Here are some answers to common questions we often hear about genetic testing for breast and ovarian cancer.
- What family health history do I need to collect?
The Pink Hope website offers resources targeted at investigating, assessing, and understanding your family health history of breast and ovarian cancer. The first information you need to collect is who has had cancer in your family, what type of cancer and the age they developed the cancer.
- What are the costs involved in gene testing?
This depends on many factors. In some situations, you won’t need to pay for genetic testing as it’s covered by public funding. We have written more detail about genetic testing and the costs associated in the Genetic Testing section [LINK}.
- Why are some families offered publicly funded genetic testing and not others?
The genes we know about and can currently test for only explain the risk of cancer in some families with a family history of breast and ovarian cancer. This leaves a larger number of families where the cause/s of the family history of cancer is beyond our current scientific understanding.
Because we have known about genes such as BRCA1 and BRCA2 for many years now and in recent times PALB2, ATM and TP53, Family Cancer Clinics can be more refined in predicting the chance that a family history of cancer is because of a gene mutation. Families who are not offered publicly funded testing often have a chance of a gene mutation which is well below 10%. This means it is more likely their family history is because of gene/s or reasons unrelated to a gene mutation such as BRCA1 or BRCA2, PALB2, ATM, TP53.
In other situations, families meet the threshold for gene testing but there is not a relative who has had cancer to be tested. Offering testing to a person affected by cancer increases the chance of finding, for example, a BRCA1 or BRCA2 gene mutation.
In addition, it helps with interpreting the results of the test and what this means for the risk of other relatives developing breast and ovarian cancer and their own options for gene testing.
- What about people who can’t have genetic testing?
Your doctor and, in relevant situations, a Family Cancer Clinic, can provide an assessment of your risk and work out a plan of how to manage any increased cancer risks posed by your family history of cancer.
Some families may elect to fund the cost of genetic testing of the BRCA1 and BRCA2 genes or a gene panel test even if they know their personal risk of having a gene mutation is low. There are some things to know about the limitations of interpreting a result when done in this way. A Family Cancer Clinic or your GP can organise self-funded genetic testing and it will cost between $400-$2000.
Genetic technology is changing quickly. In the future, we will understand more about hereditary factors that explain family histories of breast and/or ovarian cancer. If you have been to a Family Cancer Clinic, keep them informed of new cancers in the family. You should also ask every few years if there have been new advances in genetic testing and knowledge which could be relevant to your family.
- When can my children be tested?
There has been extensive research in families with known genetic risk. However, the gene mutations associated with cancer development have shown there is no increased risk for cancer in children. Therefore, there is no medical benefit to testing a child.
In addition, by testing a child, there is no longer an option for them to decide when they wish to learn about their risk for themselves. For these reasons, the guidelines that govern Family Cancer Clinics recommend BRCA1/2 gene and panel testing only be offered for persons over 18 years of age.
Many families speak about the meaning of the genetic alteration, or mutation, in a family well before age 18. This can be a good opportunity to understand how a child, adolescent or young adult is feeling about the cancer risks. You can reassure them that their cancer risks are no different to their peers at this young age.
In most cases, young women are more likely to attend for gene testing from their mid 20’s as this is when a woman with an identified gene mutation usually begins a breast cancer screening program. Men usually attend either when they are considering having a family or when they reach their late 30’s-40’s as there are some small increases in cancer risks for men who carry a BRCA1 or BRCA2 gene mutation.
- How do I tell my relatives that they may be at high risk?
This can be a straightforward task for some and a harder task for others. There are a few points to consider which may make it easier. First, think about the timing of when and where to share this news. Make sure the person who is receiving the information can listen to what you are saying and that you have allowed time for them to ask you questions about what it means.
If you’re worried about how a relative may react to this news, consider whether you’re the right person to deliver the news or whether another relative might be better to do this. Think about and practise what you might say. It's helpful to reassure them that there are things they can do about their cancer risk. If you can give them written information to leave with them, this can be helpful for them to read again later.
