Mrs Keane

"I was absolutely horrified how little I knew about ovarian cancer..."

Sarah Keane visited her GP practice and local hospital 15 times over three years before she was correctly diagnosed with ovarian cancer.

Each time there was a different symptom including severe abdominal pain and swelling, urinary frequency, and constipation – all classic signs of ovarian cancer. But nobody linked them together and each was treated individually.

By the time her illness was correctly identified Sarah’s waist size had soared by four inches, she was putting on weight at the rate of 1lb a day, and felt totally exhausted.

The retired schoolteacher had stage three, aggressive, ovarian cancer which had spread throughout most of the organs of her body. It was so extensive surgery was impossible. She was given just six months to live.

But incredibly Sarah had a miraculous response to chemotherapy. Within six months she was totally clear of cancer. Her CA125 levels – a protein in the blood which is used as an indicator as it is often raised in women with ovarian cancer – had fallen from a staggering 6000 to single figures.

Now, nearly four years later, Sarah is alive and well, free of the disease which threatened to kill her, and dedicating her life to raising awareness of ovarian cancer.

“I was absolutely horrified how little I knew about ovarian cancer and how little the medical profession appeared to know,” said Sarah, a retired schoolteacher from Ludlow, Shropshire. “Once I was diagnosed everything fell into place and I received excellent and speedy treatment.

“All the problems happened before diagnosis. This is why so few women survive ovarian cancer. It can be easily treated if detected early. But there are often no symptoms in early stages and when they do occur they are usually not associated with each other.”

Sarah, 65, first went to her GP in August 1999 with severe constipation for which she was prescribed laxatives. Then her bladder problems began forcing her to get up three or four times a night. She was told to do pelvic floor exercises.

Her abdomen became painful and swollen – a typical sign of ovarian cancer especially when coupled with the previous symptoms – she suffered severe fatigue and developed an umbilical hernia.

“I felt so unwell and exhausted that I had to give up my job as a supply teacher in the local primary school which I absolutely loved. I just did not have the energy any more,” said Sarah. “It was so unlike me. I had always been full of get-up and go. I tried not to complain because I did not want to make a fuss. I felt that if something was seriously wrong with me the doctors would have realised it. I was told it was probably my age.”

Sarah’s condition became worse. She started to suffer extreme breathlessness, difficulty in swallowing, and had diarrhoea alternating with constipation. Eventually in autumn 2002 she was referred as a “non-urgent” patient to the gastrointestinal department at Hereford Hospital.

She had a variety of tests and was told she had a build up of a fluid called ascites in her abdomen, but she was not given a diagnosis.

“I remember the word ovary being mentioned and then I was told to come back at a later date for more tests to check my stomach and bowel,” said Sarah.

“When I got home I put ascites and ovary into a search engine on my computer and the word cancer just kept coming up all the time.

“That was it, I wasn’t waiting any longer. I phoned the consultant’s secretary and was extremely persistent until I got an appointment with a gynaecologist.

“He didn’t even have to examine me. He knew that the ascites combined with my symptoms were cancer. The diagnosis came as a tremendous relief. My husband was outside in the waiting room but I did not even feel I needed him by my side. Suddenly there was a reason for my feeling so ill.”

Then an incredible 6 litres of ascites was removed from her swollen abdomen at Hereford Hospital.
Sarah was referred to the nearest specialist cancer centre at Cheltenham hospital – a two hour drive away - where within days she was undergoing surgery.

But the cancer was so extensive surgeons were unable to remove most of it. They took out her ovaries and fallopian tubes and stitched her back up.

“Apparently the cancer was like a mould growing over all the organs in my abdomen,” said Sarah. “My womb, stomach, bowel, kidneys. It was everywhere. I hadn’t even considered this. It never occurred to me that the cancer could be inoperable.”

Her only option was chemotherapy. But the first infusion which involved a cocktail of two drugs left her feeling so ill that she was determined not to continue the course.

“The abdominal pain was so awful that I don’t remember anything for two days and thought I would rather die than go through that again,” said Sarah. “But my consultant changed the prescription and gave me carboplatin on its own and I coped fine with that. I had the usual side effects such as losing my hair and diarrhoea. But that was nothing compared to the symptoms of the cancer.”

In July 2003 after six sessions of chemotherapy Sarah was given the all-clear. She was in remission. There were no signs of cancer. She was in remission for two years and in February 2004 launched her crusade to raise awareness of the condition.

The first step in her campaign was to approach her local surgery, not to complain but to encourage them to hold a training day for GPs and practice nurses. Her proudest achievement was seeing a symptoms leaflet she had written pinned up in every nurses’ office.

Next she spread her message to the GP advisor and her consultant at Hereford Hospital and saw it go out to every surgery in the county. She became an active member of several ovarian cancer charities, joined the committee of support group Ovacome, and became involved in local NHS bodies and patient groups. She is deputy chair of the Hereford Users Group (for cancer patients in the area) and is on the board of governors of Cheltenham hospital NHS Trust.

“I had never done anything like this before. It is quite out of character,” she said. “Although teaching takes an enormous amount of energy and creativity and I have been a deputy head and a head.
“But I am so angry at what had happened to me and so determined it will not happen to anyone else. I want to make a difference.

“I soon learnt that if you copy your local MP into every letter you write to anyone in the health service things soon get moving.

"After chemotherapy you are brain dead for a while. You can’t do or think about anything. But then I got an enormous surge of great mental energy. I wanted to do everything.

“This is something I feel so very strongly about and suddenly I am putting all my energy into this one direction.”

But in autumn last year a routine check-up showed her CA125 levels were climbing again, microscopic cancer tumours were reappearing. In December Sarah had a total hysterectomy and the omentum – a sheet of fatty tissue inside the abdomen – removed followed by two more courses of chemotherapy.

She has been back in remission, and back campaigning, since January this year.

“I am alive and I am doing this for all the other women who did not make it. I met two women who had both been wrongly diagnosed with irritable bowel syndrome and died. I was lucky and however soppy it may sound I feel I have been spared for a reason.”

“All this campaigning is totally new to me but it is enormous fun and I meet interesting people. When you have cancer you lose all your confidence. You fear that you are not well enough to do all sorts of things.”

“My first step was to go to an Ovacome user group meeting in London and I have never looked back. “

“I have found an enormous number of gaps in service provision . I want better facilities for all cancer patients, especially those in rural areas. I had a four hour round trip to have chemotherapy. Even getting to my local hospital to have routine blood tests every three months taken an hour each way.

“But more than anything I want to increase awareness both among the public and the professionals so other women don’t suffer like I did.”

“I am fairly well now although I still get pain because of all the scar tissue from the cancer inside my abdomen. I know that the longer I stay in remission the better chances I will have if I relapse again. It may well happen but in the meantime I am busy and positive.”