Feeling lost and confused right now

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AnneBehymer
AnneBehymer Member Posts: 738 Member
in Ovarian Cancer #1
Hi all well I went to the ONC today to talk about what we are going to do regarding the rising CA125 it 82 right now. When I walked into the meeting I thought we were going to talk about cat scan vs pet scan what I found out was I am being dropped from the study because my CA125 is still rising and not dropping needless to say I feel lost right now what do I do. To make matter worst my doctor kept saying I don't what to tell you I don't know what these numbers are going up so I don't know if I could say I am sorry but the cancer is back or do I say the numbers are up because my fybromialga is acting up so he said he wanted to do do blood work at the end of this month and then a cat scan the early part of April. I then said what about a Pet scan the cat scan only covers my chest, my stomache, and my pelvis area what if it has spread to other parts of my body these test will not show them. He then agreed then agreed and said that's a good ideal. So I will have a pet scan this week or early next week, the a CA125 at the end of the month, and then a Cat scan the early weeks of April. I am so new to this that if I am out of remission it will be the first time so I do not know what to think about all of this. So please pray for me as I am scard spitless. I have so many question yet don't even know what to ask my biggest fear is the cancer growning inside of me right now and when the is said and done whats next surgery or not. The have stope my chemo so that is a good thing in I really wanted a break but scary is the cancer growing this whole time I don't know I feel so lost right now. Talk to you all later.

Love, Hugs, and Prayers
Anne

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  • kellyh33
    kellyh33 Member Posts: 287
    #2
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    Don't panic.....
    A CA125 count of 82 is pretty low. You don't have all the information yet so don't panic. CA 125 numbers can rise for a number of reasons not related to cancers. Mom's oncologist didn't even pay attention to the numbers. She always said it was the CT scan that told the story.
    Try to keep the faith that things will swing your way. I wish I was there to give you a big hug.
    Kelly
  • AnneBehymer
    AnneBehymer Member Posts: 738 Member
    #3
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    kellyh33 said:

    Don't panic.....
    A CA125 count of 82 is pretty low. You don't have all the information yet so don't panic. CA 125 numbers can rise for a number of reasons not related to cancers. Mom's oncologist didn't even pay attention to the numbers. She always said it was the CT scan that told the story.
    Try to keep the faith that things will swing your way. I wish I was there to give you a big hug.
    Kelly

    Trying to keep the faith
    I know my number is low but it has been moving up each and ever visit for the past four blood draws. I also am off the chemo that to keep me from coming out of remission. So I am trying not to panic but I don't know what or how to think that I am off a medication that I have been on since june of last year. I just don't know what to think and the last time I felt this way I was being told that I had cancer.


    Anne
  • Gottalovelife
    Gottalovelife Member Posts: 45
    #4
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    I know it's scary
    I hope and pray everything is clear for you. It is darn scary when those numbers start going up and you don't know what is going on or if there is something going on and what kind of treatment would need to be done. It's the fear of not knowing. I hate those darn numbers, the fear that we all go through when we have to get those numbers checked is horrific, that fear is something we have to deal with the rest of our lives and that makes me mad that the fear will always be there. Yuck! You were smart to ask for the pet scan that will tell more than a cat scan, hopefully it will all be clear and the numbers are going up for some other reason, you never know, have faith and believe!

    Hugs and Prayers!
    Cindy
  • carolenk
    carolenk Member Posts: 907 Member
    #5
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    Gottalovelife said:

    I know it's scary
    I hope and pray everything is clear for you. It is darn scary when those numbers start going up and you don't know what is going on or if there is something going on and what kind of treatment would need to be done. It's the fear of not knowing. I hate those darn numbers, the fear that we all go through when we have to get those numbers checked is horrific, that fear is something we have to deal with the rest of our lives and that makes me mad that the fear will always be there. Yuck! You were smart to ask for the pet scan that will tell more than a cat scan, hopefully it will all be clear and the numbers are going up for some other reason, you never know, have faith and believe!

    Hugs and Prayers!
    Cindy

    Sorry to hear you have no
    Sorry to hear you have no answers at this time. It's obvious to me that the Avastin was causing you so much misery--I'm hoping you start feeling better soon.

    What if the Avastin was causing your CA-125 to go up? You had so much joint pain, it would not surprise me.

    When I have to deal with uncertainty, I keep looking for a reason to be happy. Even if it is something small. I make something up in my head and think about that to distract myself from thoughts that make me feel bad.

