Patient Experience
Which family details may assist during your cancer genetic appointment?
To provide you with the most accurate advice, it is necessary to obtain details on your cancer family history. We may request that you complete a ‘Family History Questionnaire’ in advance of your cancer genetics appointment at St James’s Hospital.
Please consider which family member details you can provide for as many close relatives (alive and/or deceased) as possible, who have had cancer and those who have not had cancer, as these details will help us to determine your cancer risk. Helpful details include;
Please also indicate if you or any family members have attended the Cancer Genetics Service at St James’s Hospital (or elsewhere) previously - if known. If you are asked to complete a family history questionnaire this may be used to determine whether you require a consultation appointment at St James’s Hospital. When completing your family history questionnaire, please try to be as accurate and thorough as possible.
If I cannot fully complete a Family History Questionnaire, should I still return it to the Cancer Genetics team?
Yes. We appreciate that you may not have all details of your family and their cancer history, but please complete the family history questionnaire as comprehensively as possible. It may be used to determine whether you require a consultation appointment at St James’s Hospital.
What if I do not wish to undertake Cancer Genetic Testing?
Not everyone who is at risk of a faulty or altered cancer gene will decide to undergo cancer genetic testing. Even if you do not wish to undergo testing, but feel you may be at risk of carrying an alteration in a cancer gene, you can still benefit from a genetic counselling appointment at St James’s Hospital. The information you receive, may help you to make more informed decisions about genetic testing and/or cancer screening and prevention.
What is the cost of cancer genetic testing?
No cost will apply if you are eligible for genetic testing through the public health system.
Can I undergo Cancer Genetic Testing at a private institution (hospital)?
Yes. You may wish to contact private hospitals which provide cancer genetic testing. This is your choice.
I do not have cancer, but a deceased relative who had cancer may have been suitable for genetic testing - should I still attend my appointment?
Yes. The Cancer Genetic team may provide you with cancer screening advice and/or identify another relative with cancer who may be suitable for cancer genetic testing.
Do I need to fast (not eat), prior to my cancer genetic blood test?
No. You do not need to fast prior to your cancer genetic blood test.
Is it necessary to undergo both cancer genetic counselling and testing during the same appointment?
That is your decision. Often people decide to undergo both counselling and genetic testing (if eligible) on the same day, during the same appointment. However, if you wish to defer your genetic test, we can make a follow-up appointment for you.
What will happen during my visit to the Cancer Genetics Service at St James’s Hospital?
Your doctor will refer you to the Cancer Genetics Service at St James’s Hospital. When we receive your referral (from your doctor), we may post a ‘Family History Questionnaire’ to you for your completion and return to us in advance of your appointment. During your appointment, a member of our team will confirm your family history/ family tree details with you and may ask about other medical conditions in your family (where known). If a cancer genetic alteration (gene fault) exists in your family, or there is a possibility of an inherited genetic alteration, our team will discuss the condition and outline the choices and options available to you.
It may be helpful for you to consider (and write down) any questions or concerns you have, prior to your appointment, so that we can address them on the day.
Information for males who carry BRCA gene alternation
Information for females who carry BRCA gene alternation
Information about ‘Lynch Syndrome’
What is ‘Diagnostic Cancer Genetic Testing’?
Diagnostic cancer genetic testing is helpful when an individual with cancer is unaware of whether a gene alteration is present within their family. A blood test can be taken either from you or an eligible family member (i.e. the blood test must be taken from someone with cancer), to identify any alteration (gene fault) in your DNA. If a cancer gene alteration exists, it may be responsible for causing cancer in you, and/ or in other family members.
What is ‘Predictive Cancer Genetic Testing’?
If a cancer gene alteration is identified in your family, you may opt to undergo a predictive cancer genetic test to determine if you carry your family’s alteration, using a blood sample taken from you.
When should I expect to receive my cancer genetic test results?
The below figures represent current average processing wait times;
During your appointment, you may opt to receive your results by phone, by letter or in person (at a subsequent clinic appointment).
Will my health insurance/life assurance policy or premium be affected if I have undergone genetic testing?
