Ugh, please help, again!

Adam26
Adam26 Member Posts: 125
in Anal Cancer #1

Hey guys,

So we are waiting for next Tuesday to get the MRI and biopsy results. Our head nurse who knows my mum gets anxious rung today to confirm a CT scan in July. 

Apparently, this is norma as mum had a CT scan last July and you supposedly have them every year. However, the oncologist said she'd have the CT in October, which would be a year post-treatment. So what's going on? Is this normal or does she know something we don't, like a re-staging? If they are every year and she's not lying about it being routine we're of course going to be much happier!

What's more, she didn't say anything about the results which has set alarm bells off for mum as she thinks surely she would be giving good news if she had it. Hate this.

Comments

  • eihtak
    eihtak Member Posts: 1,473 Member
    #2
    Adam26....

    Hi,

    It seems there is a lot of difference in everyones follow-up scan schedule. For some its every 6 months, some every year, and others more or even less often????? My original follow-up scan (over 4yrs ago) was set for a CT scan at approximately 3months post treatment and a PET scan at 1year post treatment. Since then it has been off due to other health concerns but roughly every 6months for the first 3 years and then scheduled for once a year. I have recently had a recurrance in my lung so will now change again!

    Often the schedule of scans is based on insurance coverage as well as individual doctors preference and seems to vary by your location. Some states/countries have different protocols than others.

    In your case, since the doctor mentioned October, I would just call to verify what he/she actually recommends. One year scans do seem to be routine in most areas as there is also a concern of too much scanning (as in 3 or 6 months) causing over radiation risks and contributing to secondary cancers. My guess is that the nurse was not holding back from giving you any bad news and was just doing the job of confirming appointments at the time she called.

    Best of luck to you both.....the whole process can be very frustrating at times, we are all there in the same boat!

    katheryn

  • pializ
    pializ Member Posts: 508 Member
    #3
    eihtak said:

    Adam26....

    Hi,

    It seems there is a lot of difference in everyones follow-up scan schedule. For some its every 6 months, some every year, and others more or even less often????? My original follow-up scan (over 4yrs ago) was set for a CT scan at approximately 3months post treatment and a PET scan at 1year post treatment. Since then it has been off due to other health concerns but roughly every 6months for the first 3 years and then scheduled for once a year. I have recently had a recurrance in my lung so will now change again!

    Often the schedule of scans is based on insurance coverage as well as individual doctors preference and seems to vary by your location. Some states/countries have different protocols than others.

    In your case, since the doctor mentioned October, I would just call to verify what he/she actually recommends. One year scans do seem to be routine in most areas as there is also a concern of too much scanning (as in 3 or 6 months) causing over radiation risks and contributing to secondary cancers. My guess is that the nurse was not holding back from giving you any bad news and was just doing the job of confirming appointments at the time she called.

    Best of luck to you both.....the whole process can be very frustrating at times, we are all there in the same boat!

    katheryn

    Adam

    Hi there,

    my first ct scan prior to treatment was in November 2012. My next one was scheduled for September 2013, then Sepember 2014. I had another in May this year due to a scare. when I had the scare they did EUA, MRI & CT. Mostly my scans have been out of sync with my oncologist appointments. My next appointment in August is in a mixed clinic where I will see a colorectal surgeon and an oncologist, not necessarily my regular guys. I wonder how that will pan out? Follow up after treatment is variable to say the least

    I know you & your Mum are anxious at the moment, but the differing scan date doesn't necessarily indicate anything. it's easy (as I know) to get it wrong when trying to make sense of the way they work. If you are concerned (I know you are), just give the oncologist's secretary a ring and ask her/him to contact you. I don't think that is unreasonable.

    Kind regards

    Liz

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