New member - in recurrence

carol2dogs
carol2dogs Member Posts: 132
edited March 2014 in Ovarian Cancer #1
Hello to all!
My name is Carol and I was first diagnosed with ovarian cancer in Nov. of 2005. I had surgery the day before Thanksgiving that year. I sailed through chemo and have done extremely well until my CA125 numbers started going up last Dec. I just had a doctor's appt. last Tuesday, and he "felt something." Without waiting for the latest CA125 results, he scheduled me for a CT scan, for April 8th. When I got my results, my CA125 numbers had gone from an already-elevated 49 to 82.6.
As you can guess, I'm plenty scared. I probably shouldn't be, since I've already been through chemo, but I am. I just really need to talk to survivors, who can understand what I'm going through.
Thanks for being there. It is so wonderful to have access to other ovarian cancer survivors!

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #3
    Dear Carol, Welcome the board and so sorry you had to use it. You will find lots of support and understanding here. I still remember when my ca125 went back up and I had to deal with the cancer again, a little faster than you, but still has to be similar feelings. All I can say is the Lord well send you what you need to deal with it again and once the initial shock wears off ~ you feel better and ready to battle again.

    Sending lots of hugs n prayers Bonnie
  • mopar
    mopar Member Posts: 1,972 Member
    #4
    Hi Carol:
    Sorry to meet this way, but welcome to a group of wonderful survivors! You'll get much encouragement and inspiration here.

    Briefly, my dx was March 2000 (1C) - surgery, chemo. My recurrance was February 2006 - more surgery and chemo. Both times I had no clue that something was going on, except for a rise in CA125. After all these years I know the numbers can go up and down for lots of reasons. But the consistent rise without going back down is something to look at - so your doctor sounds thorough. We all know the 'fear and anxiety', the waiting, and those awful words. But as you will see here there are so many of us that have dealt with this multiple times, and some ongoing. As Bonnie said, you will find the strength to deal with whatever comes of this, if anything. Stay strong and just take one day at a time. Don't anticipate the worst, and don't look too far ahead.

    Sending prayers and hugs!
    Monika
  • floridajo
    floridajo Member Posts: 480
    #5
    Hi Carol,
    Right now I'm having chemo for my second reccurence..so I do understand the fear and confusion and worse of all the unknown. My Onc does not treat based on numbers,he treats based on scan or other test results. On my first recurrence we had scheduled a ca-125 and a ct scan. He said if the ca test came down there would be no treatment. Well my numbers did do just that,they went down.So I feeling hope that my scan would be ok. The Ct scan showed disease progression. Back on chemo for me...it was scarier to me than the 1st diagnosis...and totally took me by surprise. However, I have found that the secondary chemos to be easy to tolerate. I have some minor nausea,some thinning of the hair and of course fatique. other than that I'm feeling good and sometimes even forget that I'm having chemo(I keep forgetting my pre-chemo labs that need to be drawn before each treatment)Good luck,I'm here and help you as much as I can. YOu can also send me a private e-mail if your like. Stay strong..you can do this!!!! ((((hugz))))~~~Joanne
  • kris43
    kris43 Member Posts: 275
    #6
    HI Carol. I am so glad you came to the site and felt comfortable enough to share. I have only been off chemo for 3 months now, but as with all of us, we are afraid of that word recurrence. It does sound like your doctor is on top of things and that is a good thing. I hope you continue to post - there are so many women with so much knowledge on this site, you will find great comfort.

    Take good care and sending good thoughts your way. Hugs.
    Kris
  • carol2dogs
    carol2dogs Member Posts: 132
    #7
    unknown said:

    This comment has been removed by the Moderator

    Thanks for your reply. I'm not sure exactly where he found something, but it was during a normal pelvic and anal exam. He was definitely rougher than normal. When I was first diagnosed, my internal organs were literally swimming in fluid, and the cancer was widespread. He took my appendix out while he was in there. So I guess it could come back just about anywhere in the abdominal/pelvic area. We'll find out with the CT scan.
    Thanks. All of your support helps so very much!
    Carol
  • carol2dogs
    carol2dogs Member Posts: 132
    #8
    BonnieR said:

    Dear Carol, Welcome the board and so sorry you had to use it. You will find lots of support and understanding here. I still remember when my ca125 went back up and I had to deal with the cancer again, a little faster than you, but still has to be similar feelings. All I can say is the Lord well send you what you need to deal with it again and once the initial shock wears off ~ you feel better and ready to battle again.

