Tell me more about ET
Are there any other names for ET?
ET is also sometimes referred to as primary thrombocythaemia.
Am I going to die early?
You should have a normal life expectancy. Now that your ET has been diagnosed, it can be properly managed by your doctor to reduce the risk of life-threatening complications.
How long will I have ET?
ET is a chronic disorder. This means that you will have it for the rest of your life. Your treatment may continue for several years and you will need to see your doctor regularly for check-ups and blood tests. If you have any problems, or notice any new symptoms in between your appointments, let your nurse or doctor know as soon as possible.
Is ET a type of cancer?
No, ET is not a type of cancer.
Are people with ET more likely to get cancer?
In the long term, a small number of people with ET may go on to develop a type of blood cancer known as leukaemia. There is also a chance of developing a problem with the bone marrow known as myelofibrosis.
Myelofibrosis is an illness where the normal bone marrow is gradually replaced by fibrous tissue. This means that eventually the body cannot make enough blood cells and so anaemia (lack of red blood cells) gradually develops. About one in five people who develop myelofibrosis will go on to develop leukaemia.
The chance of somebody with ET going on to develop myelofibrosis or leukaemia varies according to different research. In one study, the chance of developing myleofibrosis 10 years after diagnosis was about 8.3%. However, another larger study found that the rate of development of bone marrow changes or leukaemia was about 1%.
Your doctor or nurse will be able to give you more information about this subject, so please speak to them if you are concerned.
I am thinking about having children; will ET affect my fertility?
Many of the drug treatments for ET are harmful both to sperm and to a foetus. If you want to start a family, talk to your doctor about the best options for you.
For women, the fact that you have ET does not automatically mean you will not have a successful pregnancy. However, pregnancy itself is associated with an increased risk of clotting, and this risk may be magnified by your existing risk.
ET may make miscarriage more likely, and cause growth problems for the baby later on in pregnancy. It's thought these complications occur because the blood flow to the placenta is reduced, either by clots or by clumps of platelets. Your doctor will be able to advise you further on this and it is likely that you will be carefully monitored during your pregnancy.
Will having ET affect any other illnesses that I have?
This is something that you must discuss with your doctor. It is very important that if you see a doctor or surgeon, you tell them that you have ET and are taking a treatment for it so that they can discuss the best plans with you.
What routine tests might be done?
Your doctor will take a full medical history and carry out a physical examination and simple blood tests. Your doctor will ask you to have blood tests at regular intervals to check that your medicine is working effectively.
Your doctor may use the following tests or examinations to diagnose or manage your condition:
- Full blood count (blood test)
- Chest x-ray
- Ultrasound scan
- Bone marrow biopsy
Your doctor may also suggest a camera test called an endoscopy or colonoscopy, to examine for blood loss from your stomach or intestines.