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Thread: Waiting for Initial Surgery

  1. #1
    Newbie New User
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    Oct 2019
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    Waiting for Initial Surgery

    Maybe this will get moved to the "worried" folder since I don't have an official diagnosis yet. But it's very ovarian cancer specific so I hope it gets to stay here...

    In August, I had a complex cyst discovered incidentally on ultrasound. CA-125 was low, and there was no blood flow to the solid component on color Doppler. My gynecologist scheduled me for surgery to remove it in December.

    Then a couple weeks ago, on a 6 week follow-up ultrasound, the cyst was shown to have grown (from 3.2 to 4.3 cm). The solid component inside it has also grown. CA-125 is still low, still no blood flow. I got referred to an oncologist.

    The oncologist said she's 90% sure it's not cancer (because of CA-125 and no blood flow), but she did move the surgery up to November 12. I had genetic testing (I have early breast cancer, early melanoma, prostate, and pancreatic cancer in my family) that I'm still waiting to hear back on. I'm having a CAT scan next week.

    My symptoms are: abdominal distension, left side pain (that's the side that the cyst is on), urinary urgency/frequency, some nausea, some digestive issues. In the past couple days, I've started to have right side pain, as well.

    I don't really know what my question is. I know that the Internet doesn't have a crystal ball and that no one can tell me if it's cancer or not and I just have to wait for the surgery. Maybe someone can give tips for reducing anxiety while waiting? I just wanted to tell my story to someone that might understand what it feels like to be in this spot! I'm having such a hard time focusing on work/family while I wait.

    Thanks for listening!! Apologies if I've left this in the wrong spot.

  2. #2
    Moderator Top User jorola's Avatar
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    May 2014
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    1,759
    Hi Sulusan,
    I have moved your post to the Worried forum as per our policies. However you will actually have more responses here as our Ovarian forum is usually very quiet.
    Anyone here can tell you the waiting is the worst. Until you have results back you feel like you are on the edge of a cliff with a small thin rope of hope to hang on to. However I think you are quite a few feet from the edge with a nice thick rope for backup. Although the oncologist could be wrong, they are most likely right in advising it is not cancer. Cysts can grown quickly and can be solid so no worries there and your CA-125 number is good (although that test cannot confirm cancer in of itself - only a biopsy can).
    Often what I recommend what people do is when they are anxiously waiting is to get busy doing something you love - crafts, visiting with those you love, lol even cleaning - whatever makes you the happiest. Why not spend time doing something you love the most when you are the most anxious? What makes you the happiest?
    Still if your anxiety becomes too much, please speak to your dr about it so they can give you something for it. No need to be making this worse on you either.
    Best of luck but I am sure you will be fine. Let us know how you do.
    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
    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
    Aug 2017 - and ditto
    Aug 2018 - 4 yrs NED - no evidence of disease
    Aug 2019 - 5 yrs NED and discharged from cancer clinic!!!!!

 

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