    Sending lots of hugs n prayers Bonnie

    Thanks, Bonnie.
    I appreciate your support and encouragement very much. It really helps to hear from others who have been through this.
    Carol
  • carol2dogs
    carol2dogs Member Posts: 132
    #9
    floridajo said:

    Hi Carol,
    Right now I'm having chemo for my second reccurence..so I do understand the fear and confusion and worse of all the unknown. My Onc does not treat based on numbers,he treats based on scan or other test results. On my first recurrence we had scheduled a ca-125 and a ct scan. He said if the ca test came down there would be no treatment. Well my numbers did do just that,they went down.So I feeling hope that my scan would be ok. The Ct scan showed disease progression. Back on chemo for me...it was scarier to me than the 1st diagnosis...and totally took me by surprise. However, I have found that the secondary chemos to be easy to tolerate. I have some minor nausea,some thinning of the hair and of course fatique. other than that I'm feeling good and sometimes even forget that I'm having chemo(I keep forgetting my pre-chemo labs that need to be drawn before each treatment)Good luck,I'm here and help you as much as I can. YOu can also send me a private e-mail if your like. Stay strong..you can do this!!!! ((((hugz))))~~~Joanne

    Joanne,
    Thanks. I just may take you up on that offer of sending you a private email - how does one send that info? I don't mind giving you mine on this board - just let me know. It sounds like we have a lot in common in terms of diagnosis and recurrence - I too am more scared this time than the first. I think that the first time, it is easy to be too shocked at it all to remember to be afraid. I'm glad to hear that this chemo is easier for and on you - I hope that will be true for me as well. Did you have surgery for your recurrence?
    Keep staying strong and keep staying an excellent example for the rest of us! Thanks and hugz back at you!
  • lindachris
    lindachris Member Posts: 173
    #10
    Carol: My wife Linda was similarly shocked when cancer came back. Her CA-125 had been 6 or 7 all through diagnosis and chemo the first time. Really not an indicator for us then. But late last summer it shot up and reached 500 before chemo and surgery. There were lots of tests and bouts of ascites but after surgery and chemo the numbers dropped back down to normal. Where we pray it stays, and that we've gotten to it. Recurrence in some ways is harder than first time through. But your doctor is astute and doing the right things. Keep in touch here and these folks can be a great guide.
  • dorion
    dorion Member Posts: 183
    #11
    Hello Carol
    I am so sorry to hear this news.....I can only imagine how scared you are, wait a minute.....I KNOW how scared you are...dah....I said that I can only imagine because I am fairly new to this wonderful website, me I was diagnosed in December 4th 2007, had surgery on the 26th and was diagnosed stage 4....well the news for me wasn't very good, telling me that I had 3 1/2 years to live, now I know SCARED!!! But as I'm learning from everyone in this glorious website that everyone is different and we can't listen to numbers and stats, I only know that I have a 10 year old who needs me and I only know that I am fighting tooth and nail to beat this thing. I have only gone round 2 in my chemo and like you I seem to be weathering it pretty good concidering the nightmare stories I've heard from other women going through chemo. But I am scared that when all is said and done that this thing won't go away, in the back of my head I'm terrified on the same tolken I'm trying to be strong and hopeful and very opptimistic. I was laying on the bed with my sweet Meghan (my daughter) in my arms this morning and I"m thinking "Oh God, what if I only have a year" "what if....." I stop myself, at least I try to.....I try to think about making plans for the future then find myself thinking.....what's the point in it, I won't be around long enough.....then once again I try to reason with myself. It's natural for us to go through this whole process. We are here for you every step of the way, you and I are not alone......we all share the same fears the same hopes and the same dreams! We all have loved ones who we want to be around for many years to come. On that note, all we can do is pray and keep eachother from going insane with our random thoughts of dispare and agony and feelings of hopelessness. I look at us as worriors, soldiers at war and we are!! I am not going to let this thing win!!!!! You won't either......we are here!!! And we will WIN!!!
    Linda
  • groundeffect
    groundeffect Member Posts: 639 Member
    #12
    Carol,

