By Dr Tom Cawood
Consultant Endocrinologist and Physician
When people are told they may have thyroid cancer, the C word is usually what they hear the loudest. It can be almost impossible to hear anything else, no matter how helpful and sympathetic the bearer of the bad news may be. It’s like being caught in the headlights. How can you be expected to hear and process all that is going on, during what may be the most frightening doctor’s appointment you’ve ever been a part of?
If you have a lump in your neck, it could be thyroid cancer. But when faced with the C-word you probably can’t rationally take in that most thyroid lumps are benign (not cancer). Even though you may hear that thyroid lumps are common and can be found in about half of all normal adults, you’ll probably still be thinking that yours is the rare nasty one.
Now that the C-word is out there you may well be thinking about what the C-word means to you and how cancer has affected you or those around you. Perhaps an aunty died of breast cancer, perhaps your grandfather died of lung cancer or some poor child at your school (you feel ashamed that you have since forgotten his name) died of leukaemia. There won’t be many positive things that come to mind when you hear the C-word. And now someone is saying that you, or your loved one, might have thyroid cancer.
If you’ve just been told you might have thyroid cancer, then it’s probably too early in your thyroid cancer journey to know what this news is likely to mean for you or your family. However, now might be a good time to halt your C-related fears from accelerating out of proportion, take a deep breath and try to take on board some key messages about thyroid cancer.
One thing that is certain is that there is a huge amount of information about thyroid cancer out there but most of the patients I deal with have found it really hard to get good information at a level they find useful and which is relevant to them. Anne, a patient with thyroid cancer, told us:
“I had tried Googling it. I went on to one site, that lead me on to another site, and another, and they turned out to be contradictory or the cases were really severe, ending in death. You’ve no idea of the quality of the stuff that’s online. Some of the more personal sites rung true, whereas the professional ones I found pretty unhelpful – I didn’t know what information applied to me. But you can relate to peoples’ feelings.”
Trying to plough through a detailed text-book type source of information, which includes descriptions of the rare bad outcomes, is hard work. Soon after a possible diagnosis of thyroid cancer most people are neither mentally or emotionally ready for such a task. However, most patients want to know the important stuff like: 1) What happens next? 2) What treatment do I need? 3) What’s the likely outcome?
So let’s address these one at a time.
This depends where you are at now but generally, if you have a lump in your neck (that hasn’t been there all your life, like your voice-box!), then you need to know what it is. This will likely involve you seeing your doctor, having them examine you and do some further tests that might be blood tests, scans and a needle biopsy.
With most lumps, in order to better understand what it is, you need to have cells from it looked at down the microscope. Therefore, a needle biopsy (called FNA – Fine Needle Aspiration) is often required. This hurts a bit – a bit like having a blood sample taken - but it’s fairly quick and usually not too bad. If your lump is difficult to feel, some additional tests are sometimes required but the upshot is that in order to know what to do about it, your doctor needs to know exactly what it is.
That depends on what your lump is. Your thyroid nodule is likely to be a benign (non-cancerous) lump because more than 9 out of 10 thyroid nodules are benign.
If yours is benign, in general it doesn’t need any treatment and can be left well alone unless it eventually grows big enough to start interfering with things in the neck (like swallowing). If it does get that big then it will probably need to be surgically removed.
If your nodule is thyroid cancer (the C-word), it will probably need further treatment. There are a number of different types of thyroid cancer and the treatment plan may change depending on which type it is. The next step usually involves surgically removing the thyroid gland.
Some people also benefit from radioiodine treatment. This involves taking a drink or tablet of radioactive iodine which gets taken up by the thyroid cancer cells where it then kills the cancer cell from the inside. Other cells in the body are not very good at taking up radioiodine so don’t get much affected by the radioiodine. It’s therefore a nice way of zapping thyroid cancer cells without harming your normal cells.
Once your surgery and radioiodine is behind you, you would then be followed up in a thyroid clinic for many years, with blood tests and scans, to look for any signs of the thyroid cancer still hanging around or returning. Importantly, if thyroid cancer does return that’s not such bad news compared to many other cancers. If thyroid cancer returns it can often be effectively treated with repeat surgery or radioiodine. So whilst a recurrence is a set-back, it’s usually more like an obstacle to be overcome, rather than a disaster.
It’s very difficult to predict what your outcome is likely to be because there are so many factors involved such as your age, type of cancer, how advanced it is, etc.
However, many people with thyroid cancer do well. The type of thyroid cancer you have can affect how well you do. Broadly speaking there are 4 types of thyroid cancer:
These are listed roughly in order of their behavior with papillary being probably the least aggressive, with the best outcome, and anaplastic (which is very rare) being the most aggressive with the worst outcome. Papillary and Follicular are similar, in that they largely behave like undisciplined thyroid cells (they usually suck up radioiodine and so can be killed with radioiodine). Medullary is quite different and is usually dealt with by surgery alone. Anaplastic is very difficult to treat, and the focus is more on managing symptoms and coping with all the issues that surround coping with an aggressive, treatment-resistant tumor.
If you like numbers, Stage 1 is the stage with the least advanced cancer and the best outlook and stage 4 is the stage with the most advanced cancer with the worst outlook. For most patients with Stage 1 or 2 thyroid cancer, the 5-year survival from the cancer is nearly 100%. Those with Stage 3 thyroid cancer have a 70 to 90% 5 year survival and those with Stage 4 cancer have a 30 to 50% 5 year survival rate.
These numbers are based on the outcome of lots of patients and may not apply accurately to you (you may do better or worse than these average figures) but the overall message is that with thyroid cancer, even if it has spread, there is a good chance that you will either be cured or that the cancer will be kept under control for the long-term.
So whilst thyroid cancer is definitely a C-word, perhaps the C word should be ‘cloud’. Most clouds have a silver lining, and perhaps an important positive that can come out of thyroid cancer is that whilst it is a real scare, most people do well.
Some people have found that thyroid cancer can be looked at as an opportunity to put other problems into perspective and help not only deal with the thyroid cancer but deal with their other problems as well.
For the relatively lucky majority, for whom thyroid cancer is not going to reduce their total number of heart beats, thyroid cancer is often viewed as a wake-up call that enables the person to get the most out of life. The preciousness of life and time is forced into focus. For those with thyroid cancer that is more extensive then it’s arguably all the more important to take steps to value and maximize the happiness and fulfillment from what time remains.
About Dr Tom
Dr Tom Cawood Ph.D., M.B.Ch.B.(Hons), B.Sc.(Hons), M.R.C.P.(UK), F.R.A.C.P.(NZ) is a consulting physician and endocrinologist working in the field of thyroid cancer.
Dr Cawood gained his medical degree with honours from Glasgow University in Scotland in 1998. He also completed a Bachelor of Science degree with first class honours in pharmacology, and a Ph.D. at University College Dublin (Ireland) looking at thyroid eye disease. He has passed post-graduate medical exams in both the United Kingdom and New Zealand.
Read more here: www.thyroidcancer.support/about-dr-tom.html
Some suggested sources of further information:
Thyroid Cancer Support
Written by doctors and patients. Intended to provide the important information, plus patients’ stories, Q&A, and an opportunity to ask a specialist questions.
Cancer Research UK
From one of the world’s leading charities dedicated to beating cancer through research.
American Cancer Society
The American Cancer Society is a nationwide, community-based voluntary health organization dedicated to eliminating cancer as a major health problem.