No. The Disability Act (2005), prohibits genetic testing details being used to discriminate in employment, mortgage or insurance matters. Even if an iInsurance company asks you, you are not obliged to discuss genetic testing with them.
Further guidelines concerning The Disability Act (2005) can be viewed here http://www.justice.ie/en/JELR/DisabilityAct05Guide.pdf/Files/DisabilityAct05Guide.pdf
Following your cancer genetics appointment
Regardless of whether you have undergone cancer genetic testing – the Cancer Genetics Team will provide you with screening advice on management of your cancer risk. You may opt to receive your results by telephone, by letter or by attending a follow-up appointment at the Cancer Genetics Service. We may discuss your cancer screening, surgical risk management, and/ or medical prevention of cancer.
If necessary, we may refer you to your referring doctor/ hospital for follow-up.
Appropriate cancer screening recommendations will be provided by letter to you and your referring doctor.
When should I expect to receive my cancer genetic test results?
The below figures represent current average processing wait times;
During your appointment, you may opt to receive your results by phone, by letter or in person (at a subsequent clinic appointment).
Should I inform my family about my cancer genetic testing or results?
We are passionate about cancer prevention and in general we encourage you to inform your family. This aspect will be discussed with you during your cancer genetic counselling consultation. Please bear in mind that cancer genetic test results are different from most other medical results which you will receive in your lifetime, as they may affect not only you, but your family members too. It is helpful for your close relatives to be made aware of your testing and results, as they too may decide to undergo cancer genetic testing.
When should I share cancer genetic testing information with other family members?
This will be discussed with you during your consultation. You may wish to inform your family prior to receiving your cancer genetic test results, or you may wish to inform them afterwards. We can guide you on how best to inform your family.
Who is at risk of having an altered cancer gene in my family?
If you carry an alteration in a cancer gene, your close relatives have up to a 50% risk of having the altered cancer gene too. The altered gene will likely have been present in your family for many generations, it is not something new within your family and you have inherited it either from your father or your mother. Carrying this altered gene means you have an increased risk of developing cancer in your lifetime.
Could my brothers & sisters (if any) also have an altered cancer gene?
If you carry an alteration in a cancer gene, your brothers and sisters have a 50% risk of having an altered cancer gene too. Each sibling needs to undergo genetic testing to determine whether they carry the altered cancer gene. Your siblings’ test results cannot confirm whether you also carry the altered cancer gene.
Could my children (If any) also have an altered cancer gene?
If you carry an alteration in a cancer gene, your children (or children you may have in future) have a 50% risk of having an altered cancer gene. If genetic testing of children is required, please contact the Cancer Genetics Service in Children's Health Ireland at Crumlin.
Could my extended family also have an altered cancer gene?
An altered cancer gene (if present) most likely will have been passed via either your father’s or mother’s side of your family. If this is the case, relatives on the affected side of your family may wish to consider cancer genetic testing. For example; if the cancer gene is present on your mother’s side of your family, then the uncles, aunts and cousins on your mother’s side of your family may carry the altered cancer gene.
Will my health insurance policy provider cover the cost of screening or surgical management?
Please consult your chosen health insurance provider to discuss your cover and associated costs.
What else can you do to protect yourself against cancer?
Some lifestyle factors are thought to reduce the risk of cancer. Maintaining your weight within normal limits may help prevent an increase in your cancer risk. Alcohol consumption and tobacco smoking also increase your cancer risk.
Support and advice to stop smoking is readily available from your doctor, the St James's Hospital Smoking Cessation Service and from the HSE at; https://www.quit.ie/.
It is recommended to frequently undertake physical exercise and maintain a balanced diet (with plenty of fruit and vegetable consumption) to assist in reducing any cancer risk. Further advice on healthy lifestyle choices can be found at the Irish Cancer Society website; https://www.cancer.ie/reduce-your-risk.
My name is Laura. I am 21 years old and in 2016 I decided to undergo predictive testing and learned that I am a carrier of the BRCA2 gene mutation.
