Frequency of CT scans

Hi lovely ladies

I have a question. How often do you have routine scans when in remission? I'm coming up to 6 months post chemo and my Oncologist has ordered a scan (no discussion or anything). The hospital just called me to book it.

The thing is, my CA125 is sitting at 14 and I've no symptoms. I feel really uncomfortable with having such a massive dose of radiation at this point, for obvious reasons. Just wondered what others experiences are?

Thanks in advance

Marian xx

29 Replies

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  • Hi Marian Sounds perfectly normal to me. You can refuse it and it's a personal choice but I'd rather have the scan to be on the safe side. When is your CA125 reading from? Kathy xx

  • Hi Kathy, thanks for the reply, my ca125 is from last Thursday. Xx

  • In that case I agree it does seem to be a bit unnecessary. Having said that some Drs don't like to rely on the CA125. Might be worth a call to your Onc's office to see why they feel it is necessary. xx

  • Thanks Kathy xx

  • Hi Marian, it might be an idea to see if it's because of having high dose of radiation. I have had them every 3 months but that's mainly because of having lots of treatment.

    I hope you can find out why it might be because they want to keep a good eye on you. I don't think it would hurt even put your mind at rest that everything is going well. Please keep us up dated to how you are doing. Take care Cindyxx

  • Thanks Cindy. I've just spoken to the Onc secretary and she says it's fine to postpone until after my holiday (in 10 days time), as it's just routine. I feel happier with this. I am really grateful that they care enough to keep a close eye, but my worry is that these CT scans with contrast deliver such a heavy dose of radiation that it makes me wonder how often we need to be exposed to it. Especially if the ca125 is low and no symptoms. Onc has already said that unless any symptoms there will be no treatment.

    Hope all is well with you?

    Marian xx

  • Hi Marian, that's good they are just keeping a good eye on you. Have a lovely holiday & hope you are really enjoy it. Take care Cindyxx

  • I had one at 12 months after treatment and then no scans until I had symptoms

    LA xx

  • thanks LA, that sounds sensible to me. I'm 5.5 months into first remission and I feel really good. CA125 went up a few points with a uti a couple of months ago, and then when the uti went, my ca125 went back down. That indicates to me that I'm sensitive to CA125. I.e: 868 at diagnosis and 8 after treatment/surgery/ treatment.

    Xx

  • PS: How are you doing? Xx

  • My CA is really sensitive too. I'm drinking from the poison chalice today 😢 Didn't want to but doing as I'm told lol

    Xx

  • Hi Marian, oncologists disagree(!) One of mine would not do it for 6 months post treatment, the other likes a base line but says 'you should have a scan if you want a scan'.

    Personally, I wanted one earlier, post treatment, but now would be quite happy to wait.

    Research is pretty inconclusive. Apart from the fact that too much radiation is not good(!)...sorry but I bet this is as clear as mud...I would follow your gut feeling....can you talk to your nurse? love Chris xx

  • Hi Chris.

    It is a dilemma isn't it. I've met them halfway and having it all done in 4 weeks time, after my holiday. That will make me 6.5 months post first line chemo. I think that's ok? Xx

  • sounds sensible to me(!) xxxx

  • Hi

    Yes had scan after surgery , at the end of chemo and then 6 months after Chemo. Next one due in January at end of Avastin maintenance . Having CA125 every 6 weeks at present. CA125 not always a good indicator so think I would need the reassurance of a scan . Good they are keeping a check on you without having to chase up but if you do not want it you can just let them know and cancel.

