Nonna Jones used to joke about her hot flushes. She had already been through the menopause and had never suffered from them then. But, 18 months ago, she started experiencing them once or twice a day for no apparent reason. She noticed they could be brought on by just a sip of wine, making her flush from the top of her head to her fingertips. "For a long time, I just laughed it off, saying I couldn't take my wine any more," says Nonna, 66, a retired hotelier from Inverness.
As well as the flushes, she also began suffering from intermittent diarrhoea. "Otherwise I felt totally fit. I was using the treadmill every day, I swam and I've never gained weight," she says. In fact, she felt so well that she didn't want to bother her GP and, in June last year, wrote instead to The Independent's medical columnist, Dr Fred Kavalier. It was a decision that would lead to the discovery of a potentially life-threatening tumour, 15cm long.
In his reply to Nonna, Dr Kavalier wrote that it is not unusual for women to get menopausal symptoms for many years after their periods stop, but that flushes starting for the first time so long after the menopause are less common. "It may be that your ovaries were producing small amounts of oestrogen all these years, even though your menopause was many years ago. The flushes may, therefore, be your body's response to the complete absence of oestrogen production," he wrote.
But, crucially, he added: "There could be another cause for the flushes, and it is therefore important to discuss the problem with your GP or an endocrinologist."
Nonna still didn't take the flushes seriously and only mentioned them to her GP, almost in passing, a few months later. The doctor immediately suggested a 24-hour urine test, called a 5HIAA. She then referred Nonna to Raigmore Hospital, Inverness, for further tests. They revealed that Nonna had a carcinoid tumour the size of a grapefruit in one of her ovaries. Carcinoid tumours, which involve a certain type of cell, can be benign or malignant. They are usually slow-growing and are most common in the gut, usually in the appendix and small bowel. They can also grow in the lung, pancreas, kidneys or testicles.
Cancer Research UK says the prognosis for malignant tumours is generally very good, depending on their size, where they are, whether they have spread, and the age and general health of the patient. Carcinoid cancer can sometimes be cured with surgery. Even if the tumour cannot be completely removed, it may not cause too many problems as it grows at such a slow rate. But once it has spread - typical secondary areas are the liver, lung, lymph nodes and the lining of the abdomen - it is unlikely to be cured. However, people with secondary carcinoid can live normally for many years. The five-year survival rate for carcinoid cancer that has spread is higher than 90 per cent.
One in 10 patients will experience carcinoid syndrome, which is caused by the tumours releasing hormones into the bloodstream. Symptoms include flushing of the skin, diarrhoea, wheezing and abdominal pain.
"As soon as I heard the doctor saying 'carcin...' I thought, 'Oh crumbs, what's this?' It was the shock of the unknown, really," says Nonna, who is married with two grown-up children and two grandchildren. "It was something I had never heard of. I found it incredible that I didn't know I had got it. I couldn't see it. At the time I was running a business in Inverness and I felt fine. Having read about it afterwards, I see why carcinoid cancer is known as the 'good-looking cancer', because sometimes you feel and look perfectly well."
Nonna had an operation to remove the tumour last April. "I was warned of horrible things beforehand: the tumour might have attached itself to the bowel, for instance, and I would have to have it removed and have a colostomy bag. I was extremely lucky in that it was entirely confined to my ovary; both ovaries were removed."
Tests revealed that the tumour wasn't malignant. However, her surgeon, John Logie, says it could have become so. "It was a big lump. You can hide big lumps in ladies' tummies very easily. It's dangerous in the sense that, unless removed, they can cause long-term problems. There was no evidence of malignancy and the tumour appeared to be completely confined to the ovary. There is the remote possibility that there will be cells elsewhere in Nonna's body, but there is no evidence of that at the present time. Nonna also had carcinoid syndrome, which can lead to heart problems. An operation was required to relieve her symptoms and to prevent further problems.
"This highlights the fact that women who develop symptoms such as flushing when they are past menopause, or have stopped HRT years ago, should seek medical advice. But it must be remembered that this a rare tumour," Mr Logie says.
Nonna is due to have one more 24-hour urine test this month. Since the operation, she has had no more flushes or diarrhoea, and is enormously grateful to all the medics who have helped her on the road back to health - Dr Kavalier, her own GP and the surgical team. "I'm so thankful that my GP was her usual thorough self. Because this is such a rare cancer, it can be passed off as gastric troubles. I didn't mention what Dr Kavalier had suggested, and she picked up on it straight away. Some people have gone for eight to 10 years being misdiagnosed. And without Dr Kavalier, I'm quite sure I wouldn't have mentioned it to my GP because I didn't take it seriously."
Dr Kavalier says: "The question that Nonna sent to me was an example of an unusual symptom occurring at an unusual time in someone's life. If a woman gets flushing at the time when her periods are becoming irregular or stopping, I would have felt more inclined to say, 'It's the menopause.' But because her symptoms occurred long after the menopause, that alerted me to the possibility that she might have something different.
"I think people should go to their GP if they have any unusual symptoms, particularly common symptoms that occur at the wrong time of life, or an unusual combination of symptoms. It is important to point out that carcinoid tumours are incredibly rare and most people who have hot flushes won't have carcinoid tumours. I'm delighted that she found her way to a good GP who knew exactly what to do."Reuse content