My story began when relatives of mine in the UK found that they were carriers of the mutation, predisposing them to both breast and ovarian cancer. This prompted both of my great aunties (both nearly in their 90s!) to undergo testing to find out if they too carried a mutation. Because of this, my mother decided that she would also like to be tested and in 2015 she found out that she is a carrier of the BRCA2 mutation. This meant that my siblings and I had a 50% chance of inheriting the mutation from our mother.
It was when my mother decided to have risk reduction surgery that I began to really think about being tested myself. I felt worried about my mother, however, I was really impressed and inspired by her open mind. I attended all of her appointments in St James's Hospital with her and found all of the staff extremely patient and always willing to answer any question we had.
My mother thought about all the options she had, asked all the questions she wanted to and then came to a decision that was best for her. She helped me understand that this was best for her health. Looking at my mother’s journey made me realise that I also wanted to be tested.
I knew I was too young to enter into any screening programme, but decided if I knew I was a carrier, I could make some healthy living choices and think more about what I wanted to do in the future. It also meant that I could enter into a programme as soon as I was of age. To be honest, I was a bit floored. I knew what to expect whatever the test result, but it's still quite hard to prepare yourself for that kind of news.
My first worry was about my mother. I was afraid that she would blame herself for my carrying of a BRCA2 mutation. I called her after I received my results. She had hoped I wasn’t a carrier, but she had learned from her own journey that no one is at fault here.
I have decided that this was the right decision for me as I feel I am making life choices, I feel I am much more informed and I feel like I will be able to take the appropriate action for me when the time comes and I am ready.
I have learned from my mother that this is certainly something that is in no way a burden on my life, but merely a prompt to be screened more often and that knowledge is power. Carrying a BRCA mutation is not a cancer diagnosis, but rather a means of providing information so that I can live a longer, happier and healthier life.
Why have I been referred to the Cancer Genetic Department?
You have been referred to the Cancer Genetic Department at St James’s Hospital for assessment of your cancer family history and potential suitability for cancer genetic testing. It is likely that your doctor recommended your referral following your consultation and discussion with them.
We only accept referrals from doctors where the following guidelines are met, or if your doctor is concerned about your cancer family history.
We also accept the referral of a person not affected by cancer, where a cancer gene alteration has been identified within a family member. Such a referral should also be completed by your doctor.
What is Cancer Genetics?
Cancer is a genetic disease, which is caused by changes to genes that control the way our cells function (how they grow and divide). Certain gene changes can cause cells to evade normal growth controls and become ‘cancer’.
Hereditary cancer predisposition syndromes occasionally exist within families. During a cancer genetics consultation, information is provided about heritable cancer causing genes, how they are inherited, and how the resulting cancer risk can be managed.
Is cancer inherited?
Not all cancer is inherited but a percentage of many cancers are caused by heritable factors. At the Cancer Genetics Service, we can test for and offer advice on the management of some of this inheritance.
What are genes?
Genes are a special set of instructions inside the cells of our bodies that parents pass on to their children. Genes contain information, telling our bodies how to grow and work. Genes are also responsible for many things, like the colour of our eyes and the size of our feet
What is cancer genetic counselling?
Genetic counselling for cancer involves the provision of verbal and written information on specific cancer syndromes. Visual aids may be used to educate the patient on cancer risk and relevant risk-reduction strategies.
Who can benefit from cancer genetic counselling?
Anyone who has a concern about increased cancer risk in their family may benefit from genetic counselling. Some of this concern may be addressed by your general practioner (GP) who will help decide if a referral to a cancer genetics service is necessary.
How can cancer genetic counselling help me?
There are a number of ways in which you can be assisted by genetic counselling:
Can a cancer gene mutation ‘skip’ a generation?
No, A gene alteration does not skip a generation. Not all individuals who possess a cancer gene mutation will develop cancer. Although it may appear that the gene mutation has ‘skipped’ a generation, instead it has just not resulted in the person developing cancer.
What if I don’t want to have genetic testing?
Not everyone who is at risk of a faulty or altered cancer gene will decide to have genetic testing. Even if you do not wish to undergo testing, but feel you may be at risk of carrying an alteration in a cancer gene, you can still benefit from a genetic counselling appointment at St James’s Hospital. he information you receive may help you to make more informed decisions about genetic testing and/ or cancer screening and prevention.
