I need reassurance

kikz
kikz Member Posts: 1,345 Member
edited March 2014 in Ovarian Cancer #1
I had my last chemo on 9/16. My oncologist cancelled what would have been the last one on 9/22 because I couldn't tolerate any more. I had ended up in the hospital twice during the chemo. I have appointments scheduled for 11/02 and 11/03 with the oncologist and the oncologist surgeon. I have not even found out what my maintenance is. For a few days now I have had a bit of a bloated feeling. I don't feel that hungry but I am eating normally. I also have a slight pain on the left side where my ovary was. They removed a tumor the size of a box of rice-a-roni (I had to get a visual for myself of the sizes of the tumors). This pain happens when I move, it is not a constant pain; more like a catch. I spoke with the advice nurse at my HMO and she went ahead and scheduled an appointment for me on Monday. I don't want to tell my mom or my son about this. We just started to go back to a sense of normalcy. PLEASE TELL ME NOTHING COULD HAPPEN SO SOON. It's bad enough to live with the feeling of waiting for the other shoe to drop but I never expected to have any symptoms this soon. I thought I would just have to deal with my mind thinking about things.

Karen

Comments

  • Mwee
    Mwee Member Posts: 1,338
    #2
    Dear Karen
    I'm so sorry that you going through this awful anxiety. Sometimes it's way harder to not be undergoing treatment. I'm pleased that you have an appt. for Monday for waiting is the hardest part. As for the pain you are experiencing, could it be scar tissue? I experienced a lot of the "catching" pain, but it went away after awhile.
    (((HUGS))) Maria
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #3
    It's almost certainly "too
    It's almost certainly "too soon", Karen, for this to be a recurrence. As for maintenance, some doctors recommend it and some don't. If you could not complete your initial treatments, it's probably best to give your body some time to recuperate before starting you on more chemo. Maybe your doctor is one of those who prescribes Metformin for maintenance, though. They are all just a little different in their approach.

    It's normal to attribute every ache and pain and twinge to the cancer, but remember....it's not always about cancer. We do have other stuff going on. We can still get plain old gall stones or other things.

    Carlene
  • kikz
    kikz Member Posts: 1,345 Member
    #4
    Hissy_Fitz said:

    It's almost certainly "too
    It's almost certainly "too soon", Karen, for this to be a recurrence. As for maintenance, some doctors recommend it and some don't. If you could not complete your initial treatments, it's probably best to give your body some time to recuperate before starting you on more chemo. Maybe your doctor is one of those who prescribes Metformin for maintenance, though. They are all just a little different in their approach.

    It's normal to attribute every ache and pain and twinge to the cancer, but remember....it's not always about cancer. We do have other stuff going on. We can still get plain old gall stones or other things.

    Carlene

    Thank you
    Thank you ladies for giving me some perspective. I did make an appt to see my doc on Monday. I also made an appt with the shrink I spoke when my "breakup" happened. Hopefully she can help with this phase. By the way I had my gall removed in 1990. Hopefully this is scar tissue or maybe I am sore from straining when I go to the bathroom. I have those problems as it seems many of you do. Well I am much calmer now and hope to have a nice weekend. Thanks again for your support and encouragement and best wishes to all of you.

    Karen
  • leesag
    leesag Member Posts: 621 Member
    #5
    Hi Karen,
    When I finished my
    Hi Karen,

    When I finished my chemo, my oncologist told me that I would probably have twinges of pain from time to time since my insides were most likely still healing and scar tissue would continue to form. She's right, I do, and at my first three month appointment, my CA125 had dropped again from 16 to 12. My doctors never mentioned maintenance to me, and although I asked my gyn/onc about metformin at my last appointment, he advised against any more meds at this time. It seems as though both my onc and my gyn/onc are pretty confident that all will be well.

    I suspect that if there is a recurrence (I'm so proud of myself for saying if and not when!) after a second line treatment they will suggest some type of maintenance. For now, I live day by day, enjoying the feel of new hair growing and renewed energy levels. I also see a counselor weekly to help me deal with the emotional fallout of this. My counselor made a very good point at my last visit. Most people have the ability to suspend the reality of our mortality as unconsciously as they breathe. For us, we've been slapped in the face with it, and it's always there on the edges of our thoughts. We have to consciously move past it. Some days are easier than others. Some minutes are easier than others for that matter.

    On one hand, it's hard to not be actively doing something. On the other hand, it's nice to be able to live normally.

    Hugs!

