Your experience regarding PET scans

I have been lucky enough to have had many PET scans and haven't had to pay for them as I am a patient at one of Australia's best cancer hospital. A PET scan is considered by this hospital as the 'gold standard' for the diagnosis of breast cancer metastases and for the monitoring of its progression. My first PET was when I was first diagnosed with Breast Cancer and I asked for a PET scan to see if it had spread. Doctors were not going to offer me a PET because they thought the cancer was contained in my breast. Alas, on insisting on the PET scan, it was discovered that I had multiple bone mets in and around my hips - that was 2.5 years ago. I was also given a PET scan every 3 months to see how well I was doing on the various treatments I have been on. I feel very fortunate to have been given access to PET scans for free. I have a friend who only gets CT scans and that doesn't seem very fair!

By the way, there is no medicare rebate for PET scans; nor is there a scheme for licensing PET machines to give a reduced fee (this occurs only in MRI's). So good on BCNA for pushing for a medicare number for PET scans. Although, some places may charge more or less for a PET scan so phoning ahead is a good idea.

In my case, I haven't been having PET scans lately to monitor my disease. I had my original, banked tumour DNA sequenced and they found out what the mutation was that was responsible for my cancer (AKT-1). Now, I have a blood test every 3 months and they look for circulating tumour DNA with this mutation. This test shows that the cancer is active again about 6 months ahead of a PET scan giving you and your doctor advanced warning to find and start a new treatement. So, the next thing we should be focussing on is a medicare rebate for circulating tumour DNA test. I imagine some women will still need to have a PET as their mutation/s may not be as easily detectable.