    Someone said "Patience is intelligent waiting." Find a happy thought and stick to it while you are waiting. I started crocheting pot holders--it takes my mind off myself & I feel productive making SOMETHING. ; )
  • whiterose
    whiterose Member Posts: 89
    #6
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    Try to
    Try to keep your spirits up. I know it's very hard. When I start to worry, I try to do something that I feel will be helpful to my body and recovery-----whether it's taking a power walk, doing yoga with a DVD, or preparing something healthy to eat that will be good for me. Then I feel as if I'm taking some positive steps instead of dwelling on the negative. Also, getting out of the house and having lunch with a friend or relative, or going shopping takes my mind off things for a while. When I do things like this, I come back with a more positive outlook just because I got away from it for a while. I'm sure you know all of these things already, but they really work! I will say an extra prayer for you. My good friend started praying for me when I told her of my condition, and I got my appetite back almost right after that! I kept losing weight, 4-6 lbs. every week and was just wasting away. So they do work! Bless you.....
  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
    #7
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    You are right
    I am so glad you are going to get a pet scan ,it shows things smaller than a ct scan. Is this your regular dr? Why did you have to come up with the good idea? That is his job.
    Just relax you will get answers from the pet so you will know what to do. What study were you on? I'm sorry my chemo brain doesn't let me remember.
    Colleen
  • mopar
    mopar Member Posts: 1,972 Member
    #8
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    DON'T PANIC IS GOOD ADVICE
    Looks like we're all in agreement here - don't push the panic button. That rise could be related to something else entirely. My 'norm' over the last 12 years has fluctuated from 13 to 16. Imagine my panic when it shot up to 48 after taking Boniva! Although my doctor didn't think it was related, I was ABSOLUTELY SURE it was. Even his PA said that Boniva causes inflammation, thus the possible reason for a rise in numbers. I was so, so sick for 2 weeks after that Boniva, I will never ever take it again. The bone/body pain was so bad. I had a fever, shakes, pain, it was horrible.

    So, the number rise can come from so many sources - infection, stress, and more. Hang in there!

    Sending Hugs and Prayers,
    Monika

    (I apologize if this is a double post - don't know what happened!)
  • Radioactive34
    Radioactive34 Member Posts: 391 Member
    #9
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    mopar said:

    DON'T PANIC IS GOOD ADVICE
    Looks like we're all in agreement here - don't push the panic button. That rise could be related to something else entirely. My 'norm' over the last 12 years has fluctuated from 13 to 16. Imagine my panic when it shot up to 48 after taking Boniva! Although my doctor didn't think it was related, I was ABSOLUTELY SURE it was. Even his PA said that Boniva causes inflammation, thus the possible reason for a rise in numbers. I was so, so sick for 2 weeks after that Boniva, I will never ever take it again. The bone/body pain was so bad. I had a fever, shakes, pain, it was horrible.

    So, the number rise can come from so many sources - infection, stress, and more. Hang in there!

    Sending Hugs and Prayers,
    Monika

    (I apologize if this is a double post - don't know what happened!)

    I second and third all the
    I second and third all the good advice given...I follow it up with hugs and prayers..sending warm vibes your way
  • kikz
    kikz Member Posts: 1,345 Member
    #10
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    Radioactive34 said:

    I second and third all the
    I second and third all the good advice given...I follow it up with hugs and prayers..sending warm vibes your way

    Anne
    I have my fingers and toes crossed that you will get some good news. I understand your being scared about your number even when you are being told it is low. Any rise in that number is scary for us. I was overcome with emotion for a couple of days when mine went from 5 to 8. The whole thing boils down to our lack of control. We are at the mercy of the disease and the doctors, although I thank God for mine; they do not have all the answers. I sometimes feel like they have no answers. I am sending good thoughts and prayers your way.

    Karen
  • lovesanimals
    lovesanimals Member Posts: 1,366 Member
    #11
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    kikz said:

    Anne
    I have my fingers and toes crossed that you will get some good news. I understand your being scared about your number even when you are being told it is low. Any rise in that number is scary for us. I was overcome with emotion for a couple of days when mine went from 5 to 8. The whole thing boils down to our lack of control. We are at the mercy of the disease and the doctors, although I thank God for mine; they do not have all the answers. I sometimes feel like they have no answers. I am sending good thoughts and prayers your way.

    Karen

    Dear Anne
    I wish I had the ability to take away your fear and worry. I'm praying that your pet scan is clear.

    Take care,
    Kelly
  • azgrandma
    azgrandma Member Posts: 609 Member
    #12
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    lovesanimals said:

    Dear Anne
    I wish I had the ability to take away your fear and worry. I'm praying that your pet scan is clear.

    Take care,
    Kelly

    praying
    I am praying
  • AnneBehymer
    AnneBehymer Member Posts: 738 Member
    #13
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    Cafewoman53 said:

    You are right
    I am so glad you are going to get a pet scan ,it shows things smaller than a ct scan. Is this your regular dr? Why did you have to come up with the good idea? That is his job.
    Just relax you will get answers from the pet so you will know what to do. What study were you on? I'm sorry my chemo brain doesn't let me remember.
    Colleen

    colleen I am so right there
    colleen I am so right there with you and I think that is what is bothering me so much it was because he is at such a loss why my number is rising and does not know what to do he's the doctor not me so it has me feeling very lost.

    Anne
  • AnneBehymer
    AnneBehymer Member Posts: 738 Member
    #14
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    azgrandma said:

    praying
    I am praying

    Thank so much for your love
    Thank so much for your love and support I know I can come here and always count on you all to lift me up when I am down. I am trying not to let it get me so down but when you see your doctor telling you I have answers and not even offering the Petscan I had to offer and then he turns to me and said that is a good ideal and turns to the nures and say order one for her makes me lose just a little truse in my ONC. I know he is good and trying hard so I am going to stike with him through the testing and go from there thank you all so much.

    Anne

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