Please note: cancer risks vary depending on the exact Lynch Syndrome mutation you carry. Please consult your genetic counsellor who will be able to advise you about your specific situation based on your mutation and personal and family history.
There is currently no national screening programme for ovarian cancer, either for the general public or high risk groups, and surveillance isn’t routinely offered. This is because there is uncertainty about its reliability and effectiveness at catching ovarian cancer early. However, it may be possible to have regular CA125 blood tests and pelvic ultrasound scans as part of research trials. Talk to your GP to find out what is available locally.
Remember: cervical screening (the smear test) does not test for ovarian cancer.
- Risk-reducing surgery
If you are a woman with Lynch syndrome you have the option of having surgery to remove your ovaries and fallopian tubes (bilateral salpingo-oophorectomy), which will significantly reduce your risk of developing ovarian cancer. If you are pre-menopausal, this operation will put you into immediate menopause.
Having your ovaries and fallopian tubes removed will also reduce your risk of developing breast cancer, though the precise risk reduction is uncertain.
If you are pre-menopausal, this operation will put you into immediate menopause. There are significant risks associated with going through the menopause early, even if you take HRT, so speak to your medical team in detail about this risks and benefits of this surgery.
You can read more about early menopause here.
As Lynch syndrome also increases the risk of uterine cancer, it is recommended that women with Lynch syndrome have a hysterectomy to remove their womb in addition to their ovaries and fallopian tubes (see below).
Guidelines suggest Lynch syndrome women should consider these surgeries between the ages of 40-45.
There is not currently a screening programme for uterine cancer, as there is no proven and reliable method to catch uterine cancer in this way.
- Risk-reducing surgery
As Lynch Syndrome gives a woman an increased risk of uterine cancer as well as ovarian cancer, it is recommended that women with Lynch Syndrome have their womb (uterus) removed as well as their ovaries. This is called a hysterectomy and it is advised between the ages of 40-45. This surgery takes 6-8 weeks to recover from. After the surgery, you will no longer be able to get pregnant and you will not have any periods.
There are different types of hysterectomy so speak to your medical team about this in detail before going ahead.
People with Lynch syndrome will be advised to attend bowel screening from the age of 25. This will involve a colonoscopy, which is an examination using a flexible tube with a camera on the end, called an endoscope, to examine the bowel. Normally, you will be given a sedative so you are sleepy for the procedure. The aim of the colonoscopy is to check for any abnormalities and remove any growths (polyps) that are found on the wall of the bowel. These are then checked in a lab. Polyps are mostly benign, but some can become cancerous. Removing these growths before they become cancerous can prevent you from developing colorectal cancer.
This screening should take place every 18 months to 2 years. You may receive an automatic invitation for this screening, or you may have to chase this appointment yourself so it is worth setting yourself reminders.
Aspirin: there is evidence that regular doses of aspirin can help reduce the chances of cancer in people with Lynch syndrome. However, research isn’t conclusive on the best dosage of aspirin to take so we do not advise taking aspirin without consulting your medical team. Please speak to your GP. To find out about the CAPP3 trial into aspirin use and cancer risk, and who can be involved click here.
Gastric (stomach) cancer
There is no reliable screening available for stomach cancer. However, it is possible to screen for an infection called H. Pylori which is a risk factor for stomach cancer. Speak to your GP to find out how to access this in your area.
Remember: none of these options guarantees that you will not get cancer and there will always be a risk. You should continue to be aware of any changes in your body and visit your GP if you notice anything that concerns you. Speak to your medical team to understand more.
It’s also important to note that there are no right or wrong decisions. You should take the time to find out as much as possible and make the best decision for you and your family.
Be symptom aware
For details on the signs and symptoms of these cancers, see here:
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