been invited to present at numerous national and international thyroid cancer conferences, including the World Thyroid Cancer Congress in Toronto in August 2009. This resulted in meeting people who run patient organisations in a number of countries worldwide. Together, we have formed the Thyroid Cancer Alliance and are undertaking a number of projects jointly. The first ever International Survey of Thyroid Cancer Patients is our first project and is underway. The results will be available in April 2010, and we hope to present a report at the International Thyroid Conference in Paris in September 2010. The opportunity that I have been given to support patients with this disease is humbling. I could not do this without the tremendous support of my doctors, my family (particularly my husband), fellow patient members of Butterfly, the Newcastle Hospital Trust Management, and the many individuals and organisations who have been and continue to be outstanding with their support and donations. My thanks to my care team for their expertise, their compassion and their will to continue to strive to improve the care of patients with this disease. I look forward to our continuing partnership!
Clinical Oncology journal homepage: www.elsevier.com/locate/clon
Personal View
Thyroid Cancer: DoctorePatient Partnership K. Farnell Butterfly Thyroid Cancer Trust, UK Received 12 April 2010; accepted 20 April 2010
I write this in March 2010, almost 10 years after I was diagnosed with thyroid cancer. Looking back, so much has happened since then, much of which has been very positive, but my family and I were devastated by my diagnosis at the time. It was a very busy time in my life. I was working with my husband in his very busy dental practice, our son was 12 years old and would soon be preparing for important examinations at school, and my father was chronically ill. Any patient will confirm that waiting to have the final diagnosis of a thyroid nodule which could be cancer, albeit in a very small (about 5%) proportion of patients, is a very stressful time. My diagnosis from fine needle aspiration was inconclusive (THY3); this led to hemithyroidectomy, which confirmed a diagnosis of minimally invasive follicular carcinoma of the thyroid. Completion thyroidectomy followed 1 week later. A 2.5-cm tumour in an awkward position led to difficult surgery, and I sustained a laryngeal nerve injury which produced a left-sided vocal cord palsy; the resulting laryngeal spasms and stridor attacks are unpleasant. I also developed protracted hypocalcaemia, but was successfully weaned off calcium supplementation after 6 years! Then came radioiodine ablation with hypothyroidism (Thyrogen was not available at that time), and treatment in isolation leading to depression and anxiety. Although I was told repeatedly that this was a highly curable cancer (5-year survival 95e100%), it was very difficult to accept this as I had not had contact with anyone who had had this rare cancer, and 5 years seemed a long way off. I was very lucky to have the support of a wonderful family and excellent doctors. I plagued my surgeon and oncologist with endless questions about the disease and my prognosis, and they were exceptionally patient and did their utmost to support me. I was very anxious and depressed during the initial 6 months; the only way I could cope was to find out everything I could about my disease, and I learned fairly quickly that this information needed to be sourced from my professional medical team and not the Internet! Author for correspondence: K. Farnell. E-mail address: enquiries@butterfly.co.uk
I was lucky; I passed my first 6-month diagnostic scan and did not require any further radioiodine ablation treatment, although withdrawing from thyroxine and becoming hypothyroid again was a total pain. The disruption to both normal family and working life was difficult to accept. I was worried when I discovered an enlarged lymph node in my neck a few months later, but this was removed and was benign. A second scan was undertaken with Thyrogen; this was much easier and I was able to carry on with life as normal. I also had the opportunity to have an expert radiologist to carry out my ultrasound scans. Despite excellent support from my family and doctors, I still felt isolated and lonely at times. No one I knew had even heard of thyroid cancer, radioactive iodine, treatment in isolation or ‘diagnostic scans’; the treatment protocol and terminology of this disease are unique, which can make the cancer experience more difficult for patients. In my region, like most in the UK, we did not have access to an oncology nurse, and there was no patient support apart from family and during clinic visits. How did people who were on their own cope with this? I was troubled by this issue, and realised through my own experiences that if patients were well informed with reliable information from the start and given the opportunity to have contact with other patients, it would be beneficial to their well-being. I started to meet with hospital managers and my medical team to talk about improving the situation for patients with thyroid cancer; they could not have been more open or supportive. My surgeon telephoned me and asked if I would talk with a young newly diagnosed patient who was struggling. That was the beginning of the first patient support organisation in the UK, the Butterfly Thyroid Cancer Trust. This young woman was in her 20s and understandably devastated by her diagnosis. We talked together, I shared my experiences about the treatment and what was involved, visited her in hospital and went to scan appointments with her. As well as helping her, this also helped me. She was the first person I knew who was going through what I had gone through. That was 9 years ago and much has happened since then, all of which has been good!
