This site represents my effort to fill a gap in the information available on the web about papillary thyroid carcinoma.  When I was diagnosed with this disease in January 1999, I wanted to find out all I could about it.  A great deal of information was available on the web, but it was highly scattered.  Some sites had medical journals that answered my more detailed questions if I could just find the right reference; some had patient information that was occasionally contradictory, and usually too generalised to be useful; some sites were geared toward medical specialists and used words I didn't understand, while concerning themselves with details that did not seem relevant to the patient side of the disease.  What I needed was a single site that gave a frank and intelligent view of the disease, with links to sources for my more detailed questions.

That source ended up being largely my doctors, and ultimately the medical journals and textbooks that I had originally found so impenetrable, rather than the Web.  As I gathered my questions and kept track of the answers, it occured to me that others might wish they had my notes.  Hence, I started to put together a list of questions and answers for a web page, aimed at others diagnosed with the disease.

This project has taken me much farther into the world of medical research than I had anticipated. I came to realise that, far from a simple cancer where all that needs to be known for treatment is already known, this is a cancer which enjoys a significant amount of debate, especially around the subject of treatment.

This site is intended to educate only in the sense that it is designed to provoke questioning and thought.  I have enlisted feedback from experts to try to make the information here as factual and representative as possible. However, even accurate representations of current views are not "facts" but "hypotheses" - our best understanding at the present.

In my personal opinion, people with cancer should not accept without question someone else's view of their disease. We are all ultimately responsible for our own health, and while trust in our doctors is important, it is also appropriate that we participate as educated decision-makers in our healthcare. After all, as long as we are conscious, we have the final decision in what treatments are carried out, what medicine we take, and so on.

To be blunt, no one has all the answers on thyroid cancer, not even our doctors. Even where there is a generally accepted view, there are often choices. We owe it to ourselves, then, to use the information and viewpoints available and, in discussion with our doctors, come to shared understanding and mutually agreed decisions about our healthcare. We must make decisions about the balance between pain relief and side effects, the risks and benefits associated with various treatment alternatives, and other decisions that affect our lives.  No two people are alike, and therefore there can be no single medical answer that fits all people.  We, as well as our doctors, have a role to play in making decisions about our treatment.

I hope you will benefit from the information I provide here. If there are any questions you would like to see added urgently, or information you feel is inaccurate, misleading, or unhelpful, please do not hesitate to let me know how you would like the site improved.  I will endeavour to update the site quarterly, and would welcome feedback from anyone who has used it.

I have been exceptionally blessed in the medical professionals I have encountered during this illness. From the first inklings of a problem, recognized by Mr Al-Hejazi at the London Clinic, to my GPs referral to the ENT Team at the Bath Clinic, everyone has dealt with me in a realistic and also sensitive way. I would not have wanted the potential danger I faced hidden from me in any way. All of these individuals managed not only candour but also a sensitivity that left me feeling supported throughout my illness and recovery.

From the Bath Clinic I was transferred to the excellent care of Royal United Hospital in Bath, where Mr Slack, my referring specialist, handed me over to the care of Mr Paul Maddox, a thyroid specialist, and Mr John Waldron, a specialist in neck dissections who had trained at the Royal Marsden, the UK's leading cancer hospital. They enlisted Carol Peedon, the anesthesiologist responsible for my survival during my 7 hour ordeal on the operating table. All of them spoke with me prior to my operation, and to Mr Waldron I owe particular thanks for giving up a good hour of his evening at home several days before my operation so that I could ask him all the questions that were filling my thoughts. It was his openness, frankness, and firmness about relaxing and preparing myself mentally that allowed me to round off my last few days before the operation as productively and as positively as I did.

As a team, this group performed spectacularly. The general wisdom among thyroid cancer specialists and patients is that no one ever gets everything out the first time - there is always some little scrap of thyroid left (which is commonly removed through radioactive iodine treatment). One could hardly expect my case to be exceptional - it was multifocal, unencapsulated, surrounded by "sticky" secondaries, and generally a mess. Despite this, these doctors performed the supposedly impossible, and managed to remove all trace of thyroid tissue, cancerous or otherwise. I consider myself very lucky to have had such an expert team on my side.

I must also single out the Nursing Team at the Royal United Hospital in Bath for their dedicated care that went beyond any I have seen elsewhere. I could not begin to name all the individuals who made my stay bearable and even enjoyable, but I will try to name a few as a sample of what the team is like. One of the first I met was Elaine, an old hand at nursing but new to the RUH, who seemed to take it into her head to use her initiation period in befriending everyone in sight, including me. My last hour before the operation would not have been nearly as comfortable were it not for her. Julian, the duty nurse in Intensive Care, sticks in my mind because of the absolutely effortless way he seemed to deal with each incoming need, whether it was a phone call or a patient in need of a bath. Then there was Abbey, who always seemed to be there with any practical needs – I very much doubt that any situation could have flustered her. Obviously, there were dozens of nurses and assistants on my main ward and in intensive care whom I cannot possibly begin to describe, but by now you must realise that they made up a major part of the fabric of my experience over my six days in hospital, and I cannot imagine what my recovery would have been like without their dedication, friendliness, and constant, sensitive care.

