Doctor's brave account of life with a genetic timebomb

Doctor Elizabeth Bryan is pleased to be back in the North-East. The internationally known paediatrician, whose late father was the much-admired MP for Beverley, Sir Paul Bryan, spent an idyllic childhood on a North Yorkshire farm and cemented her ties to the region by marrying in York.

It was a mark of her fame as president of the International Society for Twin Studies that 25 pairs of twins formed a guard of honour outside the church in Fulford back in 1978.

But now she is in Newcastle, sitting alongside long-standing friend and former colleague Professor John Burn of the Centre For Life, promoting her remarkable and moving new book Singing The Life: The Story of a Family Affliced by Cancer.

While she is all smiles, Dr Bryan has gone through a physical and psychological ordeal that few women would endure with such good humour and stoicism.

Like thousands of other British women, members of Dr Bryan's family carry the inherited BRCA1 cancer gene, which often causes breast or ovarian cancer in women.

In her case she was told that she had an 80 per cent chance of developing either breast or ovarian cancer in her lifetime. She was also told that she had a 50 per cent chance of passing the same dangerous, defective gene to any children she might have.

The reality of this genetic threat was brought home to her when one after another, her two sisters were struck down with cancer. Bunny, the youngest, who was one of the first women to become a Church of England vicar, died in 1995 after developing ovarian cancer.

HER other sister, Felicity, a successful literary agent, faced a battle with breast cancer which led to a double mastectomy.

Faced with this genetic timebomb, Dr Bryan took the incredibly difficult decision to have both her breasts and her ovaries removed.

Despite making this terrible sacrifice to try to protect herself, in June 2005 a specialist diagnosed that she had pancreatic cancer, one of the most difficult forms of cancer to treat.

Three weeks after her diagnosis she underwent major surgery to remove a tumour and surrounding tissue.

As a doctor she knew only too well the outlook was poor. She recalls that when she returned to the hospital to begin a course of post-operative chemotherapy she read in her notes: "The patient will be followed up every three months until death."

The majority of patients with pancreatic cancer tend to die within 12 months of being diagnosed, some don't even make it that far.

But two years after her diagnosis, Dr Bryan is not only very much alive, but touring the UK promoting her new book.

Although she has written many medical books, she never thought she would write anything so personal.

Indeed, in the prologue, she writes: "If I survive to see this book published, I could come to regret being so open. I hope not. But even if I do, my fervent hope will remain that Singing The Life may add to the understanding of inherited cancers and perhaps other diseases and, most of all, that it may help and comfort some fellow travellers, their relatives, friends or carers, without causing undue distress to those closest and dearest to me."

Among the subjects covered in her frank account include the tattooed nipples on her prosthetic breasts and her perverse pleasure at finding that her illness had caused her to lose excess pounds she had always resented.

Shining through the text is Dr Bryan's positive attitude and optimism.

Despite her situation she says she feels "tremendously loved and buoyed up" by the reaction of family and friends.

The book, published earlier this year, has already attracted numerous admiring comments.

Baroness Helena Kennedy QC, until very recently chairman of the Human Genetics Commission, wrote: "Her indomitable spirit and expansive humanity make this an uplifting and optimistic account; I was left in no doubt that I had just spent time with a truly remarkable woman."

Professor Burn, who last week announced that the Newcastle Centre forLife had acquired a revolutionary new gene sequencer which will speed up and greatly expand the number of genetic checks on patients with strong family histories of cancer, has had the highest regard for Dr Bryan since they worked together as young paediatricians 25 years ago.

"We were both interested in twins, we stayed in touch and she became a world authority," says Prof Burn.

He is hugely impressed by Dr Bryan's book.

"Anyone who does genetic counselling needs to read this book. It is an absolute must. It is so timely because genetic testing is really about to take off," he says.

Dr Bryan is delighted at the news that the Newcastle centre is to become the first in Europe to use the new Roche Genome Sequencer, which was purchased for £500,000 by the Institute of Human Genetics at Newcastle University by the regional development agency One NorthEast.

She even donated a sample of tissue as part of calibration tests to ensure the new machine is working properly.

She is particularly pleased that the new machine will help lift the shadow of inherited cancer from many North-East families.

'AS well as confirming genetic abnormalities it is equally important to find the people who don't have the defective gene. My sisters and I were all going to have our ovaries removed to try to protect us, but you don't want to go through this if you don't need to."

Because Dr Bryan and her writer husband, Ronald Higgins, were unable to have children the issue of passing on the faulty gene did not arise.

But Dr Bryan - who by cruel irony is passionate about children and has no fewer than 14 godchildren - is keen to alert families prone to hereditary cancers to the technological changes in recent years which now make it possible to stop pregnancies at a very early stage if the defective gene is detected.

"It is now possible to avoid passing the gene on to a child. Pre-implantation Genetic Diagnosis (PGD) is done by using in vitro fertilisation. After eggs have been collected from the woman and fertilised by sperm, the resulting embryos can be tested for the gene. One that is negative for the gene would be transferred to the womb," writes Dr Bryan.

"Many people will not want even to consider PGD, but it is important to know what options are available," she adds.

Women with the gene can also have frequent ovarian and breast screening to detect and treat any cancer as early as possible, she adds.

Remarkably, despite her illness, Dr Bryan remains upbeat.

"I am lucky. I am unlikely to be taken by surprise. If my cancer returns, my terminal illness is likely to last several months, or at least some weeks.

"Meanwhile, I live in limbo and must learn to do so with more equanimity. Otherwise these precious months, weeks or days will be wasted."

Singing The Life by Elizabeth Bryan (Vermillion, £12.99