Hey all ive always wondered this like community champion some hospital do bloods check yunour mskers nine are usually up snd down think they were on the rise last time however as my Co says they didn't reflect my scans my first scsn after diagnosis was November i goy diagnosed in june showed shrinkage im not seeing my oncologist till April first i was thinking surely she will then put me in dor scan late April early May xxxx
Thank you all for your replies. They were very helpful.
I saw the oncologist yesterday and he said that he could see that a CT scan had been ordered but suggested that I pop down to the reception to check. I did and it seems as though they'd missed booking it. Long story short, I got a cancellation on Monday afternoon. Also good news in that my bloods are improving and my tumour markers are down.
Thank you for your support.
Hi, yes, I had them 3 monthly after my diagnosis, was dx October 2015, had one in February which was NEAD then another in May then went 4-5 months until the next (probably at my request) then continued 6 monthly. My hospital doesn’t use markers, but wish they did for the reasons Nicky has said, that said appreciate can give false results. I keep saying I’m going to pay and have a Thermography scan done, simply because it doesn’t use any radiation or dye and I think it would be interesting to compare results...will have to save up! I also asked my Onc about having an MRI as opposed to a CT but said it doesn’t show up the lungs well enough, anyone else been told this? Kate x
Generally scans are given every 3 months especially at the start of a new treatment regime. However there are no hard and fast rules and sometimes it’s up to the patient as to how often they want them, as Kate has said. They are a stressful time! One way that oncologists can assess how a treatment is working is by measuring your Tumour Markers, which is done through an extra test when your bloods are taken but not all hospitals offer this and not all oncologists use them. If they are used they are a good indicator as the trend is followed, if they are going down the treatment is most likely working, if they go up it isn’t being as effective. However some patients TMs don’t show any changes so they are not relied upon but used with scans to determine any changes needed in treatment.
As you haven’t had a scan since October I would ask if your TMs are being tracked and decide if you want a scan or not. Or, if you’re not being offered one ask why not. You are entitled to ask! I used to have 3 monthly then 6 monthly scans but it was after an even bigger gap (everything had been stable for nearly 5 years at that point) that my liver mets were found and also my bone mets had gone from a couple to quite extensive. In the end it hasn’t made a difference to my treatment plan but I have way more bone mets than I would like. If I’d had a scan sooner I expect they could have been stopped in their tracks as since then they have been stable, I just have to know what is going on in my liver which is why I now get scanned every 3 months again.
Hi, I’m the opposite and am always wanting to stretch time out between scans! The actual scan doesn’t bother me physically but all the radiation and dye freaks me out a bit, that said Janette makes a very good point about her progression between 3 monthly scans. I have them 6 monthly but could have them every 3 if I wanted to, rightly or wrongly at the moment it’s about balance for me but if/when I get progression think I’ll be wanting 3 monthly, which my Onc has said will do. Lucky to have a good breast care nurse, that’s what let’s the service down at my hospital, one actually told me the secondary ladies were a problem! Hope everyone is keeping well and hands aren’t getting too sore from all the handwashing! Kate x
Hi, since mets dx 6 years ago I have scans every 3 months and this has never altered, I sometimes thought this was too close together but last year after my September scan showed the usual “stable” result my next scan in December showed it had progressed to my liver so i am now very glad that they are done so often because it just goes to show just how quickly things can change!
Hi. I was diagnosed last September. My hospital’s protocol is that you initially have a scan every three months and after two good results (hopefully) they would then class you as stable and switch to every 6 months. I do find my team are quite relaxed about ordering the scans though so I have had to be proactive and chase them to make sure they have been ordered. So I had my first ct scan pre diagnosis in September. Started treatment in October. Had my first post treatment scan in January and I’m due my second scan early April. I got a letter through after chasing for my first scan to be done in February so I had to ring up my consultant and ask for it to be brought forward to January. With my next scan they said they had ordered it but I hadn’t received a letter so I rang my BC nurse to check and turns out it hadn’t been ordered so she chased it for me. Basically I don’t relax until I have had it confirmed that someone can see on the IT system that it has been ordered. So in my experience you need to be proactive about it if you want them done in a timely manner! X
I was diagnosed at the beginning of last October with secondaries in my bone marrow, bones and lymph nodes. I had a second scan last July before my diagnosis but I've not had another one since. I've queried this a couple of times, because how can the oncologist know if the treatments working on shrinking my tumours. Last month the oncologist said he would schedule a scan in March, but I've heard nothing yet.
Everyone else I speak to seems to have scans every 3 months or so and I'm concerned. Does anyone have any thoughts?