PET scans

2 replies
285 subscribers
66 views

I had lobular BC in 2010 and now I have a recurrence which was diagnosed last August when I was told that a positive biopsy from 2023 hadn't been followed up (even though I'd tried to chase it up) - the 'new' cancer had been growing for over 2 years. So in Sept. I had a mastectomy + WLE + full lymph node clearance. 22 out of 23 lymph nodes were positive for cancer and there was a 5cm grade 3 tumour in the breast. The oncologists I have seen (2 NHS and one private) were divided over the benefits of chemo and eventually I declined it because of my age. The private oncologist said I should have a PET scan but all I've had up to now is two normal CT scans (inc. one last week which I thought was a PET scan but it wasn't). Apparently there are no facilities for a PET scan in our part of Wales, I would have to go to England. I've had some RadioT and I'm on hormone therapy (Letrozole).

I'm pretty worried. I know the extent of the lymph node involvement is not good and all the oncologists have said 'there are probably cancer cells in your system', but I don't think they want to tell me how bad it is, in fact I'm beginning to think they don't even want to know themselves. My understanding is that a PET scan shows where the cancer is (or shows cancer cells) in more detail than a normal CT scan. But if they don't know where it is, how can they treat it? And even if it's untreatable, I'd actually prefer to know that, the uncertainty is awful.

Does anyone out there have any experience of PET scans? Should I push for it or am I just being a nuisance?

Cloudier 2 hours ago

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

Mac1sailing 2 hours ago in reply to Cloudier

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

More from this forum

PET scans