OK, Mixed results..has any one experienced this???

Lisa13Q
Lisa13Q Member Posts: 677
edited March 2014 in Ovarian Cancer #1
First, thank you all for your thoughts and prayers. Bonnie, I was thinking a lot about you today and hope things went well.Here's how our day went:

Mom's CT scan shows an area, near where they re-sectioned her colon that is "suspect (this area was cancer intense obviously). The radiologist says she's cancer free and that's scar tissue and fluid. Oncologist says, "not so fast", her Ca-125 last time was 125 (so ironic I think) and oncologist is concerned. She thinks if Mom was cancer free it should be lower. Soooo....we don't really know. Shouldn't they be able to tell scar tissue from cancer?

The Good news: she gets to go to Fl and see her friends. She has a small apartment there and my sister will take her down Feb. 10th. they will take a Ca-125 while she's there and if it starts to go up, she will have to come back and they will put her on Doxil?

OK, has anyone else had a questionable area like this on a CT scan, and a mixed message?? Who trumps who? Radiologist or oncologist?

Finally, is doxil effective? How are side effect? mom has another transfusion tomorrow as her counts are so bad still even from 3 weeks ago. Clearly her body has had enough for now. Anyway, that was the day. Hope yours were good.

Comments

  • Barbara53
    Barbara53 Member Posts: 652
    #2
    Who's in charge
    Considering all you mother has been through, I would say that you have a good report overall. Forget the Ca125, which is relative and probably not so reliable for many people anyway. Ditto on the CT. Five months ago, my Mom's onc. waved his arms over her back and said there might be "something suspicious" from the CT/PT, and nothing has come of it yet. However, we still don't know what's going on clinically with her left foot... off to the orthopedist today, because she has some new skin issues on her ankle.

    I went to bed mad at her because she caused the damage trimming back bushes in her yard, even though she knew I would be here in 3 days. This morning I'm thinking more clearly. Working in her yard is one of her favorite things to do, and right now that's what counts. Send your mother to Florida today! Here on the Gulf Coast, it will be sunny and 65 today.

    I think the oncologist should have the loudest medical voice at this time, because she has such extensive experience with this disease, which can follow many myriad paths. My mother's left foot is a huge comfort issue right now, so the orthopedist is our top guy. That could change tomorrow or next week or next month.

    But ultimately none of these people are in charge anyway.
  • saundra
    saundra Member Posts: 1,370 Member
    #3
    YES, Indeed
    CT's are tricky sometimes. I had three liver tumors burned out during the debulking surgery in July 2007.
    The first CT came back saying they were larger than before the chemo and surgery. I was stunned as the RFA was supposed to get them all out. Over the weekend I heard from three different sources that CT's could not tell the difference in a hole filled with fluid and a solid tumor so I called the oncologist and asked if anyone told the radiologist about the RFA on the liver tumors. The answer came back "NO" and a new read was ordered. There are mistakes. CT scans, I understand, can be set to different intensity and some only pick up tumors over one half cm. There are lots of varibles.

    Different chemos work on different people's tumor cells differently. Doxil doesn't change the reading in CA125 as rapidly as carbo and taxol. Mostly not until after three doses, I hear. I have just started it.
    Carbo works really fast on me.

    Good to travel when you can and get a rest from chemo to recover.
    Saundra
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #4
    Good News
    Hi Lisa,

    Thanks for update on your mom, it does sound like good news to me too. Now how are you doing? I have had times when then oncs and the radioligists disagree. LOL I lean towards the radioligist report as that is what they went to school for. But Drs have a bit of a natural instinct and it could be microscopic cancer that isn't showing on the ct scan, I have had this happen ~ in fact I believe that is what is going on right now in my body.

    I had good results with doxil, it was actually one of the few drugs that allowed me to take a 3 month break from chemo. I would try it again I think. Today is off to the hospital to get another desentized carbo treatment, my tumor markers doubled but my doc feels it is still helping. This is a harder stage of treating the disease, because although tumor markers factor in they don't rule. :-) Hugs ♥ Prayers ♥ Bonnie
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #5
    BonnieR said:

    Good News
    Hi Lisa,

    Thanks for update on your mom, it does sound like good news to me too. Now how are you doing? I have had times when then oncs and the radioligists disagree. LOL I lean towards the radioligist report as that is what they went to school for. But Drs have a bit of a natural instinct and it could be microscopic cancer that isn't showing on the ct scan, I have had this happen ~ in fact I believe that is what is going on right now in my body.