You might suggest they talk to their local doctor as a first step. You might also suggest family members get information for themselves from a qualified expert at a Family Cancer Clinic [LINK TO ARTICLE]. Explain this does not mean they need to be tested (if genetic testing is available) and a Family Cancer Clinic can provide information on how to manage cancer risks without them being tested.
Genetic information can be hard to understand so avoid medical terminology. Check to see if they have questions. Offer (if you feel comfortable to do so) for them to phone/email you if they have questions at a later date. Try not to say things they may think of as judgemental. Only share your opinion about what to do if asked.
- How do I encourage my relatives to get more advice about BRCA1 or BRCA2 or a gene panel test?
Try to tailor your communication to the person you’re talking to. Reassure them you have told them about your family health history out of concern for their wellbeing. It’s also helpful to remind them there are things they can do to manage the risks involved.
Suggest they talk to their local doctor as a first step, particularly if they have a good relationship with their doctor. You may also suggest they get information for themselves from a qualified expert at a Family Cancer Clinic. Explain this does not mean they need to be tested and a Family Cancer Clinic can provide information on how to manage cancer risks without them being tested.
Whether they wish to know or not know about their potential risk, tell them that you will be available to talk again or give them contact details of someone who can help. Family Cancer Clinics often have letters that have a summary of the important points to get across and how your relatives can contact them for more support. Most importantly, respect that it is their decision to get tested or not.
- Are mutations in BRCA1 and BRCA2 more common in certain racial/ethnic populations than others?
Yes. Research has shown that people of Ashkenazi Jewish descent have a higher chance of certain BRCA1 and BRCA2 mutations than people in the general population. If you are of Ashkenazi Jewish descent and have a close relative with breast or ovarian cancer, it would be worth talking to your local doctor about whether a referral to a Family Cancer Clinic would be warranted. Researchers are still gathering this information about the PALB2, ATM and TP53 gene mutations.
- When will gene testing become available for genes other than BRCA?
Panel testing that screens other genes such as PALB2, ATM and TP53 is available now. However, there will only be some families that this testing will be useful for, so having an appropriate assessment by a Family Cancer Clinic will be important.
- What are the insurance implications in relation to genetic testing?
A family history of cancer and/or genetic testing in you or some of your close relatives can have an impact on the ability to obtain certain types of insurance such as life, disability, trauma and some business and bank loans. Private Health insurance is NOT affected by your family health history or genetic testing.
Insurance companies may make decisions such as not to cover you for the health issues you are at higher risk of or increase the amount you need to pay for having the insurance in place. They have to make reasonable decisions based on your risks and you can appeal if a decision is out of keeping with the risks posed by your family health history or genetic test results.
Insurance policies such as the minimum coverages which are attached to superannuation funds are usually not affected by a family history of cancer or genetic testing but you should always check the terms and conditions.
- What cancer risks are there for men with BRCA mutations?
Men with a BRCA1 and BRCA2 gene mutation have a slightly increased risk of breast cancer when compared to the average man risk of less than 1% by age 70. Find out more about Risk reducing actions for Men here [LINK TO ARTICLE].
- What is Preimplantation Genetic Diagnosis?
Preimplantation Genetic Diagnosis (PGD) is a procedure that aims to allow families to have a child without passing on an inherited condition. This involves an embryo being created via in vitro fertilisation (IVF) and being screened for a particular hereditary gene mutation, before being transferred back to the woman with the hope of a pregnancy continuing.
Any remaining embryos can be frozen for use in the future. There can be significant costs both associated with the IVF procedures and with the PGD testing itself. Although this technology is available, we understand people can have personal, moral and religious views about the use of such technology and many people choose to have a family and not use PGD. Family Cancer Clinics can provide general information about these options and referral on to specialist IVF clinics if couples wish to learn more.