UPSC (uterine pappilary serous carcinoma): once in remission, how does you doctor monitor your statu

evertheoptimist
evertheoptimist Member Posts: 140
edited March 2014 in Uterine/Endometrial Cancer #1
I have a question to UPSC patients who are currently in remission.

I just finished my first round of chemo (3 weekly sessions - dose dense regimen), and I am realistically optimistic that I will go into remission after the 6 rounds of chemo is over, because the test results (CA125) already show that the chemo is working very well, and I feel SO MUCH better. I have no side effects to chemo so far.

However, I understand that for the UPSC survivors, the real game starts after one goes into remission. We all know that the UPSC recurrence rate is very high even when it is caught at an earlier stage, and unlike other types of cancer, they tend to recur in distance places like lungs and brain etc.

So, those of you in remission, how does your doctor monitor your status for recurrence?

Similar type of cancer to UPSC would be Ovarian (thought UPSC is probably more serious disease). They monitor CA125 as a primary indicator to see whether there is potential recurrence). Pretty tame stuff. Once the CA125 number start to climb consistently they take proactive steps. How about UPSC? CA125 not a good/reliable marker as a recurrence detecting tool? For instance, I am reading about women in remission only to discover later that the cancer recurred in lungs and brains. How did their doctors miss UPSC recurrence that far gone? Were they watching CA125? Should they have been watching other indicators?

Given how aggressive UPSC is, shouldn't there be equally aggressive and proactive monitoring of UPSC for recurrence?

So, those UPSC ladies currently in remission, what is your doctor use as an early indicator of recurrence? If they suspect recurrent and catch early enough, what do they do? Start a second line chemo, etc?

(PS. radiation therapy is not an option for me in this round)

Comments

  • upsofloating
    upsofloating Member Posts: 466 Member
    #2
    Usually, f/u exams every 3
    Usually, f/u exams every 3 months with ca125 test and monitor with CT, PET, or combo scan every 3-6 months, watch for any new/unusual symptoms. This is the hard part with the expectation the disease will recur. Many do experience long remission(s) so keep with the optimistic viewpoint ;-)
    Annie
  • evertheoptimist
    evertheoptimist Member Posts: 140
    #3
    upsofloating said:

    Usually, f/u exams every 3
    Usually, f/u exams every 3 months with ca125 test and monitor with CT, PET, or combo scan every 3-6 months, watch for any new/unusual symptoms. This is the hard part with the expectation the disease will recur. Many do experience long remission(s) so keep with the optimistic viewpoint ;-)
    Annie

    Even with every 3 month CT
    Even with every 3 month CT or PET scan, can a distance met (lungs etc) happen so fast that they don't catch it earlier? I read stories of women who recurred in hugs and brain. How could this be, while they were under surveillance, so to speak?
  • upsofloating
    upsofloating Member Posts: 466 Member
    #4
    evertheoptimist said:

    Even with every 3 month CT
    Even with every 3 month CT or PET scan, can a distance met (lungs etc) happen so fast that they don't catch it earlier? I read stories of women who recurred in hugs and brain. How could this be, while they were under surveillance, so to speak?

    Some cells can be resistant
    Some cells can be resistant to chemo or just its effects. Unfortunately there is no magic here. Research is needed to find a better monitor for presence of active cancer. One also hopes one's immune system can control some of this but if it is compromised it can likewise be ineffective. Once there is a recurrence it is assumed there will always be some stray cells, somewhere, so vigilance is important. You sound like someone who is healthy, fit, and ready for whatever battles come your way.
    btw, I was stage IVb as well.
    Sorry we have to meet this way, wishing you every success with the treatments.
    Annie
  • evertheoptimist
    evertheoptimist Member Posts: 140
    #5
    upsofloating said:

    Some cells can be resistant
    Some cells can be resistant to chemo or just its effects. Unfortunately there is no magic here. Research is needed to find a better monitor for presence of active cancer. One also hopes one's immune system can control some of this but if it is compromised it can likewise be ineffective. Once there is a recurrence it is assumed there will always be some stray cells, somewhere, so vigilance is important. You sound like someone who is healthy, fit, and ready for whatever battles come your way.
    btw, I was stage IVb as well.
    Sorry we have to meet this way, wishing you every success with the treatments.
    Annie

