Mrs Maxwell

“I just wish I’d had more information sooner.”

Jan Maxwell was horrified at the lack of awareness, information and support when she was diagnosed with endometrial (womb) cancer.

The 58-year-old teacher and counsellor was totally unaware of the disease that effects the lining of the womb and knew nothing of the symptoms, treatment, or prognosis.

But when she tried to find out, she hit a brick wall.

“I am well aware of my body and have cervical smear tests and mammograms regularly,” said Jan, a widow with two grown-up sons. “But I had never heard or read anything about endometrial cancer."

“When I was diagnosed there were loads of leaflets for every other type of cancer, and support groups galore, but nothing for endometrial cancer.”

“I wrongly thought this meant it was nothing to worry about, something so insignificant and easy to treat that there was no point in providing any information or setting up a support group.”

In fact endometrial cancer is the fifth most common cancer in women and claims 1,500 lives each year.

Yet Jan had blissfully ignored the tell-tale symptom of an abnormal vaginal discharge for more than a year, thinking it was a side effect of the menopause or HRT.

“I was not in any pain and did not feel ill,” said Jan from Peckham, South East London. “The only problem was the discharge which was more of a nuisance than anything else. It was not even considered that serious or urgent when I eventually went to the GP in December 2004."

“I was referred to Guy’s Hospital for an ultrasound scan which I had two months later. I then I waited another four months before I had an internal ultrasound.”

That showed what Jan was told were possible polyps or cysts and she was booked into hospital for further investigations, under general anaesthetic.

“I was not in the least bit concerned,” she said. “I’d had an ovarian cyst when I was eight years old which was removed and everything was fine. So I did not think it was a big deal to have another cyst."

“At no time was the word 'cancer' even mentioned. It never occurred to me that anything serious could be wrong with me.”

It was in mid July, a week after the tests, that Jan was given the devastating diagnosis that she had cancer.

“”I was on my own, expecting to be told that the polyps had been removed and everything was OK,” said Jan. “I was not expecting bad news."

“The next thing I knew the consultant was telling me that they had found something in the wall of the womb which was probably cancer and that they had to remove it. I needed to sign a consent form for a total hysterectomy, and for my fallopian tubes, ovaries, and pelvic lymph glands to be removed."

“I went into total shock. When I am confronted with difficult situations I just freeze and that is what I did then.

I just sat there accepting everything I was told, and nodding and smiling. But inside I was in turmoil. I was lost for words. I could not think what to ask."

“It wasn’t until I left the consulting room and sat down outside the hospital that I just broke down and burst into tears. It was very difficult to take on board."

“Once I got home it was as if nothing had happened. I put it all out of my mind. I didn’t have cancer. I felt fine. So I carried on as normal and did not tell anyone.

“I could not deal with this. I was too busy at work. I work in adult education and was organising a week-long workshop for people with learning difficulties. I did not have time to be ill so I wasn’t ill."

“I also thought that because so little had been made of it at the hospital and because there were no support groups that it wasn’t that bad. I should not make a fuss. I was better off than other people with other cancers."

“I wasn’t worried about the hysterectomy. I’d had my family.”

A week later Jan was admitted to hospital for surgery.

“Once again I felt a fraud because I felt so well after the operation,” said Jan. “I was not in any pain, just a bit sore. The worst thing was the appalling scar that is five inches long and makes my stomach asymmetrical and lopsided. I felt, and still do feel deformed.”

It was another week before the severity of having cancer finally hit Jan.

“I was still in hospital and ever the optimist and waiting to be given the all-clear and discharged when I was told, in front of an audience of trainees, that the cancer had spread to my lymph nodes and I would need radiotherapy.” “I had never even considered this. Once again I had this frozen exterior but inside I was in a terrible state.”

Six weeks later Jan began radiotherapy, five days a week for five weeks.

It left her totally exhausted. But she still managed to work a few hours each week and in January returned to full-time work.

But she soon began to realise she had not made such a miraculous recovery and by May had reduced her workload to three days a week.

“Unfortunately it has taken much longer than I thought to get over the radical surgery and the radiotherapy,” said Jan. “I just tried to do too much too soon."

“My advice to any woman is not to ignore any symptoms that go on for too long. Don’t think they will just go away or are just nothing important."

“Because I could not find out anything about endometrial cancer, I felt that it wasn’t serious. I wrongly thought that a cervical smear test checked out the condition of the whole womb, not just the cervix.

“I just wish I’d had more information sooner.”