    I've just been to a gyn/onc to get advice about my climbing CA-125. On my five-year anniversary visit it had climbed from its normal of 17 or less to 42. That was in September last year; the last test I know the results of put it at 142. I had a CT scan in December and a PET scan in February with no evidence of any cancer produced.

    The oncologist seems a little skeptical that it's a recurrence of cancer, and has suggested that it may be something else. He said that arthritis can cause a rise (I should have asked by how much), and there are so many other things that can cause it, I'm still not overly concerned.

    I've got a prescription for Tamoxifen to take to see if it will have any effect on the CA-125 level.

    Part of the reason I'm not overly concerned at this point is because I've spent so much time in the company of the women in my local support group. We have a small group, but just being able to sit with them and discuss their treatments, fears, doctors, and drugs has added to my personal knowledge tremendously. I'm glad you're joining in with this group's "conversations"! If there is a local support group in your area, I highly recommend getting in touch with them. It took me a while to get over my reluctance to join in, but it's been well worth it for me.
  • carol2dogs
    carol2dogs Member Posts: 132
    #13
    dorion said:

    Hello Carol
    I am so sorry to hear this news.....I can only imagine how scared you are, wait a minute.....I KNOW how scared you are...dah....I said that I can only imagine because I am fairly new to this wonderful website, me I was diagnosed in December 4th 2007, had surgery on the 26th and was diagnosed stage 4....well the news for me wasn't very good, telling me that I had 3 1/2 years to live, now I know SCARED!!! But as I'm learning from everyone in this glorious website that everyone is different and we can't listen to numbers and stats, I only know that I have a 10 year old who needs me and I only know that I am fighting tooth and nail to beat this thing. I have only gone round 2 in my chemo and like you I seem to be weathering it pretty good concidering the nightmare stories I've heard from other women going through chemo. But I am scared that when all is said and done that this thing won't go away, in the back of my head I'm terrified on the same tolken I'm trying to be strong and hopeful and very opptimistic. I was laying on the bed with my sweet Meghan (my daughter) in my arms this morning and I"m thinking "Oh God, what if I only have a year" "what if....." I stop myself, at least I try to.....I try to think about making plans for the future then find myself thinking.....what's the point in it, I won't be around long enough.....then once again I try to reason with myself. It's natural for us to go through this whole process. We are here for you every step of the way, you and I are not alone......we all share the same fears the same hopes and the same dreams! We all have loved ones who we want to be around for many years to come. On that note, all we can do is pray and keep eachother from going insane with our random thoughts of dispare and agony and feelings of hopelessness. I look at us as worriors, soldiers at war and we are!! I am not going to let this thing win!!!!! You won't either......we are here!!! And we will WIN!!!
    Linda

    Linda,
    Thanks for your reply. It sounds like your situation is a lot scarier than mine! Please do use this group to talk about your fears. I know when I was going through my first round (did not use this board then), one of my biggest frustrations was not having anyone I could talk frankly with. Everyone wanted to tell me how good I was doing, how I would beat it, etc., and nobody wanted to hear me say I was scared. But I was scared, and I badly wanted to say so. So, please, know that you can say that here and we will listen. You have every right to feel scared. Yes, we are warriors and we will beat this, but we also get to have moments of not feeling so strong as well.
    By the way, I found some nice stuff on explaining cancer to children by googling. I used it for my students at school, and it worked well.
    I will keep you in my prayers and pray that God allows you to be an inspiring story of beating all of the odds! Stay strong!
    Carol

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