Having said all this, I hardly know where to begin to try to do credit to my family's role in my recovery. My husband, first and foremost, was an absolute rock for me during this time, though I know he didn't really feel that way himself. He was tirelessly helpful, endlessly patient as my moods swung about prior to my operation, and incredibly generous with his time in both nursing me and managing life around me.

My extended family too, on both sides, have given me their undivided support. My parents and brother were very upbeat, my parents having both already gone through lymphoma in the past year – they assured me that I had no need to worry about anything other than getting myself well. My parents-in-law made the trip out to see me in hospital – about 5 hours each way! – and their cheeful chatter was a great relief during my hospital day. Calls and emails came in from relatives further away, even from my aunt and uncle who are working in the Ukraine, taking time out of their work in a world whose reality is unimaginably grimmer than mine to assure me of their love and their prayers.

Then there were all the calls and cards from friends, offers of help to me and to Richard, especially from our work colleagues. At work my colleagues immediately moved to ensure that I could finish my week (as I expressly wished to do) with as little stress as possible, one colleague even travelling up to Scotland to spend my two last days with me at my client site. Other work friends immediately kicked in with tremendous help, advice, and reassurance, all working to ensure that I felt I had nothing to worry about as I began my leave of absence. Richard's colleagues were similarly supportive, with cards, visits, and offers to do whatever they could. His manager ensured he could work from home while caring for me, and made sure that he understood that he had the firm's support. Given how important Richard's help was in my preparation and recovery, their support for him was invaluable to both of us.

If you have a friend, relative, or colleague who has been diagnosed with cancer or indeed any other disease that may involve some trauma, I would encourage you to please find a way to show your support. If the person you know is anything like me, what they need will vary by time and relationship – they may need access to information, a listening ear, or someone to distract their thoughts onto entirely different topics. Any offer of help, even if it is just in a card that reminds them that you are there if they ever want to ask, is bound to be appreciated. I am very fortunate – I have had far more offers of help than I ever needed – and I sincerely hope that the same will be true for anyone else going through as difficult a time in their life. You, of course, are in a position to make that possible, and I hope you will.

I was diagnosed with papillary thyroid cancer in January 1999, and my operation took place one week later. Each case is unique, so yours will not be exactly like mine. Here are the basic details on my case – this may help you understand why I've come up with the particular collection of information given here.

I was diagnosed at age 32, and doctors were not able to say how long I must have had the cancer before diagnosis. The first symptom, an enlarged lymph node, was noticed in December 1999, four weeks before my eventual diagnosis – at the time it was diagnosed as a likely Stage I lymphoma. I was in excellent health otherwise. Both my parents had been diagnosed and treated for lymphoma in the previous year. There have been other cancers in my family, including my paternal grandfather's death from lung cancer, probably smoking-related. There is a history of abnormally active thyroid in my both my mother's and father's families, although my thyroid was if anything slightly less active than normal. It had been diagnosed as very slightly "hypothyroid" in 1990, as part of an inquiry into possible reasons for my occasional dizzy spells; these were eventually attributed instead to somewhat low blood pressure. There was nothing in my history to lead doctors to expect an increased risk of this type of cancer.

Between my initial symptom and final diagnosis, the cancer appeared to have grown rapidly. The lump detected by my surgeon in December was no larger than the end of my thumb, and at the time I believed it to be a lymph node inflamed by a minor throat infection I was suffering. The lump was about an inch to the right of my esophagus, and when it did not disappear after two weeks, I consulted my GP, who referred me to a specialist.  At that point it seemed slightly larger, and he referred me to a specialist at a clinic in the nearest city.

The specialist aspirated the more obvious lump, which was by this time the size of a tomato, and discovered a second lump next to my thyroid. He investigated with ultrasound, then did a needle biopsy, in which a small sample of tissue is drawn out through a needle. This gave him a positive diagnosis of my condition. The enlargement was apparently due to the cancerous areas having become "cystic", which is to say that they filled up with blood. Thus, their exceptional size and growth - the growth and size that tipped off my doctors - was probably due to the way they started to hemmorhage (filling with blood), rather than due to an unusually rapid growth of the cancer itself.

By the time I went into surgery one week later, the whole tumour mass was the size of a large man's fist, about two thirds of which was the thyroid itself, and the rest infected lymph nodes and connective tissue. The tumour and infected tissue reached down both sides of the cervical cavity under my thyroid, behind my collar bone, and up one side of my neck via the lymph nodes.

At the time of this update, my surgery is complete, I have undergone radioactive iodine treatment, and am now getting into the routine of regular checkups.