New here and so afraid

kpgeorge
kpgeorge Member Posts: 9 Member
edited December 2022 in Ovarian Cancer #1

Hello. New to this group. Have not been diagnosed yet but fear the worst. I am 60, post-menopausal. Saw a doctor a month ago after two bouts of sharp pain on my right side while

running. CT shows 9.4 cm “soft tissue mass.” No other symptoms but today I got blood work back - CA 125 of 287 though CEA and CA 19-9 were at normal levels. I have TVUS on dec 13. Trying hard not to panic but I look at my kids - youngest is just 10 (he was adopted) - and I break down in tears that I manage to hide from them. My doctor says not to assume the worst from the CA 125 levels but it is my human nature to do so….

i welcome any words of advice

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Comments

  • deelite2022
    deelite2022 Member Posts: 8 Member

    Hi there,

    I am in the process of being tested as well. Im 51, a single mom and have 3 boys. It’s so heard not to worry. How are you feeling? Still having pain?

  • kpgeorge
    kpgeorge Member Posts: 9 Member

    Hi. This is so scary. I am feeling fine. No pain though in my head I am imagining the cancer spreading all over! I know it is just the stress speaking…when are your next tests? Did you have the CA125 yet?

  • deelite2022
    deelite2022 Member Posts: 8 Member

    I was having bad pain in my lower left pelvic area. It was constant and felt like my ovary was being squeezed and twisted. Dr. had me take an ultrasound and they found a 6cm cyst and uterine fibroids. I took the CA 125 and it came up at 68. Now I wait for an MRI and CT scan.

    I just want a definitive answer. Tell me what it is and let’s deal with it. This pain is completely affecting every aspect of my life.

  • kpgeorge
    kpgeorge Member Posts: 9 Member

    Yes. I feel exactly the same. I am expecting that they will find cancer but i pray it hasn’t spread and the surgery and chemo can remove it. I keep imagining that I may have had signs before (fatigue, frequent urination) but the fatigue passed a long time ago and I drink lots of water so urination may be expected….

    what day are your tests? I now have the ultrasound on Dec 8 and surgery the 13th. I guess biopsy results take a week after surgery….on the initial CT, the cyst appears to be confined to right ovary but doctors cannot see everything with a simple CT…..

  • deelite2022
    deelite2022 Member Posts: 8 Member

    So they are removing the ovary without waiting to see if it’s cancerous?

  • kpgeorge
    kpgeorge Member Posts: 9 Member

    Yes because the mass is large and I am post menopausal. That being said, with my Ca125 being so high, the doctor fears the worst

  • deelite2022
    deelite2022 Member Posts: 8 Member

    Oh no…. Sorry to hear that!

    How high was your CA 125? And how large was the mass?

  • deelite2022
    deelite2022 Member Posts: 8 Member

    Sorry- just reread the above. 287.

  • kpgeorge
    kpgeorge Member Posts: 9 Member

    Yes and mass is 9.4 cm. The good news though is that scan doesn’t show irregular edges etc. will

    know more later

  • kpgeorge
    kpgeorge Member Posts: 9 Member

    What have your doctors said about yours?

  • deelite2022
    deelite2022 Member Posts: 8 Member

    I just spoke to mine earlier. He said that 68 wasn’t too much to be concerned about - something over 200 would be more worrisome. Now it’s just a waiting game for an MRI and a gynecologist appt. I’m in vancouver and there are long waitlists to see specialists. I’ve been having pain all day today and it’s affecting my whole life…. In a negative way.

    have you told your family what’s going on?

  • kpgeorge
    kpgeorge Member Posts: 9 Member

    I pray that yours turns out to be a malignant cyst. That may explain why you are in pain. I am only in pain when I run and even then I only felt piercing pain twice…. Would it help if you went to the emergency room?

  • deelite2022
    deelite2022 Member Posts: 8 Member

    I’ve considered so many times but have not because the hospitals are so full and it’s hours and hours to be seen, I have my gyno appt on Wednesday morning - got a cancellation spot!

  • kpgeorge
    kpgeorge Member Posts: 9 Member

    Yay!! So happy you got the appointment! Please keep me posted

  • luuDove
    luuDove Member Posts: 1 Member

    Hi ladies. New here. Saying ladies because it was a safe bet being ovarian cancer. If I am wrong, my apologies & “Hi ladies & gents”. That being said, I was reading what y’all wrote and feeling so bad for u both. I am Lisa, Ovarian cancer stage IVa, born in 75, married since 99’, no kids or previous health issues. Dx: 6/8/20. I thought Maybe I was constipated, was about a week or two and I was finishing up all the over the counter meds that I could get in May of 2020 during COVID, most businesses were closed, including the Non-profit company that employed me over the past 8 years. No pain or signs at all. I was 5’4 @ 135-140lbs, had been for 20 years. I looked about 6 months pregnant & could no longer bend over or get comfortable. I was too afraid to go sooner because I had never been sick or been to a hospital for myself, but we couldn’t ignore it not going away so hubby drove us to the hospital. It was eerie how quiet it was. The ER DR. did a scan and some blood tests and then came back to my curtain area. He was gruff and almost impatient. He said it looks like stomach cancer that has spread & that I needed to contact my family and start making arrangements, as he closed a file clip board & waltzed out. My husband sank to the floor and every ounce of air I had inside me began to burn and my face felt like hot coals. I screamed for him to come back, I shakily said he had better have someone else for me to talk with and that his bedside manner was comparative to Hitler. It still traumatizes me to think of that happening to someone else going through what we r. I eventually was able to wrap my head around the difference in type of Dr. an ER Dr. is. And luckily, the oncology department was prepared for someone like me & there is where I met my oncologist and her amazing team? I apologize for this novel I’m writing. It got worse before it got better but I’m proof it can get better. I’m not saying any part of my life went back to normal or that I don’t wake up terrified or sad at times, or that I have been given any more time on this earth than someone who hasn’t gone through this. That woman I was, no matter how far back or hard I try to look back, she is gone. I liked her for the first time in my life too. Didn’t even get to say goodbye.