What family details can assist during my cancer genetic appointment?
To provide you with the most accurate information, it is necessary to obtain details on your cancer family history. We will request that you complete a Family History Questionnaire in advance of your clinic appointment.
Please consider what family member details you can provide for as many close relatives as possible (alive and deceased) who have had cancer and those who have not had cancer, as these details will help us determine your cancer risk. Helpful details include; current ages, dates of birth & death and types of cancer, will all help. It will also help if you indicate whether any members of your family have attended genetic services in St James’s Hospital or elsewhere previously (if known). This family history questionnaire will be used to determine if you require a consultation in St James’s Hospital. Therefore, please be as accurate and thorough as possible when completing the form.
If I cannot fully complete the family history questionnaire, should I still return it to the Cancer Genetic Team?
Yes. We appreciate that you may not have all details of your family and their cancer history, but please complete the family history questionnaire as comprehensively as possible. The questionnaire will be used to determine if you require a consultation in St James’s Hospital.
Do I need to fast (not eat), prior to my cancer genetic blood test?
No, you do not need to fast prior to your cancer genetic blood test.
How much will my cancer genetic testing cost?
If you are eligible for genetic testing through the public health system no cost will apply to you.
What will happen when I visit the Cancer Genetic Centre at St James’s Hospital?
Your doctor will refer you to the Cancer Genetic Centre at St James’s Hospital, Dublin. When we receive your referral, we will send you a ‘Family History Questionnaire’ to complete and return to us, in advance of your appointment. During your appointment, a member of our team will confirm details of your family history/ family tree and may ask more medical conditions in your family. If a genetic condition exists in your family, or there is a possibility of an inherited condition, our team will discuss your condition and outline the choices and options available to you.
It may assist you to consider any questions or concerns you have, prior to your appointment. You may wish to note all your queries in advance, so that we can address them all during your appointment.
I do not have cancer, but a deceased relative who had cancer may have been suitable for genetic testing - should I still attend my appointment?
Yes. The Cancer Genetic Team may provide you with cancer screening advice and/ or identify another relative with cancer who may be suitable for genetic testing.
There is a BRCA1/2 gene mutation in my family - should male family members be tested?
Yes. Males can inherit the BRCA1/2 gene mutation and can have an increased cancer risk as a result. The children of male BRCA1/2 carriers also have a 50% risk of carrying the genetic mutation.
Can I undergo genetic testing at a private institution (hospital)?
Yes. You may wish to contact private hospitals that provide genetic testing. This is your choice.
What is Diagnostic Genetic Testing?
Diagnostic genetic testing is helpful when an individual with cancer is unaware of whether a gene alteration is present within their family. A blood test will either be taken from them, or from an eligible family member (i.e. the blood test must be taken from someone with cancer), to search for an alteration (gene fault) in their DNA. If present, the identified gene alteration may be responsible for causing their cancer and any cancers present in other family members.
What is Predictive Genetic Testing?
If a cancer gene alteration has been discovered in your family, you may be offered the option to undergo a predictive genetic test to see if you carry your family’s alteration. This will require a blood sample from you, which will be tested to determine if you carry the known cancer gene alteration within your family.
Is it necessary to undergo both cancer genetic counselling and testing at the same appointment?
That is your decision. Frequently, people decide to undergo both counselling and genetic testing (if eligible) on the same day, during the same appointment. However, if you wish to defer your genetic test, we can make a follow-up appointment.
When should I expect to receive my cancer genetic test results?
We are in the process of attempting to further streamline cancer genetic testing in Ireland but the figures quoted below are the current averages:
What else can you do to protect yourself against cancer?
Some lifestyle factors are thought to reduce the risk of cancer. Maintaining your weight within normal limits may help prevent an increase in your cancer risk. Alcohol consumption and tobacco smoking also increase your cancer risk.
Support and advice to stop smoking is readily available from your doctor, the St James's Hospital Smoking Cessation Service and from the HSE at; https://www.quit.ie/.
