It is two years since my mother Maria died of breast cancer, aged 75, and about five years since she first discovered a lump in her breast. This may sound like a common enough story but we, her family, only found out about the cancer two months before she died.
Stoically, my mother concealed the lump from relatives and friends for as long as she could. Her best friend had done the same thing several years previously and, according to medical professionals, it is not uncommon for elderly patients to hide illness and disease from family and friends and, in doing so, deny themselves life-prolonging treatment. They often feel that they are going to die soon in any case and want to spare family and themselves the misery of prolonged tests and painful treatment. Women tend to conceal cancers, men are more likely to hide coronary heart disease.
My mother's reasons for not telling us were complex. In 1999 my father was diagnosed with a terminal illness. She had probably found the lump by then but kept quiet because she saw the distress my father's illness was causing and the endless round of biopsies. Eight months later he was told he did not have cancer but a rare benign condition. But by that stage my mother was probably too consumed by fear to share her secret with anyone. Her best friends had died of breast cancer so she couldn't confide in them. Most of all, she didn't want to worry us.
We were not surprised that she was constantly tired and pale - after all, she was housebound with arthritis and surviving on a cocktail of powerful painkillers. Fiercely independent, she refused all outside help. Sometimes, my father had to ask neighbours to telephone doctors because she wouldn't let him contact them on her behalf.
We discovered she had the tumour in October 2001, when my father finally confronted her. She was hiding herself away in the bathroom for long stretches, trying to disguise the lump with dressings, refusing meals and not wanting to leave the house. He called a friend in desperation who summoned a GP at once. The doctor asked her why she was spending so much time in the bathroom and she had no choice but to show him the lump. He promised to refer her to a consultant within a week and sent round a district nurse later that day who was adamant that my mother should go to casualty immediately. She only agreed when the nurse refused to leave the house until she went to the hospital.
While waiting in casualty, my mother revealed she had known about the lump for some years and thought it likely to be cancer. But she hadn't wanted to upset her family and then face rounds of chemotherapy when she was old and housebound. The consultant confirmed her fears and told her that the cancer had probably spread. It was not the first time he had come across such a case where the patient's desire for secrecy had led to late diagnosis.
The consultant arranged a mastectomy for the following week. My mother survived it but became significantly worse in the following weeks. She was too weak for chemotherapy or further biopsies to see how far the disease had spread. She was allowed to go home, but was restless, unable to eat, walk or breathe properly. A few weeks later, her breathing deteriorated and she was rushed into hospital with pneumonia and a weak heart, in addition to the cancer. She died at the end of November and I was by her side, clinging to her hand.
My mother seemed relieved when the cancer was finally discovered. The secrecy and fear of the illness was a burden she had carried alone for a long time. Once lifted, her old personality came back. On the ward she acted as a confidante to the younger women coming in to have lumps removed, staying up and comforting them at night. Some of them later bought her soft toys and cards and even sent flowers to her funeral.
As her daughter, however, I was devastated that she had kept the lump secret for so long. When her own close friend concealed breast cancer she had expressed disbelief. I was horrified that she had chosen to do the same thing. I asked her why she hadn't told me, despite our close relationship, and can still remember her response word for word: "I thought you'd have a heart attack with the shock. Sally and Sue told people they had lumps and they still died after going through all that treatment so I knew I would have to die anyway. You should just leave old people alone if they're ill, we all have to die and it's important to die with dignity."
After her death I was devastated by the feeling that I could have done more, and said more.
For months I was unable to understand how someone who had abhorred secrecy so much could have been faced with this dilemma. She had been an extrovert all her life and this just didn't fit in. My husband told me she had made a choice and that I must respect this, however hard.
Delyth Morgan, chief executive of Breakthrough Breast Cancer agrees that the right to privacy is paramount: "Although breast cancer is less of a taboo today, we have to respect an individual's decision regarding whether they tell others. Coming to terms with breast cancer will be different for each individual and while some are comfortable talking about it, others feel they need to protect loved ones by keeping their diagnosis secret."
Professor Amanda Ramirez, of Cancer Research UK's psychosocial group, is conducting a second study into delayed presentation of breast cancer in the elderly and its impact on survival rates: "Our first study at Guy's hospital of 200 women over 65 with breast cancer proved the length of delay in confiding in someone about their illness was critical to survival rates and that age is the biggest risk factor in non-disclosure. An elderly woman who reveals her symptoms within a week of discovering them stands the best chance of recovery. The longer the delay in disclosing, the worse the outcome. This research is backed up by world literature on the subject and we are now looking at methods of targeted intervention for this at risk group."
Dr Jonathan Pearce, of Colwall surgery, Herefordshire, has seen similar cases throughout his 16-year career: "I've certainly noticed the elderly often feel too ashamed to admit they have a lump. They don't want to cause hassle for their families and sometimes they think that if they ignore it, it will go away. Fear of treatment is another factor, as is the fact that they may lose their dignity if they tell someone so life won't be worth living."
As Christmas is traditionally a time for families to get together, it is perhaps worth remembering that an elderly relative could be harbouring a deadly secret. Even though we are saturated with health advice, some people still find it hard to communicate an illness - whatever the reason.
· Breakthrough Breast Cancer 020-7 430 2086 Cancer Research UK Cancer Information Line 020-7061 8355