    I had good results with doxil, it was actually one of the few drugs that allowed me to take a 3 month break from chemo. I would try it again I think. Today is off to the hospital to get another desentized carbo treatment, my tumor markers doubled but my doc feels it is still helping. This is a harder stage of treating the disease, because although tumor markers factor in they don't rule. :-) Hugs ♥ Prayers ♥ Bonnie

    I am getting chemo after a VERY mixed-message diagnosis.
    I guess cancer treatment is much more an art than a science. In November I was 5 months in remission after my initial treatment protocol when I had a regular 3-month CA-125 drawn that showed a spike from a CA-125 of 11 to 155. I have a lot of infammation in my bowels from the radiation I had in May and June and my gyn-onc felt that inflammation was likely the cause of the spike in my CA-125. But my chemo-onc wasn't convinced and ordered a CT-scan that was initially reported to me as 'NED', but when the involved CT-technician called the radiologist's attention to a possible enlarged lymph node she saw during the scan, a second look was given to my CT-scan and there was enough of a question to call for a PET-scan. (The spike in the CA-125 factored into this decision.) The Pet-scan lit up 3 lymph nodes, but only 1 of them was in a place that could be biopsied in any way. Since, even if the 1 accessible lymph node came up as cancer-free, we still would be unable to know about the other 2 lymph nodes, so we decided to skip any biopsies, assume this is a recurrance, and start chemo again immediately. I was put on a mild dose of weekly taxol to 'hold' me until after Christmas when we thought I'd probably go on Doxil. But the taxol started lowering my CA-125 (currently at 49) and I have been on weekly taxol since. In this instance, my chemo-onc's opinion was given precidence over my gyn-onc's opinion, although I will say that my gyn-onc encourged the chemo after the PET-scan also. But it does show that 100% diagnosis without physical evidence is hard to get, and you have to just stay personally informed and trust that they know what they're doing.

    (BTW: my CA-125 only dropped 5 points each my 5th & 6th weekly taxol infusion, and only 1 point after my 7th weak-taxol infusion, so if my CA-125 starts to rise again, I'll be getting some additional imaging (CT/PET) that may help confirm whether we are on the right track. I see myself on Doxil by March, or by some crazy miracle, on a treatment break if it turns out this was just inflammation all along.
  • LPack
    LPack Member Posts: 645
    #6
    ?
    I can't really give much input, but again we are all so different. I too began a rise in CA125 after around 6-7 months NED. My onc/gyn immediately began chemo.

    Physical exam felt tumor on sigmoid junction, CT scans somewhat inclusive, PET scan not much better, chemo brought CA125 down into normal zone.

    Reaction to cisplatin, CA125 going up again (but normal) still not had chemo since reaction as blood count too low. But physical exam has been negative for few months!

    Hopefully will begin chemo Monday (carbo instead of cisp) and soon scans again.

    I am already mixed up, have I confused you, too!! ☺

    Living for Eternity,
    Libby
  • upsofloating
    upsofloating Member Posts: 466 Member
    #7
    my exp with ups and downs of test results
    I had completed carbo/taxol in june '08 with clean CT / ca125 in Aug 08. In Jan 09, CT showed enlarged groin lymph nodes as well CA 125 over 200. PET scan showed nodes lit up. Plan was to start Doxil. While going thru prep/port implant, etc., my doc leaves clinic and I change docs. A current CA125 for him is 22! Repeat CT scan shows nodes shrinking, "apparently responding well to treatment" LOL, no treatment underway.

    Since finding this site, I became aware of potential other causes of issues - I had a significant bladder infection just prior to Jan tests and CT - caused a lot of grief and stress when I could have been busy enjoying life. Unfortunately, by Sept 09, CA 125 again over 200 and CT/PET show 2 new enlarged para aorta nodes; prior groin nodes don't even show up. Oct biopsy of one node ( under CT) was +ve for UPSC. Just now starting Doxil as I was initially confused about these "here today, gone tomorrow" node enlargements. A repeat CT in Dec 09 did show the p-a nodes, unchanged from Oct though.

    Current gyn-onc does not think early '09 issues were a recurrence, particularly with no biopsy confirmation and spontaneous resolution.
  • Lisa13Q
    Lisa13Q Member Posts: 677
    #8
    upsofloating said:

    my exp with ups and downs of test results
    I had completed carbo/taxol in june '08 with clean CT / ca125 in Aug 08. In Jan 09, CT showed enlarged groin lymph nodes as well CA 125 over 200. PET scan showed nodes lit up. Plan was to start Doxil. While going thru prep/port implant, etc., my doc leaves clinic and I change docs. A current CA125 for him is 22! Repeat CT scan shows nodes shrinking, "apparently responding well to treatment" LOL, no treatment underway.

