What is tumour screening?
We have given you this information leaflet because you are currently being investigated for, or have been diagnosed with, Endometrial cancer (also known as womb cancer).
A small proportion of Endometrial (womb) cancers are caused by a rare genetic condition called Lynch Syndrome. The NHS now recommend all patients with womb cancer are routinely tested for Lynch Syndrome when a sample from the cancer is examined, this is called immunohistochemistry (IHC).
If the tissue sample of the tumour does not show a cancer or it is a different type of cancer then this specific tumour screening test (IHC) will not be carried out.
What is Lynch syndrome?
Lynch syndrome is caused by inherited or genetic conditions (passed down in families). The Lynch syndrome genes protect us against cancer by repairing DNA mistakes that can occur when our cells are made. These specific genes are inherited from our parents, you receive half from each parent and any biological children you have will inherit half of their genes from you.
Most women with Lynch syndrome are well, but a women living with Lynch syndrome have a higher chance of developing bowel and endometrial (womb) cancer. Both men and women with Lynch syndrome have a slight increased risk of developing cancers in other parts of the body than people in the general population.
The diagram below shows if we test 100 womb cancers only a small number of cases are actually diagnosed with Lynch Syndrome.
What are the benefits of testing for Lynch syndrome?
The benefits of detecting Lynch Syndrome include personalised support and information such as:
- Screening/surveillance-including regular bowel screening
- Treatment-use of aspirin
- Family planning/fertility advice
- Family tracing/testing
- Preventative surgery
- Lifestyle advice
Your tumour screening results
The results of the initial tumour-screening test (IHC) will take several weeks, these will be sent to your Gynaecology consultant who will contact you with the results.
If an Endometrial cancer is diagnosed and your tumour-screening test (IHC) is normal further genetic tests are not required unless there is a strong family history of cancer. The majority of endometrial cancers are not hereditary and can be caused due to older age, an unhealthy lifestyle or being overweight.
If there are abnormalities found in your tumour-screening, this could suggest possible Lynch syndrome and further testing with a genetic blood (germline) test will be recommended. Another appointment will be arranged to discuss this with you in more detail.
What happens if I attend clinic to discuss genetic testing?
We will discuss Lynch syndrome in more detail and provide information on genetic testing and the possible results. We will discuss the benefits associated with being tested for Lynch Syndrome for you and your family. We will also discuss any history of cancer in your family. You will be offered a genetic blood test. Having genetic testing is optional and your decision will not affect the standard of care you receive.
More Information
If you would like more information about your screening test or Lynch Syndrome, you can contact your local Gynaecology team; alternatively, the following websites have more detailed information:
https://rmpartners.nhs.uk/lynch-syndrome-early-diagnosis-pathway/patient-information/
Lynch Syndrome | The Eve Appeal
Confidentiality
‘The Trust’s vision is to keep your information safe in our hands.’ We promise to use your information fairly and legally, and in-line with local and national policies. You have a right to understand how your information is used and you can request a copy of the information we hold about you at any time.
For further information on confidentiality contact the Information Governance Team:
Information.Governance@ncic.nhs.uk | 01228 603961
Feedback
We appreciate and encourage feedback, which helps us to improve our services. If you have any comments, compliments or concerns to make about your care, please contact the Patient, Advice & Liaison Service:
pals@ncic.nhs.uk | 01228 814008 or 01946 523818
If you would like to raise a complaint regarding your care, please contact the Complaints Department:
complaints@ncic.nhs.uk | 01228 936302