FAQ
Q: What is cancer of unknown primary?
A: This is a cancer that has spread from somewhere else in the body, but it’s not clear where in the body it started.
For most people who have cancer, the primary cancer is easy to identify. Doctors conduct tests to find where in the body the cancer started to grow. They may also do other tests to see if the cancer has spread.
When cancer is found in one or more secondary sites but the doctor can’t tell from the test results where the cancer began, the cancer may be called cancer of unknown primary or CUP.
Waiting for test results and for treatment to begin can be difficult. While some people feel overwhelmed by information, others want as much information as they can find. Making sure you understand enough about your illness, the treatment and its side effects will help you make your own decisions.
Q: Why can’t the primary cancer be found?
A: This may be for several reasons. The Cancer Council list the following reasons however I still struggle with not knowing how and why and where my cancer started from? What signs do I look for now to make sure it doesn’t reoccur?
• Your immune system may have destroyed the primary tumour, but not the secondary tumours (metastases).
• The secondary tumours may have grown and spread quickly, but the primary tumour is still too small to be seen on scans.
• The primary tumour may not be seen on x-rays or scans as it is hidden by secondaries that have grown close to it.
• The primary cancer may have spread throughout the body then disappeared. It is thought that primary tumours of the lining of the digestive system (from the mouth to the anus) may occasionally be passed out of the body through the bowel.
Q: Does it matter that the primary cancer can’t be found?
A: Finding the primary cancer helps doctors decide what treatment to recommend. If it can’t be found, the treatment path is less clear. However, doctors try to learn as much as they can about the spread of the cancer, the cells involved, your symptoms and medical history to help plan treatment.
Again, for me, even though I believed what the doctors were telling me about why they had chosen my particular course of treatment, it was still difficult to accept their reasons if no one could find where the little suckers had started from? How can you put fuel in a car if you can’t find the fuel tank??
Q: Will I need lots of tests?
A: Many people find they need several tests to try to find where the cancer started. The tests may take time and be tiring, particularly if you are feeling unwell. You may also feel frustrated if the tests don’t find the site of the primary cancer.
Every time I was referred for another test, I would pray that if there was something to find the doctors would find it and be able to cure it. I found it frustrating that after each test they would tell me they couldn’t find any sign of the cancer having been present and therefore another test would be ordered.
I felt like the cancer and I were playing a game of hide and seek and many times I wanted to scream “come out, come out, wherever you are!’. How could something so life threatening, invade my body, cause such an illness and leave no sign of where it had been or came from? I started to wonder, what are they missing? What tests are available overseas that aren’t available in Australia that could detect my CUP site?
Even if tests can’t find where the cancer started, your doctor will try to discover the type of cell the cancer developed from. This may give doctors a clue as to where the cancer started.