    I’m just saying you can do this. Actually ladies, you have to. U have families so u just need to look at this as u dont have a choice😊My CA-125 was over 1078.0 on 6/8/20 & is now holding between 14 & 23. So many things happened between then & now. Kicked into early menopause, full hysterectomy, collapsed lung, an ileostomy I now call Gabby, surgeries, memory loss, being fired due to getting sick, I lost all my hair, everywhere, weighed 63lbs at my lowest, couldn’t eat, could no longer walk or maintain myself, I looked like a mix of Denise the Menace and Gollum from lord of the rings, my family was thousands of miles away🙄all but one or two of our lifelong friends faded away or just disappeared, I made new friends through cancer support groups, but lost some of those new friends, my father in law, my best friends father, & myself were all doing chemo at the same time… they both passed within a few months of one another. It was painful for us all to b around each other for awhile, which was very lonely. My guilt still sneaks up on me. So hubby & I both lost a parent 4 days apart from one another & Drs.orders that traveling for the funerals was not an option at that time. Too many things to continue listing. It was so difficult not sinking into a dark hole.Please think positive. I truly believe that is 80%of why I am still here. I refused to except anything I was told or read. I’m the only person that knows me 100% & knows what I’m capable of, regardless of statistics! Don’t ask yourself what ur going to do. Don’t ask how ur going to do it. None of it matters cause there is no other option but to kick cancers ****, as many times as u have to. There is no other option!

    With love, courage, hope, compassion, understanding, & peace,

    LuuDove

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,112 Member

    LuuDove, thank you for sharing your story with us and you don't have to apologize for the "novel". I hate that a doctor would deliver information to you in such a way but GOOD FOR YOU to stand up to him like you did.

    Surviving treatment as you mentioned while you lose some you love is difficult. Finding someone or someplace to chat with helps, which is why this is a special place.

    Hugs dear one.

  • kpgeorge
    kpgeorge Member Posts: 9 Member

    Had my surgery and it went well and doctor was able to recover ovaries, tubes and uterus and the mass. She said it appeared we caught it earlier than most as it had not impacted other organs. However, I have an enlarged nymph node in an area that is inoperable. That terrifies me. But my doctor says we can treat with chemo and or radiation. I am trying to stay optimistic and celebrate the winning moments like getting the cyst out without being opened up

  • AS514
    AS514 Member Posts: 3 *

    Hi new here but not new to Ovarian cancer. short Diagnosed 2015 at 58. Had a bad pain went to ER and CT showed Large tumor on right. Saw gyno surgeon 2 days later Had a complete Hysterectomy the following week started chemo 2 week later. Also had genetic testing found mutation ATM gene. Mom, 1 aunt and 2 sisters also tested Mom and Aunt also positive for mutation. Responded to chemo well, 4 cycles, and did all the follow ups. CA125 testing showed increases to 20 but not crazy increases.

    2018 recurrence with 2 masses one in pelvis and one at liver. Chemo again 6 cycles. pelvic mass disappeared and liver tumor shrunk significantly but was inoperable so post Chemo was put on Zejula daily. At that time Onco Dr. Told me I would always have cancer and our job now was to manage my disease. Zejula worked well surpressing the tumor growth for 3.5 years. But follow up CA 125 testing showed an increase, to only 15, but CT, PET, MRI confirmed the the liver tumor had grown.

    Last week I had surgery to kill the inoperable LIVER tumor. Also few weeks ago had Signatera Biopsy that shows that my liver tumor has mutated and this time I am a candidate to Immunotherapy in lieu of Chemo.

    So here what I hope you can take away form My Ovarian Cancer story this being my second recurrence in 7.5 years...

    After the first recurrence I did seek a 2nd opinion at a major Cancer center in Tampa, my Onco was very supportive . At that time 3.5 years ago a specialist told me there are so many in the hopper for your cancer. She continued You will probably have another recurrence but you'll have more options the next time and very possibly no Chemo. That has all come true.....the amount of new testing and clinical trials have made a world of difference and I am hopeful this is my last go around but.....I have had years in between where things were pretty good, I had 2 knees replaced in 2021, I have continued to run my business. I'll do what I have to do I am not ready to give up on me or you sister survivors.

    DO THE FOLLOW UPS...Catching it early makes all the difference.

    Hang in there!

  • AS514
    AS514 Member Posts: 3 *

    OOPs forgot to say the CA125 is an indicator......but for me its not a good indicator....not sure why but it skews low for me and does not indicate the seriousness of a problem. Be vigilant listen to you body.

  • deelite2022
    deelite2022 Member Posts: 8 Member

    Thank you for telling us about your journey.

    after the CT scan, it’s amazing you were treated immediately! I’ve had ongoing pain for 2 1/2 months now, finally had the CA125 4 weeks ago which was only 67, and ultrasound about 3 weeks ago. I have my gyno appt tomorrow and an MRI on the 28th which brings the testing to 6 weeks long. Since it’s taking so long, I’m assuming my case is not serious. Hopefully just a benign cyst which can be removed surgically.