Liz Townsend will never forget the moment she was told she had breast cancer. 'I was called into this tiny office and the consultant, without even looking up at me, said: "Well, it's not good, I'm afraid. You have a cancer which may have spread into your lymph glands. It could mean a full mastectomy".'

She did not even know where her lymph glands were. Liz stumbled out of his office in shock, feeling as if he had passed a 'death sentence'.

That pessimistic forecast four years ago turned out to be wrong and Liz, a 46-year-old businesswoman from Birmingham, is no longer ill. She ended by having a lumpectomy, where just the tumour is removed, not the whole breast. But she is convinced the abrupt announcement left her with depression and anxiety which affected her whole outlook on the disease. 'After that, I never quite trusted any health professional.'

The Observer launches a debate today into the quality and nature of the care that breast cancer patients should be entitled to receive. About 25,000 women a year discover they have the disease, but their experience of diagnosis, treatment and aftercare varies enormously: this is where the real lottery of care lies.

Our three-week investigation into the care of patients ties in with the start of a nationwide consultation by the charity Breakthrough Breast Cancer.

'Finding out that you have breast cancer can be a harrowing and depressing experience which haunts you for years afterwards - but it need not be like that at all,' said Delyth Morgan, chief executive of the charity.

'There are lots of examples of really good innovative changes in hospitals, but it will take a culture shift to drive these through and turn the Government's rhetoric about patient choice into reality. This isn't only about empowering people to ask more questions; it's about empowering the staff to help them make the changes they need to make.'

Some of the charity's research, previously unpublished, throws up startling accounts of how women are treated. In a series of in-depth interviews, some described consultants as inaccessible and remote; others found them warm and friendly.

Most women found the diagnosis devastating, and said it was impossible to absorb the verbal information in full. The lucky ones saw a breast cancer nurse immediately afterwards, which softened the impact of the news.

One woman, diagnosed in 2000, said: 'I saw the doctor and he said "Yes, it's a nasty lump. We need to operate within the next week and that would be a full mastectomy." Having seen my mother go through losing a whole breast, I freaked out. I said, "I can't handle that, no".'

Another said of her breast cancer nurse: 'She explained all sorts of things which I couldn't remember at the time, because the words just go past you. All you hear is cancer, and with that goes the fact that you are going to die.'

The Government's emphasis over the past three years has been to slash waiting times for cancer treatment. Breast cancer units have been the main beneficiary of the extra millions made available, and there is now a plethora of targets to cover waiting times, the screening service and the availability of specialists.

'All of these matter because the wait to see a doctor can be agonising,' said Morgan. 'The extra money and the extra staff have made a real difference. But it does not give you the full story.'

Other statistics, revealing the paucity of information women are given, are equally startling - 49 per cent of breast cancer patients are not given any written information about their condition at the time of diagnosis. Although most patients have the bad news broken to them by a hospital doctor, the time they spend with the consultant varies hugely.

A government survey of cancer patients two years ago showed that one in six reported spending 10 minutes or less with their doctor. Most had between 10 minutes and half an hour, which they felt was about right.

Most patients understood the doctor's explanation of what was wrong and the purpose of further tests, but nearly one in three women could not make sense of the explanations of the different types of treatment available.

The survey showed a great variation between the best and the worst hospital trusts. When it came to talking about outcomes, for example, only 6 per cent of patients in the best hospitals felt they had not been given enough facts. In the worst trusts, this rose to 31 per cent. But there is clearly a wish among women to be given far more detailed information about the condition.

Nearly one in five patients would have liked to have been told more about what the outcome of their first session of surgery, radiotherapy or chemotherapy would mean for their future.

One of those trying to improve matters is Nick Carty, a surgeon at Salisbury District Hospital in Wiltshire, who has succeeded in ensuring that each woman diagnosed with breast cancer at his trust is given a small A5 diary, her record of everything that will happen to her, from details of her diagnosis, to the treatment she will receive, whether it is surgery, drugs or radiotherapy.

'We put in all the information we can, but there is still uncertainty about how honest you should be with the patient. Do you tell them there is a 70 per cent chance of survival at their stage?' Carty said. 'If someone told me I had a 10 per cent chance, I'm the type who would see that as something to aim for, but it might sink others into depression. There are definitely patients who don't want to know everything.'

Others would disagree. Lesley Fallowfield, the professsor of psycho-oncology at Brighton and Sussex Medical School, carried out a study of the way in which bad news is broken to patients, and looked at how much patients really want to know.

'The overwhelming majority, 87 per cent, said "I want all the information, good or bad",' Fallowfield said. 'The research showed us that women who feel happy with the way news is given to them are far less prone to anxiety and depression.'

Tracey Elkins's battle to communicate with doctors has left her profoundly disillusioned over the way the NHS treats its patients. Her mother died in her forties from breast cancer, and the daughter had always feared she too might inherit it.

When she was 34, she asked her GP if she might have a mammogram to check everything was OK. 'He said, I really don't think there's anything for you to worry about. You're still very young.'

It took her two years to secure the mammogram, which did indeed detect breast cancer. She was then referred to a specialist, Dr James McKay in Cambridge.

She decided to have both breasts removed as a bilateral mastectomy, but this did not prevent the cancer from returning this year in the right breast. Her body was producing too much oestrogen and she had to have both her ovaries removed. She recently discovered the cancer has spread to her bones, and may be in her liver.

Elkins's strange and terrible journey through the NHS has left her an expert in the field. She knows all the terms, all the questions to ask and is grateful to have finally had the help of McKay. But she is angry to be still waiting to find out whether or not she carries the BRCA2 gene, one that expresses familial breast cancer, and one that may be carried by her three sons.

'There are so many extraordinary people working in the NHS, but there is still so much missing,' the 42-year-old said from her home in Wickford, Essex. 'I've always asked about my cancer, but there are lots of people who don't ask, so they're not told everything. I've no idea what the next year holds, but I'm going to keep on asking the questions.'

Observer campaign: send us your views

Email The Observer at breast.cancer@observer.co.uk

Or you can contact Breakthrough Breast Cancer at info@breakthrough.org.uk with your views on the draft statement.