Your experience regarding PET scans

Giovanna_BCNA

Hello everyone

Breast Cancer Network Australia has the opportunity to provide some information towards a new medicare rebate for PET scans (currently there is no rebate).  We are looking for anyone within our online community who would like to provide a quote about their experience of having a PET scan, which we can include in our submission.  If you are interested in providing a quote please email the policy team at  policy@bcna.org.au

Thanks Giovanna

Sister

@Giovanna_BCNA I can't comment on cost as I don't know if I've ever had one and if I have it was covered but I'm curious.  At the risk of sounding a dill, is it a PET scan that is done when they put the radioactive blue dye in before surgery?  

Brenda5

I had 2 CT's and a bone scan and didn't have to pay anything at all.

Giovanna_BCNA

Hello @Sister,
No problems, the procedure you are referring to is the Sentinel node biopsy and injection pre surgery.  Prior to a PET scan, you have an injection of a small amount of a ‘positron-emitting’ radioactive material (called a radiopharmaceutical), images are then taken of the body using the PET scanner.

wendy55

Hi @Giovanna_BCNA, I have had a whole of body bone scan at no cost to me,all other scans etc no cost, I did speak with a health professional re a pet scan versus a whole of body bone scan I was told that they are the same but a pet scan is the very expensive option - each scan I always have the contrast injection - the one that makes you feel the need to pee!!!
So perhaps you could or someone could tell me the difference between a pet scan and a whole of body bone scan, 
thanks
wendy55

kmakm

How is a PET scan different from a CT scan?

Giovanna_BCNA

Great question @wendy55, @kmakm

A PET scan uses low-dose radioactive glucose (a type of sugar) to measure the activity of cells in different parts of the body. It may help to find out whether a tumour is growing and whether it is cancerous (malignant) or non-cancerous (benign).
https://www.macmillan.org.uk/information-and-support/diagnosing/how-cancers-are-diagnosed/tests-and-scans/pet-scan.html

A CT scan takes a series of x-rays, which build up a three-dimensional picture of the inside of the body. The scan takes 10–30 minutes and is painless. It uses a small amount of radiation.
https://www.macmillan.org.uk/information-and-support/diagnosing/how-cancers-are-diagnosed/tests-and-scans/ct-scan.html

kmakm

Thank you @Giovanna_BCNA!

[Deleted User]

I have had a few scans where they injected dye into my arm with a very fine needle and then had to come back a few hours later, but I asked for the second one to be bulk billed and the first one was automatically bulk billed. Both were to test for metastatic cancer. They might have been bone scans as they were of my whole body. I’m not sure about PET scans. My doctors might have avoided them because they were so expensive. I’ve had a lot of CT scans. 

Kellee

Hi @Giovanna_BCNA I am booked in for a PET Scan this Monday at the hospital. I was told all I needed was my Medicare card.

Twiggyjumps

Last year I had 2 PET scans within 6 month period. One for the sentinel node biopsy and to see the active cancer pre chemo, and the second was for post chemo to see how the cancer was resolved by the chemo.  The dye was used also.  Each time the dye was to be done prior to the PET scan, they made me wait an hour before having the scan so luckily I took in my hot water bottle to keep myself warm whilst waiting as I was asked to lay down in a small room that was cold.  So I’d keep myself warm and have a snooze.  If I recall, the scan took about 30 minutes so I’d ask for a small towel to cover my eyes to relax and I’d recite a few dressage tests that I had ridden on my horses at competitions. Each scan cost me $800 out of pocket.  But I wanted whatever I could afford through fear.  Fear is the driver! 

I discovered later by chance that I didn’t have to go to the particular imaging department on the referral.  The referral can be used anywhere.  So I shop around and find that the imaging places that have applied for and paid a full Medicare rebate license or whatever it’s called, bulk bill patients. Those imaging providers who’ve only partial license, pass on the Gap to the patient.  That’s my experience to date.

kmakm

@Twiggyjumps Outrageous that you weren't told up front.

Twiggyjumps

Yes I was naive.  And I also still find that when I receive an imaging referral from a Dr, the reception want to book me in to the one on the slip.  I just say I’ll do it as I want to shop around and get bulk billed thanks and they get a little like ‘Ohhh sure?’ Yep why pay extra - if it can wait a few more days then save!

Lisa1407

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.

Ellamary98

I had a PET scan at the time of my original diagnosis five years ago. It cost us almost $1000- a huge expense for us at the time, which added considerably to my feelings of guilt around family upheaval.It was recommended by my oncologist, partly because the hospital`s bone scan equipment was out of action. The stress and fear of what that test would unveil is sharp in my memory and I battled tears through the entire process. As a private patient, I copped huge expense at each step of my treatment, except for the chemo. It took my family years to recover financially. Reducing the financial burden of cancer testing and treatment would have such an enormous impact on the mental health and well being of patients and their families. Now I am undergoing treatment again, the discovery that some of the scans and tests are now bulk billed has significantly reduced our stress, Thank you, BCNA for your valuable advocacy in this area.

Hankster

I am a private patient and have had to pay gaps for all of my scans.  Every time it costs me about $800 out of pocket.  I know I am lucky to have choice but I am self funded disability pension through my super so still have a limited income.  I am considered able to pay because I don't have a health card.  It is stressful enough having the scans and waiting for results only to have to come up with hundreds of dollars to pay for them