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A trial to prevent breast cancer

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Sandy Simpkins is 57. She has a strong family history of breast and ovarian cancer, her mother and maternal grandmother both died from ovarian cancer in their early 50s and her maternal aunt had breast cancer. This is her story about how she decided to take part in the IBIS 2 clinical trial.

This clinical trial is studying how to prevent breast cancer in women who are considered to have a higher than average risk of developing the disease. Even though it was Sandy’s aunt who had breast cancer, we know that there can be a significant link between breast and ovarian cancer, particularly when they occur on the same side of the family in close relatives.

Why I was concerned

My mother died from ovarian cancer at the age of 52. I nursed her through this illness despite being pregnant with my first child. Mum missed the birth by 3 weeks. I knew that my grandmother had also died from ovarian cancer and that my aunt had had breast cancer at 58, so I became very aware of my own risk of cancer and I was determined to pursue every avenue to protect myself. I had a hysterectomy and my ovaries removed when I was 50, but I was still concerned about my risk of breast cancer because I was aware of the link between the two cancers.

How I heard about IBIS 2

I first read about the IBIS 2 trial in a national newspaper. I discovered that the nearest hospital taking part was in Bristol and rang the team running the clinical trial. They asked me a few brief questions about myself and once they established I was eligible to take part in the trial they made me an appointment to be seen at the hospital.

Taking part in the trial

At my first appointment I met the doctor in charge of the trial in Bristol and the research nurse Catharine. They explained all about how the trial worked. They told me that they were researching whether a drug called anastrozole, which reduces levels of oestrogen, can lower the risk of breast cancer. I understood that as part of the trial I would be put into one of two groups. One group have the anastrozole, the other group have a placebo or dummy tablet. I was told that a computer does this randomisation and that no one in the team knows which group you have been placed in.

The team gave me a lot of written information and were very careful to make sure that I understood everything about the trial. When I agreed to take part I signed a consent form. That same day I filled in a questionnaire, had a mammogram and a blood test and picked up my first 6 months worth of tablets. I returned to the hospital 6 months later and then 6 months after that when I also had another blood test. I now go to the hospital once a year. As part of the trial I have a mammogram every 18 months. In total I will be taking part in the trial for 5 years. I get on really well with Catharine, the research nurse, and know that I can contact her at anytime with any questions or concerns I have.

I also elected to take part in a sub study connected to the trial that is looking at bone density. You didn’t have to, but I volunteered to take part in this study. The clinical trials team explained that as levels of oestrogen in your body decline you are at increased risk of bone thinning. So as part of this study I have had a special scan called a DEXA scan. This is a bit like an x-ray and I have had two so far and will have another two before the end of the study.

The benefits and disadvantages

For me there have only been advantages to taking part in the trial- both physically and psychologically. By taking part in the bone study I found that my bones were thinner than they should be for a woman of my age, so I now take both vitamin D and calcium supplements. I would never have found out about this if I wasn’t taking part in the study.

Psychologically I find it really reassuring to have the regular mammograms and annual appointments. It makes me feel that some one is looking out for me and that I have now done all I can to protect myself.

I have a 29 year old daughter. I would love to think that by taking part in this trial now, I am investing in her future and all other women who might have an increased risk of breast cancer.

Fact file

  • Breast cancer is the most common cancer in the UK with almost 42,000 women diagnosed every year and just under 300 men
  • More than 10% of people with a cancer diagnosis in England and Wales now participate in a clinical trial
  • In IBIS 2 anastrozole (or a placebo, or 'dummy' tablet) will be given to post-menopausal women who are at a 'high risk' of developing breast cancer

Doctors hope that anastrozole might help prevent breast cancer from developing in these women. You can look at the IBIS2 trial on our clinical trials database on this link.

More information

Listen to Sandy talk about her involvement in IBIS 2.

Read more about breast cancer risks and causes.

Read more about clinical trials

Find a clinical trial on our clinical trials database written specially for people with cancer and the general public.

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Updated: 11 September 2009