It is recommended to frequently undertake physical exercise and maintain a balanced diet (with plenty of fruit and vegetable consumption) to assist in reducing any cancer risk. Further advice on healthy lifestyle choices can be found at the Irish Cancer Society website; https://www.cancer.ie/reduce-your-risk.
Support
The Irish Cancer Society can refer you to a Peer Support Person (someone who has experienced the genetic testing process previously and will act as an added support for you). Please refer to the useful links for other groups which can provide you with other support capabilities. We welcome any support requests or feedback on your requirements.
Should I tell my family members about my genetic testing or results?
This will be discussed with you during the genetic counselling consultation but in general we encourage you to inform family members so as to optimally use the power of prevention. Please consider that genetic test results are different from most other medical results which you will receive in your lifetime, as they may affect not only you, but your family members also. It is useful for your close relatives to be made aware of your testing and results, as they too may decide to undergo testing.
When should I share information with other family members?
This will be discussed during your consultation. You may wish to inform your family before receiving your genetic test results or you may wish to inform them after you receive your results. We will help you share information with family members.
Who is at risk of having an altered gene in my family?
If you carry an alteration in a cancer gene, your close relatives have up to a 50% risk of having the altered cancer gene also. The altered gene will likely have been present in your family for many generations – it is not something new within your family, and you have inherited it either from your father or your mother. Carrying this altered gene means you have an increased risk of developing cancer in your lifetime.
Could my brothers & sisters (if any) also have an altered cancer gene?
If you carry an alteration in a cancer gene, your brothers and sisters have a 50% risk of having an altered cancer gene too. Each sibling needs to undergo genetic testing to determine whether they carry the altered cancer gene. Your siblings’ test results cannot confirm whether you also carry the altered cancer gene.
Could my children (If any) also have an altered cancer gene?
If you carry an alteration in a cancer gene, your children (or children you may have in future) have a 50% risk of having an altered cancer gene. If genetic testing of children is required, please contact the Cancer Genetics Service in Children's Health Ireland at Crumlin.
Could my extended family also have an altered cancer gene?
An altered cancer gene (if present) most likely will have been passed via either your father’s or mother’s side of your family. If this is the case, relatives on the affected side of your family may wish to consider cancer genetic testing. For example; if the cancer gene is present on your mother’s side of your family, then the uncles, aunts and cousins on your mother’s side of your family may carry the altered cancer gene.
What will happen after my appointment?
You may be given the option to receive your results by phone, by letter or by attending a further clinic appointment. You will receive a letter afterwards which will summarise what was discussed during your appointment, and we will also write to your referring doctor to outline your results and/ or screening advice.
Will my health insurance or life assurance policy or premium be affected if I have undergone genetic testing?
No. The Disability Act (2005) restricts the use of information from genetic testing for employment, mortgage and insurance discrimination. Even if an insurance company asks you, you are not obliged to discuss genetic testing with them.
Will my health insurance policy provider cover the cost of screening or surgical management?
Please consult your chosen health insurance provider to discuss your cover and associated costs.
Will genetic cancer screening increase my cancer risk?
As with all X-rays and mammograms, there is a small risk of radiation exposure to patients. However, most patients undergo few X-rays or mammograms during their lifetime; hence the overall exposure risk from radiation is low.
The BRCA gene mutation poses a greater cancer risk to you than any cancer risk from undergoing mammograms or X-rays. If you carry a BRCA gene mutation, your cancer risk is higher than the risk from having mammograms.
We hope that these links to other organisations and bodies which support cancer service users and their families prove useful for you.
Please note that the below organisations and their respective website content are not components of the Cancer Genetics Service at St James’s Hospital and we are not responsible for the content therein.
Peer Support
Irish Cancer Society
Phone: 1800 200 700
Website: http://www.cancer.ie/
Quitting Smoking Support
The HSE Quit Smoking Campaign
The QUIT campaign has been in place since 2011 and has proven to be one of the HSE’s most comprehensive and effective social marketing campaigns, prompting over 600,000 quit attempts since 2011 and providing support to many thousands of quitters.