    Since finding this site, I became aware of potential other causes of issues - I had a significant bladder infection just prior to Jan tests and CT - caused a lot of grief and stress when I could have been busy enjoying life. Unfortunately, by Sept 09, CA 125 again over 200 and CT/PET show 2 new enlarged para aorta nodes; prior groin nodes don't even show up. Oct biopsy of one node ( under CT) was +ve for UPSC. Just now starting Doxil as I was initially confused about these "here today, gone tomorrow" node enlargements. A repeat CT in Dec 09 did show the p-a nodes, unchanged from Oct though.

    Current gyn-onc does not think early '09 issues were a recurrence, particularly with no biopsy confirmation and spontaneous resolution.

    Thanks upsolifting
    I think you are right. Today we got her CA-125 and it's low. I think sometimes they don't know. Your experience is helpful. I still have to get to the point where I am not living test to test because anything can happen in either direction. I am just not there yet.
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #9
    ct scan
    Hi,
    i know your Mom is being treated as Sloan. So am I. I had slow rising ca125 but still withing normal limits. I had a clean ct scan. My surgeon wanted a PET scan due to my ongoing bowel symptoms. My pet/ct was unclear. The ct scan showed nothing but the pet, done on the same day, showed one hotspot on my colon. A colonoscopy and biopsy confirmed it to be recurrent ovarian. Is your Mom scheduled to have a Pet? I am now on Doxil. Two doses thus far. Side effects are minimal-mostly fatigue. I have a repeat Pet after my 3rd infusion. My ca125 is still normal-maybe it won't be a good marker for me going forward or maybe my reoccurence is really small and its not reflected in the ca125 yet. My reoccurence measured 13mm on my transverse colon.
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #10
    lindaprocopio said:

    I am getting chemo after a VERY mixed-message diagnosis.
    I guess cancer treatment is much more an art than a science. In November I was 5 months in remission after my initial treatment protocol when I had a regular 3-month CA-125 drawn that showed a spike from a CA-125 of 11 to 155. I have a lot of infammation in my bowels from the radiation I had in May and June and my gyn-onc felt that inflammation was likely the cause of the spike in my CA-125. But my chemo-onc wasn't convinced and ordered a CT-scan that was initially reported to me as 'NED', but when the involved CT-technician called the radiologist's attention to a possible enlarged lymph node she saw during the scan, a second look was given to my CT-scan and there was enough of a question to call for a PET-scan. (The spike in the CA-125 factored into this decision.) The Pet-scan lit up 3 lymph nodes, but only 1 of them was in a place that could be biopsied in any way. Since, even if the 1 accessible lymph node came up as cancer-free, we still would be unable to know about the other 2 lymph nodes, so we decided to skip any biopsies, assume this is a recurrance, and start chemo again immediately. I was put on a mild dose of weekly taxol to 'hold' me until after Christmas when we thought I'd probably go on Doxil. But the taxol started lowering my CA-125 (currently at 49) and I have been on weekly taxol since. In this instance, my chemo-onc's opinion was given precidence over my gyn-onc's opinion, although I will say that my gyn-onc encourged the chemo after the PET-scan also. But it does show that 100% diagnosis without physical evidence is hard to get, and you have to just stay personally informed and trust that they know what they're doing.

    (BTW: my CA-125 only dropped 5 points each my 5th & 6th weekly taxol infusion, and only 1 point after my 7th weak-taxol infusion, so if my CA-125 starts to rise again, I'll be getting some additional imaging (CT/PET) that may help confirm whether we are on the right track. I see myself on Doxil by March, or by some crazy miracle, on a treatment break if it turns out this was just inflammation all along.

    A lovely head without hair
    May I say lindaprocopio that you look absolutely amazing without hair. You have a beautiful face, a lovely smile and a nice shaped head. Are you brave enough to leave your house "commando" so to speak?

    Tina xxxx
  • Lisa13Q
    Lisa13Q Member Posts: 677
    #11
    nancy591 said:

    ct scan
    Hi,
    i know your Mom is being treated as Sloan. So am I. I had slow rising ca125 but still withing normal limits. I had a clean ct scan. My surgeon wanted a PET scan due to my ongoing bowel symptoms. My pet/ct was unclear. The ct scan showed nothing but the pet, done on the same day, showed one hotspot on my colon. A colonoscopy and biopsy confirmed it to be recurrent ovarian. Is your Mom scheduled to have a Pet? I am now on Doxil. Two doses thus far. Side effects are minimal-mostly fatigue. I have a repeat Pet after my 3rd infusion. My ca125 is still normal-maybe it won't be a good marker for me going forward or maybe my reoccurence is really small and its not reflected in the ca125 yet. My reoccurence measured 13mm on my transverse colon.

    Hi Nancy
    They didn't do a PET scan on her, which I wonder about. Haven't been able to get through to the onc. I know she meets with the surgeon next wednesday. I'll let you know. She needs a break anyway...so..one day at a time.

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