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Thread: New here... crossover from pancreas forum

  1. #1
    Senior User
    Join Date
    Apr 2014

    New here... crossover from pancreas forum

    Hi. I wish I wasn't posting here, but... as way of introduction, I'm an American living near Paris (for many years), mom to 2 daughters ( almost 20 and 18 ).

    I am coming up on my 3year (next week) anniversary of distal pancreatectomy to remove a large (11cm) mucinous cyst discovered by chance. The cyst included a 3mm adenocarcinoma tumor, and was considered borderline stage 1. I did 6 months of gemzar chemo after surgery as added insurance.

    Well, a bit before the holidays, I started feeling odd intermittant pressure in my pelvis (like menstrual cramps, but at 55 I'm fully menopaused, plus no bleeding or unusual discharge). I ended up going to see my GYN, who did an ultrasound and sent me for an MRI on Friday. I have a 10cm cyst which looks suspiciously like the one I had on my pancreas. I see my oncologist Wednesday morning (he's squeezing me in between 2 patients), and he said I shouldn't be too worried, but will need surgery quickly...

    For info, I got my markers back this morning - CA125 at 47 , CEA normal at 0.6 , CA 19-9 up to 137. Needless to say I'm not a happy camper.

    Anyway, I'll be back when I have more info, but I just wanted to introduce myself. Any words of wisdom would be welcome!

    Thanks, Debbie

  2. #2
    Moderator Top User jorola's Avatar
    Join Date
    May 2014
    Hello Debbie

    First off I am so sorry I missed your post until now. My deepest apologies.

    I am also sorry you are having to post over here as well. Now sounds like you don't have a confirmed diagnosis but a high CA125; am I correct? Now i am quoting the Mayo Clinic here hoping to ease your mind a bit if I am understanding correctly.

    "A CA 125 test isn't accurate enough to use for ovarian cancer screening in all women because many noncancerous conditions can increase the CA 125 level. Many different conditions can cause an increase in CA 125, including normal conditions, such as menstruation, and noncancerous conditions, such as uterine fibroids."

    So hope that helps. If you don't have a confirmed diagnosis I will move this thread into the forum as per norm but I'll wait for your confirmation first.

    Best of luck and keep us posted.
    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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