PET scans

Hello, I am really sorry that you have a recurrence. I’ve never had a PET scan, but my understanding is that they are very different to a CT scan. I assume that you are unable to have one privately? They are expensive if you don’t have private insurance. One other way of seeing if there are really tiny cancer cells in your system (before they are big enough to be detected by any scan) is by a CTDnA blood test. These are commonly known as liquid biopsies.  I have just come to the end of my time on a clinical trial called Trak-ER, which is being run by the Royal Marsden, but you can attend a participating UK hospital on their list. If you Google Royal Marsden and Track-ER trial, you will see the qualifying criteria, the hospital locations, and how the trial works. I was on it for 3.5 years and I am so grateful for it. I think recruitment ends on 31 March, but they will know more about that. If you are eligible, your oncologist will need to refer you, but you can contact the research team yourself first. I did that.  I think their details are on the Marsden trial website. I hope this is helpful. Your oncologists might be able to give you more information also. Xx

Thanks Cloudier for your helpful reply. I would consider having a PET scan privately if I knew for sure it was the right thing. I'm seeing my oncologist this week so I thought I'd try and get some advice from the community first - forewarned is forearmed etc. But i was very interested to hear about the Trak-ER trial, I'll have a look at that now. Thanks for the heads up! Xx

Hi

First of all I’m sorry you find yourself in this position. Having a positive biopsy that’s not been acted on doesn’t bear thinking about.

Funnily enough I had a PET scan just over a week ago - somewhat unexpectedly  

It’s really interesting science - and it is a lot different to a CT-only scan though it’s done in the same piece of equipment

They inject you with a radioactive glucose and you wait around an hour for it to be ‘uptaken’. They want you to be very calm and still in this period - not even reading or looking at an iPad

I believe the idea is that any cancer cells are very greedy for the glucose, so will absorb the radioactivity. So an hour later when they do the scan, any areas that have cancer would show up strongly. Other areas that routinely use the glucose like your heart or other organs would also show up but that would be expected

They are looking for the other bright areas of radioactivity which could indicate metastases of cancer 

It’s not an unpleasant experience (unless like me you’re a bit needle phobic)

I believe the reason they’re not done more frequently is 1 - they’re expensive and 2 - you get the equivalent of 8 years worth of background radiation in having the scan.

I agree with you, I’d rather be aware of what’s going on rather than be in the dark

Best wishes x

Hi SusanHB.  Thanks so much for your informative post, that was really interesting.  Firstly of course, I hope your results from the PET scan are 'good', whtever that means in terms of your cancer.  I was supposed to be getting the results of my CT scan tomorrow - but yesterday they cancelled the appointment, no explanation given.  They wanted to re-arrange for next week but it's half term and I'm going to see the grandchildren and I'm not changing that.  So now I'm in limbo again and the paranoia levels are rising.  Probably it's the expense that's the problem, or it's not 'worth it' for some (more ominous) reason.  I'll keep pushing, and I wish you luck too xx

I have had a couple of PET-CT scans. As one of the other posters says, you are injected with some radioactive material, then sit for an hour for it to circulate. You have to fast for several hours before. The scan takes a lot longer than an ordinary CT scan as it literally inches along your body. The machine is a similar size to a standard CT. Cancer activity lights up on the scan so they can differentiate between active cancer and other things that look similar on a standard CT. When I needed one the first time there were delays and I looked into private provision. I remember they cost around £1800 in 2022. My NHS appointment came through just as I had started to research it, so I didn’t go ahead with a private scan. 

Thankyou Coddfish that's very interesting.  Could I ask, have the PET scans been useful/important in terms of your treatment?  Do you think it's made a difference?  I just don't know how far to push it, or whether to consider going privately. xx

I was diagnosed with early stage TNBC in Feb 22 and had surgery followed by chemo. Clear margins in surgery, no lymph node involvement. I thought I would finish the chemo, have radiotherapy and that would be the end of it. The chemo put me in hospital with dreadful abdominal pain. They thought it was infected diverticulitis (it was) but they gave me a CT scan to confirm. The CT scan produced several unexpected findings of which the most worrying was what looked like cancer in my liver. Because the cancer had likely travelled by blood prior to surgery they wanted to be sure the other findings were benign and also check it wasn’t in my brain or bones (these hadn’t been in the scope of the CT scan). I therefore had a full body PET-CT plus an MRI of the liver. It did confirm the cancer was limited to my liver. 

At this point it was unclear whether it was a secondary or a new primary in my liver.  The first action was to biopsy it and then remove it through ablation in the same procedure. The biopsy confirmed it was a secondary. A CT scan and MRI showed the ablation hadn’t worked and I had further spread in my liver. The decision was then to start me on immunotherapy and more chemo and they wanted another PET-CT as a baseline. Again the scan confirmed it was only in my liver. A long story of other issues and multiple CT and MRI scans later, my liver has cleared and stayed clear, so I haven’t had another PET-CT since.