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Risk reducing options

Sarah's story

Sarah's story

"Mum died in February 2013 and for a while I just left the whole idea of preventative surgery. "

If a family member has predictive testing and been found to carry a gene mutation, they will have had genetic counselling to discuss the implications and risk management options.

We have outlined previously what the options are for breast cancer. However, women may also want to consider risk reducing options for ovarian cancer. 

Removal of both of ovaries and fallopian tubes - bilateral salpingo-oophrectomy

This operation will greatly reduce the risk of developing ovarian cancer and may, to a lesser extent, reduce the risk of breast cancer, although the evidence is unclear about this. There is still a small chance of developing ovarian cancer after the surgery because microscopic cancer cells invisible to the naked eye may have started to grow in the abdomen or pelvis before the ovaries are removed, and these cells will not be removed during the operation.

The operation gives the greatest benefit if it is carried out before your relative goes through the menopause. Removal of both ovaries will mean the immediate start of the menopause. Their medical team will discuss with them the advantages, disadvantages and risks of taking hormone replacement therapy (HRT) to manage the side effects of early menopause.

“My sister was diagnosed with breast cancer about a month before getting her BRCA result. She took immediate action, with a bilateral mastectomy and reconstruction. A few months after completing treatment, she had her ovaries removed, minimising her risk of having ovarian cancer. Six years later she remains cancer free. My niece plans to have surgery on completion of her family.” Adele

Contraceptive pill

Women who have used the oral contraceptive pill for five years or more are less likely to develop ovarian cancer than women who have never used it. Using the contraceptive pill can reduce the risk of developing non-mucinous ovarian cancer (over 90 per cent of ovarian cancers diagnosed are non-mucinous), by as much as 50 per cent. Although the contraceptive pill has been shown to reduce the risk of ovarian cancer, it is not suitable for all women and it can slightly increase a woman’s risk of developing breast cancer, although this risk is reversible within five years of stopping the oral contraceptive pill.

A woman thinking of taking the oral contraceptive pill should first discuss her options with her GP or genetic counsellor. 

Other implications

Karen and MaryFamily planning

The genetic counsellor will be able to provide more information to your family members about having children and the impact on the children they’ve had already.

The family planning options for men and women with a BRCA mutation are:

  • To have children without any intervention - each child would have a 50 per cent chance of inheriting the mutation
  • To not to have children at all because of the risk of passing on the BRCA gene mutation
  • Adoption 
  • Egg or sperm donation 
  • Prenatal testing - some couples may choose to get pregnant naturally and have a test during the pregnancy to see if the baby has inherited the BRCA mutation. The couple could then decide whether to continue with the pregnancy.
  • Pre-implantation genetic diagnosis (PGD) – some couples may choose this option to avoid passing the BRCA mutation to their children. PGD involves removing a woman’s eggs to fertilize in a test tube (IVF). When the embryos reach a certain size (at a few days old), a cell is removed and is tested for the hereditary disease. Once the genetic status is determined, the parents can decide which embryos they want implanted.

Your family members may want to discuss their options with their geneticist who can explain the implications and the funding options available, but it’s important to note that there is no right or wrong answer.

“I was originally told about the possibility of using PGD to have children early on when talking to a genetic counsellor about having the BRCA mutation. The genetic counsellor also told me about the other options including having children naturally in the hope that they would be born without the gene or conceiving naturally then having the embryo tested at 12 weeks. It was through her that I was referred onto a hospital that carries out PGD where I was further informed about PGD in detail. All parents want to protect their children from harm and although I am aware that PGD can't get rid of all the health risks to my unborn child, it does mean that my child won't have the genetic make-up that puts it at such a high risk of breast and ovarian cancer. I also don't want them to have to make the decisions I've had to make on whether to have risk reducing surgery or not, or for them to have to decide on how to have children or for them to worry about it. For me and my family using PGD means that the gene fault stops with me; future generations of my family will never have to worry about a gene that puts them at such high risk of cancer.” Carly

Insurance

An agreement is in place which guarantees that anyone who has had a predictive genetic test (eg for breast and ovarian cancer), can take out life and critical illness insurance cover without disclosing the results. This agreement, known as a Concordat and Moratorium on genetics and insurance, has been in place since 2001 and has been extended until 2019.

However you should check out the Association of British Insurers (ABI) for the latest guidance at abi.org.uk or on 020 7600 3333.

Find out more

 

The information on this page is approved by the Information Standard scheme to ensure that it provides accurate and high-quality information.

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Last reviewed: July 2016
Next review: June 2019