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Thread: Worried and scared - ? ovarian cancer

  1. #1
    Regular User
    Join Date
    May 2016

    Worried and scared - ? ovarian cancer

    Hello, this is my first post to this forum. On April 18, I went to bed and began having pain in my lower pelvic region. This pain spread throughout my whole abdominal area and became excruciating. My husband ending up taking me to the ER. I should mention that I have at least a ten year history of ovarian cysts that have been monitored. I thought quite honestly that I had a bowel obstruction as I have been constipated for quite some time now due to a lower carb diet. They did end up finding that I was indeed very constipated, but also found through a transvaginal US that my one cyst on my left side had grown to 11x7 cm from 3.8 the previous year. Fast forward to a few days later and I received a call that I was booked to see a gyne oncologist as my CA125 was 618. I have since seen the dr and am now booked for surgery on May 19. My world has been turned upside down. I just turned 50 in March and am post menopausal. I have had to take time off of work as I am not in my right frame of mind to work. I need some sort of hope that I will be able to get through this. Is there anyone here who has been in similar situation that can offer some support? I should mention they also found some free fluid in my abdomen. Thanks for taking time out to read this

  2. #2
    I read your post and I wanted to reach out to you and let you this board is great support.

    The fact that your doctors are moving along and taking action works in your favor. As others have said on here, the surgery and biopsy provide answers
    that will help you move forward.

    At this current point in time, I am kind of going through a similar situation - history of ovarian cysts for years, went to ER in April with awful stomach pain that I thought was IBS, yet they found a mass
    that was big. Still waiting to get into the oncologist which I insisted on seeing. While, my CA 125 test result was fine, I still don't trust it until its out of me. I am pleased that you are getting results relatively quickly.

    The period between that initial ER visit and the actual diagnosis/biopsy is the worst uncertain time of your life. When my mother was diagnosed with brain cancer, even though the diagnosis was horrible for us, it was the not knowing and not having a plan that was the worst thing. Knowing is better than not knowing.

    You will get through this, day by day. Everyone copes differently and there is no right formula that works on everyone. Please try to establish some sort of routine for yourself now and stick to it. Even if you cannot work (my therapist told me the worst thing for me to do was skip work as the "normalcy" was key until I get answers), try to do daily walks or do something active for yourself. Or spend time with others or take a drive somewhere awesome.

    Keep us posted and write us here anytime. Xo

  3. #3
    Regular User
    Join Date
    May 2016
    Thank you so much for your thoughtful reply. You are right, waiting is the absolute worst. I hope that you get in very soon and that your outcome is favourable. As for work, I have struggled with whether to work or not. My work is stressful and I felt that being away for a while might help to keep the stress levels down but yes, trying to fill my day is not easy. I take naps which help, as I do feel tired. I just want this out. My mind is telling me to be prepared for the worst but I must try with everything I have to remain hopeful. Thank you again for your kind words

  4. #4
    Newbie New User
    Join Date
    Aug 2014
    cangirl, I am sorry you are going through this. The CA 125 can be positive in endometriosis and sometimes negative when people have cancer, so try not to worry.
    I sought out this site b/c I recently had an ultrasound and I could see myself that something was going on b/c she measured a huge ovary on one side. It was probably 10 times the size of my uterus and other ovary. I am also post menopausal and so worried. I am trying not to let my thoughts go to the worst but sometimes they do.
    Did you have PCOS? What does your doctor say? Sometimes cysts are just cysts. Think positive until you know otherwise. I am repeating this to myself as I am waiting......

  5. #5
    Can girl, best of luck with the surgery. As Dixie said, the CA-125 level does not mean it's cancer. Lots of things can drive that up, because it's really a marker for inflammation, and with a cyst that big in there there's bound to be inflammation. I hope your surgery will go smoothly (and you can expect it will!) and that you'll get good news afterwards!
    Diagnosed with stage 2c papillary serous cystadenoma borderline malignancy of the ovary in 2009. Hysterectomy, omenectomy, appendectomy, debulking.
    - 2010 - laparoscopy showed inoperable recurrence, so started chemo.
    - Frontline chemo - carboplatin and cyclophosphamide, six cycles
    - Additional chemo regimens: Avastin - ten cycles; Weekly Topotecan - 4 cycles.
    - Spring 2012 developed pleural nodules. Topotecan plus Avastin - 1year.
    - April, 2014, had surgery to remove Aspergillus infection from right lung.
    - September, 2015, started on Megace because my tumors are PR positive. Stopped Megace after three months.
    - September, 2016, hospitalized for shortness of breath and back pain.
    - September, 2016, respiratory failure reversed with prednisone. Maintaining on 50 mg Prednisone per day and supplemental O2.
    - October, 2016 left hospital with no supplemental oxygen. Feeling great! Will start tapering off the prednisone Oct. 10.

  6. #6
    Regular User
    Join Date
    May 2016
    Deb 27, thank you for your reply. I am sorry to hear that you are going through a similar situation. When are you going to have some answers? Are you having surgery? A gynaecologist a few years ago suggested that I probably did have endometriosis, but they wouldn't know for sure unless I had surgery. Well, I've not had surgery yet, until tomorrow, that is. I have not had a diagnosis of PCOS at any time in the past. You are right, it is very hard to not let your thoughts get the best of you, but essential in order to keep our sanity. I just want to get this over with and tomorrow is the day. I wish you all the best, please keep me posted.
    Serous2c, thank you for your encouragement and kind words. It sounds like you have been through quite a bit yourself and here you are supporting others. I will check in post surgery to update.

  7. #7
    Can girl - keeping you in my thoughts and sending good karma your way. Will be looking for your updated after surgery. Best of luck.

  8. #8
    Deb 27 - please keep us updated as well.

  9. #9
    Regular User
    Join Date
    May 2016
    Well I am sorry to say that my surgery was cancelled. I arrived at hospital, got registered and then sat there with I.V. in my arm waiting for 4 hours. After my surgery time had come and went by an hour, I walked up to the nursing station to enquire about the wait. A nurse called someone and then just told me that yes, she was behind but no other details were available. So I sat there for another hour getting very anxious. The dr. finally showed up and said that she had cancelled my surgery 2 hours ago but obviously no one got the message. She was stuck in a complicated surgery that took hours longer than anticipated. I was given instructions to call the office this morning with a new surgery date. It is now booked for June 1 with a different dr. I wouldn't even be able to get in with the same dr. until at least June 15. To say that I am upset and discouraged would be an understatement. But unfortunately there is nothing I can do but wait. I just continue to pray that it is not too late

  10. #10
    Moderator Top User jorola's Avatar
    Join Date
    May 2014
    Sorry to hear of your troubles Can girl. Waiting is the worst then to have surgery cancelled and have to wait some more - ugh!

    The ladies above are right - try to keep busy. If you are still off work - which I get not being able to focus when you have a stress job as it is - a new home routine is good - even if it does include naps

    I know June 1 can't come fast enough but it will be here before you know it - hang in there and let us know how you do.

    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
    Aug 2017 - and ditto


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