    Love and best wishes Kim x

  • I've met them halfway and having it all done in 4 weeks time, after my holiday. We are off to Florida with all the grand babies in 10 days and to get the scan in and get results in time would have been so anxiety inducing. That will make me 6.5 months post first line chemo. I think that's ok? I'm trying to be sensible but I suppose I admit to dreading a scan and what it might show.....Like all of us I need to get used to it I guess Xx

  • If I could do it all again, I would just forget about any scans until I started to feel unwell, as they cause so much anxiety and stress. Have a great holiday and enjoy being in remission. Sx

  • MH500, I just wanted to say that in my case it was important to have had a scan prior to 6 months post treatment. The reason for this is that if a reoccurrence happens before 6 months you are classified as chemo resistant. If you have a reoccurrence after 6 months you are classified as chemo sensitive. These designations often determine which clinical trials you might be eligible for. If the CT scan is taken after 6 months has passed you are by definition chemo sensitive even though you might have reoccurred before the 6 month time frame. It sounds like you are secure in feeling that there has not been a reoccurrence so perhaps waiting is fine, but I would take into account the classifications that are used for trials.

  • Hi Marian, I read some where today that the emmission from diesel and petrol fumes in traffic is worse than the radiation we receive from a ct scan. Mind boggling isnt it, all the best with your scan and I hope all will be fine

  • I was also told by a surgeon friend of mine that it was the same level of radiation you would get on a transatlantic flight. I have to say this made no sense to me at all, but it did make me feel a lot happier about having scans.

    Sx

  • Hi Marian Just to mention that they like to take a baseline scan post-treatment so that they can compare the next scan you have with this baseline. And then they'll compare the next scan you have with the one after that, and so on. (My cousin's a radiologist and this is what she told me.) Have a fab holiday! xxx Sundra

  • Hi Marian,

    I had one at 6 months out when I was feeling a bit niggly, so my gynaecologist requested it as a precaution. Then I had one at 10months because my CA125 had gone up, and I just had another one 2 weeks ago at around 12 months. I think I've had my share of radiation now!

    In your situation, I don't think I'd be fussed about having a CT unless I felt symptomatic or my CA125 had dramatically changed. I wouldn't have had one at 6months were it not for the fact that I was having a bit of a crisis.

    Anyway, you've put it off for a month, so well done!

    Vicki x

  • I had CT about a month after chemo finished which was for baseline and then had another about 18 months on when I had some pains- they were likely adhesions & one last year when referred to urologist along with a couple of USS... except for the first, on each occasion they've been in reaction to something raised at follow-up appointments and fortunately have been reassuring in finding nothing of concern! Sx

  • I was "microscopically clear" post-surgery so when I was routinely scheduled for a CT scan after 3 rounds of chemo, I refused it. "What do you expect to see?" I asked reasonably. "It won't show anything," the clinical nurse told me, though she still encouraged me to have it. When I had my next consultation with an oncolgist, I expected to be told off - instead he shrugged and said, "Some centres don't do one." At that point I realised I was on a conveyer belt and we are all given the same regime regardless of how relevant it actually is - for someone who has visible tumours which are hopefully shrinking, it makes sense to check if the chemo is doing its job; for me it made no sense at all. I also didn't do the post-chemo CT scan - again, what was it going to show? This time there wasn't a peep from the oncologist. I am a scientist by training and I'm very well aware of the cumulative effect of radiation - particularly from a full body scan like CT. Radiation exposure can CAUSE cancer - why else do technicians and dentists scurry out of the room while you're having an X-ray? My body, my choices.

  • I think we may all be different. I had a scan when chemo finished but that was because I am on a trial and they needed a point to start from. It's been three and a half years since I finished my chemo and I'm having a scan (when the appointment comes through) soon. This is just to be on the safe side. Nothing is expected to be wrong. Don't worry too much it sounds like you're doing really well. xx

  • I am in a trial. They require a scan every two months. Makes me ill and I hate it.

  • This January, I should be released to yearly visits, and scans. Right now, it has been every 4 months for my Dr visit with CA125 blood check, and 8 months between CT scans. I hope this info is helpful. DX Summer 2014, my last Chemo Dec. 31,2015. CA125 discovered @6,000; last count was a 9-and that's up from previous 7-8.... With good insurance, I have just gone along with "doctors orders", however, as insurance situation is about to change... well, will just have to see....

  • Never, since end of chemo 21 months ago. No symptoms, ca125 8 or 9. Once like you & not keen on CT unless necessary. Is an MRI a better option? Don’t know much about this or side effects

  • That’s Onco-not once

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