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Thread: Protocol for Follow Up?

  1. #1
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    Protocol for Follow Up?

    Just wondering about everyone's experience about follow up timelines, etc. Does it vary with the certain types of
    ovarian cancer, their stages, etc.? Or is there a universal follow up timeline for all ovarian cancer?

    In a nutshell, my oncologist told me ultrasounds once a year, blood tests twice a year. Does that sound right?

    In my particular case, mine was caught very early, surgery was June 6th. Took out left tube and ovary; no chemo or radiation needed.
    Went back to oncologist in July and October for verbal follow ups. Blood test in October. Will get blood test and my first
    ultrasound post surgery in late January.

    I asked about if I should get a full body scan or MRI of my surgical site. The oncologist said if my cancer were to come back,
    it would do so slowly over the course of ten years, so too many scans may do more harm than good. Not to borrow trouble but
    I want to stay ahead of this thing without being too over the top.

    Any thoughts?

  2. #2
    Moderator Top User jorola's Avatar
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    I am bumping your thread Dixie in hopes that we can generate some responses for you.

    I can tell you that a CT scan is approximately equal to that of 150 x-rays. This was confirmed to me by a doctor. Even my husband's onc has backed off on his lung scans stating that continuing scans every six months with only invite cancer from exposure from all the scans.

    Anyone else who have some experience with this to share with Dixie?
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    June 24 - tumor 1/3 the original size
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same

  3. #3
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    If anyone is interested, I have had two ultrasounds so far as follow up. Both came back good
    and I am more at peace of mind with them being once every six months. As my primary doctor told me,
    being surveilanced is key.

    I supposed if we need to be looked at in the least invasive/lesser dangerous way, I would go for the ultrasound.

    Ultimately, being seen and tracked is key for any protocol/any cancer.

  4. #4
    Moderator Top User jorola's Avatar
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    Thanks for sharing Dixie. This kind of info is helpful to all of us. Glad to hear it is bringing you peace of mind.
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    June 24 - tumor 1/3 the original size
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same

  5. #5
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    Something surprising happened today - I got a phone call from the oncologist saying that my latest blood work from two weeks ago showed my number spiked from 17 to 67. The nurse on the phone explained that this number could mean nothing or something. She said that the doctor wants the scan to make sure she is not missing anything.

    I'm getting a CT scan next Tuesday and my appointment for results is on 5/16/17

    To be perfectly honest, I am scared and very nervous. I was so hopeful of having escaped this thing from last year. But I'm trying to tell myself that
    being surveilanced is key. I'm trying to stay busy with work and not telling hardly anyone is making me crazy. But I don't want to worry my family
    until there may be something to worry about.

    Just wanted to share since this place is my safe place. Thank you

  6. #6
    Moderator Top User jorola's Avatar
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    So sorry to hear of your concerns Dixie!

    Definitely this is a safe place for you. Good on you for trying to keep busy. I know it must be so hard though.

    Will be thinking of you and please let us know what happens.

    Positive thoughts sent your way and take care,
    Jodie
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    June 24 - tumor 1/3 the original size
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same

  7. #7
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    Just to follow up - the CT scan with contrast revealed no cancer elsewhere in the body at this time.
    They checked everything in the pelvis and chest and other organs, etc.

    The oncologist told me that she does not know why the blood test number crept up, could be a lot of factors, but
    she did not want to leave anything to chance. I am relieved and will take this news about a clean scan.

    Just moving forward to enjoy each day, blood tests every three months and ultrasounds every six months.

    Aside: my insurance company denied the CT scan w/contrast twice due to their interpretation that the cancer market was not high enough.
    All of us - need a doctor and support to advocate for ourselves and care.

    Thank you.

  8. #8
    Moderator Top User jorola's Avatar
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    Awesome news about your results Dixie! May you continue to get good results.

    As for your aside - sorry to hear about that.
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    June 24 - tumor 1/3 the original size
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same

 

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