0936-6555/$36.00 Ó 2010 The Royal College of Radiologists. Published by Elsevier Ltd. All rights reserved. doi:10.1016/j.clon.2010.04.001
K. Farnell / Clinical Oncology 22 (2010) 512e513
My doctors started to ‘refer’ newly diagnosed patients, and I gave up work at the dental practice to concentrate on setting up Butterfly on a full-time basis. It has taken a lot of hard work and determination to succeed, but the reward in seeing what good support can do for other patients is wonderful. Butterfly is the first registered charity in the UK dedicated to the support of people affected by thyroid cancer, and is recognised by and has the full support of the healthcare professionals treating patients in the region. The Butterfly website (www.butterfly.org.uk) details what the charity can offer, but to a newly diagnosed patient, the opportunity to meet someone who has had the same disease as them and who is well/cured so many years later is priceless. No one diagnosed with this rare cancer in the UK needs to go through their cancer journey feeling alone or isolated. Butterfly can offer support, information and encouragement whenever needed. Butterfly is a patient support charity, but perhaps the most important aspect of my work is to offer a unique service in clinic, which is on-site clinical support from a fellow patient. This is a unique partnership between a patient (myself) and the thyroid cancer care team in Newcastle called ‘The Butterfly Model’. I was given the title of Thyroid Cancer Patient Advisor by the Newcastle NHS Foundation Hospital Trust, and work in clinic alongside the team to support patients. Patient audit of this service returned outstanding results and our work has been recognised with the following awards:
Pfizer Excellence in Oncology Peoples Award 2006 NHS Innovations Award 2006 Hospital Doctors of the Year Award (Oncology) 2007 Highly commended by the National Peer Review Team 2007 and invited to present at a National Sharing Good Practice Event 2008 Pfizer Excellence in Oncology Award (Commended) 2009
513
The team include me in business meetings and continuing professional and educational programmes so that I am able to pass on the most up-to-date information and consensus recommendations of the team to my patients. As a patient representative, I am an extended member of the multidisciplinary team and also of the Regional Cancer Network Patient Advisory Panel. I am also invited to attend selected meetings of the National Cancer Research Institute’s Thyroid Cancer Subgroup, and provide patients’ perspectives on national thyroid cancer trial proposals for Cancer Research (UK). I have been invited to present at numerous national and international thyroid cancer conferences, including the World Thyroid Cancer Congress in Toronto in August 2009. This resulted in meeting people who run patient organisations in a number of countries worldwide. Together, we have formed the Thyroid Cancer Alliance and are undertaking a number of projects jointly. The first ever International Survey of Thyroid Cancer Patients is our first project and is underway. The results will be available in April 2010, and we hope to present a report at the International Thyroid Conference in Paris in September 2010. The opportunity that I have been given to support patients with this disease is humbling. I could not do this without the tremendous support of my doctors, my family (particularly my husband), fellow patient members of Butterfly, the Newcastle Hospital Trust Management, and the many individuals and organisations who have been and continue to be outstanding with their support and donations. My thanks to my care team for their expertise, their compassion and their will to continue to strive to improve the care of patients with this disease. I look forward to our continuing partnership!