'I just couldn't take anything in'

Marilyn Deurloo talks about her experience

For Marilyn Deurloo her son's sixth birthday wasn't the joyous occasion which she had hoped for.

On that day she was told over the phone that she had been diagnosed with breast cancer following a routine screening appointment.

"I passed the phone over to my husband, but we were both so upset that I don't think that either of us took anything in at all," she said.

New research suggests almost two-thirds of cancer patients do not completely understand what their diagnosis means.

When Marilyn met her consultant she was still in a state of shock, and she says she found it difficult to take in information.

I had only gone for a routine mammogram, and had no symptoms, but I was being told I had a highly invasive form of breast cancer Marilyn Deurloo Patients confused by cancer care

She did not understand the full implications of her diagnosis, or her treatment options.

"I was just in a blind state of panic initially," she said.

"I had only gone for a routine mammogram, and had no symptoms, but I was being told I had a highly invasive form of breast cancer, and that I would need a mastectomy."

Implant

Marilyn did ask whether she would be able to have reconstructive surgery, and she was told that an implant should be fine.

But further tests after surgery revealed that the cancer had spread, and that she would need both radiotherapy and chemotherapy.

The chemotherapy made her unusually unwell and the following course of radiotherapy affected her implant, leaving her in so much pain that it had to be removed.

There was also a mix-up over exactly which form of breast cancer Marilyn had developed.

Initially she was told it was not the HER2 positive form of the disease, only to be later informed that in fact it was.

Marilyn, from St Albans, was diagnosed months before her 50th birthday.

She was forced to give up her work as a special needs teacher, as her illness made her vulnerable to injury. She now works as an educational adviser.

Insensitive approach

Marilyn said she was not encouraged to ask questions, and believes she was made to feel that she was some kind of freak.

When she asked her consultant if she would lose her hair, he responded by saying: "Bald women are really sexy". She didn't laugh.

"Once I was transferred to the Marsden [hospital] everything was explained in a much clearer way," she said. "Maybe because it is a specialist hospital that only deals with cancer.

"But locally it was all rushed, and nothing was clear enough. Part of that was probably due to my stress - all I could think about was 'am I going to live to see my children grow up?'

"But the hospital made me feel it was not normal to be so sick during treatment, and I felt undermined, that there was something wrong with me."

Marilyn has been told there is an 80% chance of her cancer returning, in which case she will be eligible for Herceptin. She has been instructed to keep an eye out for symptoms.

But she says she does not really know what to look for, as the first time there were no physical signs.

"I think the answer may be to have an advocate - somebody who has no emotional involvement in the case - to go along and take down notes or tape the consultation, and then explain things later, when you are feeling calmer.

"It would also be useful if consultants gave patients information prescriptions so they can be guided to the most relevant information for them."