Website: http://www.quit.ie
Phone: 1800 201 203
Email: support@quit.ie
Text: Freetext QUIT to 50100
Twitter: @HSEQuitTeam
Facebook: facebook.com/HSEQuit
ARC Cancer Support
ARC Cancer Support offers support, complementary therapies and counselling services to people with cancer and those who care for them.
Website: http://arccancersupport.ie/
Insurance Cover Support
Insurance Ireland
Insurance Ireland itself is not an insurer but is the representative body for insurance companies in Ireland. They provide useful and where possible, jargon free information about insurance for consumers and assist the public with any insurance queries or complaints they may have. Please note that the consumer information on their website represents a general guide to insurance.
Website: http://www.insuranceireland.eu/
The National Cancer Control Programme (NCCP)
The National Cancer Control programme was established in response to the second National Cancer Strategy ‘A Strategy for Cancer Control in Ireland 2006’. It was established in 2007 to ensure that all elements of cancer policy are delivered to the maximum possible extent. The NCCP continues to reorganise cancer services to achieve better outcomes for patients.
Website: https://www.hse.ie/eng/services/list/5/cancer/
The Cancer Genetics Team welcomes your feedback on any support organisations or resources which you consider may be beneficial for other service users and their families.
What is BlueEye?
BlueEye is a secure video call system which will allow you to attend your cancer genetics appointment via video call without travelling to St James’s Hospital. This consultation will be with your consultant, clinical nurse specialist or genetic counsellor.
The video/audio of this call will not be recorded or saved anywhere. Notes will be taken throughout the appointment and kept as a record; the same appointment structure as a visit in person. This method of consultation is compliant with current GDPR regulations.
Your Cancer Genetics Appointment
A. Prior to your appointment
You will require:
1. Updated contact information (mobile number, address and e-mail) to be provided to the cancer genetics service
2. A charged smartphone/computer/tablet with a built in camera, speaker and microphone
3. A good internet connection, preferably Wi-Fi
4. A quiet well lit place where you won't be disturbed and where you feel comfortable discussing your health information
5.A pen and paper to take notes
B. Connecting to your appointment
1. You will receive a text message/e-mail at the time of your appointment which will include:
2. Click into the link to access the BlueEye Direct Video platform.
3. You will be asked to “Allow” access to your camera and microphone. This is your consent to use this type of communication for your clinic consultation.
4. You may be asked to insert a pin for the call, this can be found at the bottom of the appointment text as a five-digit number.
In this example, it is 08536 (step 1 above). Once pin is entered, select “Enter Call”.
C. During your appointment
1. When connected you will see you and your healthcare professional. You are now ready to begin your appointment.
2. There is an option bar on the right hand side of the screen. Ensure your microphone is green and active during your appointment 
3. If the connection fails your healthcare professional will send you another message to re-connect. If that connection also fails, your healthcare professional will contact you by telephone.
4. There are other options on the right hand side of the screen in BlueEye that you should not need unless there is an issue connecting to the appointment:
This option can change microphone, camera and speakers settings
This is a text chat option between you and your healthcare professional connected to the call. You can also download documents relevant to your appointment, such as information sheets, through this option.
This is an option to allow for secure file transfer to your healthcare professional connected to the call. You can securely share any document which may assist your cancer genetics appointment, such as forms or previous results.
D. Disconnecting from your appointment
1. When your appointment is completed, you can disconnect the call by selecting the red phone option on the right hand side of the screen 
2. You will then be prompted to “End Call”. If you selected this option in error, you can choose to “Continue Call” which will allow you to re-join your appointment.
3. Once you confirm you wish to “End Call”, you will be notified that you have exited the call. If you exited the call in error, you can re-join your appointment using the original BlueEye link in your appointment text message. If this link is not functional, a new message will be sent by your healthcare professional to re-connect.
For more information about the cancer genetics service please visit: https://www.stjames.ie/services/hope/cancergeneticsservice/
If you have any issues or queries regarding your BlueEye video consultation, you can contact: Cancer Genetics Service 01 410 3759 / 01 410 3890
HOPe Directorate Building