    Leesa
  • kikz
    kikz Member Posts: 1,345 Member
    #6
    leesag said:

    Hi Karen,
    When I finished my
    Hi Karen,

    When I finished my chemo, my oncologist told me that I would probably have twinges of pain from time to time since my insides were most likely still healing and scar tissue would continue to form. She's right, I do, and at my first three month appointment, my CA125 had dropped again from 16 to 12. My doctors never mentioned maintenance to me, and although I asked my gyn/onc about metformin at my last appointment, he advised against any more meds at this time. It seems as though both my onc and my gyn/onc are pretty confident that all will be well.

    I suspect that if there is a recurrence (I'm so proud of myself for saying if and not when!) after a second line treatment they will suggest some type of maintenance. For now, I live day by day, enjoying the feel of new hair growing and renewed energy levels. I also see a counselor weekly to help me deal with the emotional fallout of this. My counselor made a very good point at my last visit. Most people have the ability to suspend the reality of our mortality as unconsciously as they breathe. For us, we've been slapped in the face with it, and it's always there on the edges of our thoughts. We have to consciously move past it. Some days are easier than others. Some minutes are easier than others for that matter.

    On one hand, it's hard to not be actively doing something. On the other hand, it's nice to be able to live normally.

    Hugs!

    Leesa

    Thank you
    I guess I thought maintenance meant how often you see your doctor and how often a CA 125 or cat scan is done. How do you know if you are NED?

    Karen
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #7
    kikz said:

    Thank you
    I guess I thought maintenance meant how often you see your doctor and how often a CA 125 or cat scan is done. How do you know if you are NED?

    Karen

    NED is determined by your
    NED is determined by your status at the end of initial treatment. If your CA125 is normal and your CT (or PET) scan is clear, then you are considered NED.

    NED is not the same as "cured", something my family does not seem to really grasp. But NED is almost as good.

    I don't know if all doctors consider NED the same as remission, but I asked my doctor if I was in remission and he said, "Oh, absolutely."

    I still see my doctor once every 4 weeks and have my CA125 (plus other blood work) drawn every 4 weeks, as well. But that's just until I finish the year of Taxol maintenance. After that, it's every 3 months for CA125 and every 6 months for CT scan, unless I become symptomatic or my CA125 starts to show a rising trend. But every doctor is different and yours may use a different protocol.

    Carlene
  • leesag
    leesag Member Posts: 621 Member
    #8
    kikz said:

    Thank you
    I guess I thought maintenance meant how often you see your doctor and how often a CA 125 or cat scan is done. How do you know if you are NED?

    Karen

    My oncologist sees me every
    My oncologist sees me every 3 months, and my surgeon (gyn/onc) sees me every 4 months. He replaces my gynecologist. Is this normal?
  • leesag
    leesag Member Posts: 621 Member
    #9
    leesag said:

    My oncologist sees me every
    My oncologist sees me every 3 months, and my surgeon (gyn/onc) sees me every 4 months. He replaces my gynecologist. Is this normal?

    (bumping)

    (bumping)
  • zinaida
    zinaida Member Posts: 221
    #10
    leesag said:

    My oncologist sees me every
    My oncologist sees me every 3 months, and my surgeon (gyn/onc) sees me every 4 months. He replaces my gynecologist. Is this normal?

    Leesa! I did the same for
    Leesa! I did the same for two years. Then my cancer back and I did go for second opinion to doctor , who was surgeon (gyn/onc) and oncologist(chimo treatments) in new cancer center. From there on I see only her. So I think it is normal. ((HUGS)), Zina.
  • sananannie
    sananannie Member Posts: 1
    #11
    Mwee said:

    Dear Karen
    I'm so sorry that you going through this awful anxiety. Sometimes it's way harder to not be undergoing treatment. I'm pleased that you have an appt. for Monday for waiting is the hardest part. As for the pain you are experiencing, could it be scar tissue? I experienced a lot of the "catching" pain, but it went away after awhile.
    (((HUGS))) Maria

    Ct Scans
    I am having a ct scan on Thursday. The Dr.s weren't going to give me one, even though my ca125 as been on the rise for several lmonths. I also have some pain in hip and lower back which they didn't think was connected. I can't go to the bathroom and I am not getting any sleep from worrying about a recurrence. Isn't it better to go ahead and get a scan and have some relief from constant worry. I know too many aren't good.....but I can't live4 with the worry. I am not a good candidate for the ca125 anyway.

    Ann

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