    Annie,
    thanks for the
    Annie,

    thanks for the clarification. You and I, let's make a deal. We will outlive all the healthy doom and gloom acolytes. there are those around, you know!
  • upsofloating
    upsofloating Member Posts: 466 Member
    #6
    evertheoptimist said:

    Annie,
    thanks for the
    Annie,

    thanks for the clarification. You and I, let's make a deal. We will outlive all the healthy doom and gloom acolytes. there are those around, you know!

    it's a deal!
    I'm definitely in for that one. Currently enjoying a remission and 2011 is going to be a great year! My gyn-onc told me he can no longer consider stats in my treatment plans - according to them I should already be dead - still breathing and more ;-)
    Here' s to us!
    Annie
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #7
    upsofloating said:

    it's a deal!
    I'm definitely in for that one. Currently enjoying a remission and 2011 is going to be a great year! My gyn-onc told me he can no longer consider stats in my treatment plans - according to them I should already be dead - still breathing and more ;-)
    Here' s to us!
    Annie

    optimist
    I just finished treatment for recurrence in supraclavicular lymph nodes. My original treatment with 6 rounds of carbo/taxol was complete in mid Feb 2009. My doc's monitoring protocol includes monitoring CA125 (every 6 weeks) and physical exams ( every 3-4 months). He watches the trend of CA125 which seems to be a good indicator for me. He also told me that I would be the best indicator of recurrence and told me to alert him if I had any change that lasted 2 weeks or more - e.g. pain, lump, etc.

    I actually found the lump in my neck in May 2010 but CA 125 was rising by then- we agreed to have it biopsied - it was positive for upsc - and then watched it till Sept when CA125 continued to rise and PET ordered showing high uptake in same nodes in neck. I just completed 7 weeks of combo - chemo and radiation - which successfully eliminated the cancer in the neck nodes. I'm back to surveillance.

    I have great confidence in my doc and others that he has referred me to. My doc uses the NCCN guidelines for treatment and monitoring - you can check the website and see what the standard is for treatment and surveillance for your stage and situation. I'd be interested to know what protocol your doc uses.

    Best wishes. Mary Ann
  • Sara Zipora
    Sara Zipora Member Posts: 231
    #8
    UPSC in Remission
    Hi, been away from list, welcome EverO from a relative newbe. I was Dx in July operated July 15,( no previous symptoms at all), as Stage IV B, Grade III, Adenocarcinoma Undifferentiated Clear Type. Just finished 4 rounds Taxol, weekly with 4 Carbo every three weeks, then Two rounds every four weeks Doxil and Carbo for the 'magic' six rounds of Chemo. Ca 125 went down from 94 pre surgery, to 84 post and pre Chemo, now Thank God, 6.4.
    Anyway, I was wondering why they don't use, whilst in remission, Beta hCG test which, if one isn't pregnant, shows rapid cell proliferation in abdominal area. Does anyone know?

    Good luck, prayers and hugs to all the warriorettes!

    Sara Zipora
  • nancygt
    nancygt Member Posts: 86
    #9
    monitoring and recurrence
    Surgery 12/08 followed by sandwich protocol (Carbop/tax x3, external radiation, brachytherapy, chemo x 3). We set up CA 125 every 3 months with CT scan scvheduled for 6 months.CA 125 appears to be good marker for me as post chemo it went down to 9 (steady drops from 500 to 9. I was so proud of that single digit.First post treatment okay at 20 but doc said lets hope it does not double again.Before next test and scan I was having GI tract and urinary problems=onc out of toen and radiation oncologist decided to push up scab. Sure enough it was in peri-aortic lymph nodes and CA 125 up to 179.After IMRT to those tumors, I had NED PET scan and we decided to increase frequency of CA 125 to 60 days.It was at 50 and he doubted it would go any lower. By 4 months out, it was 100 and we scheduled scans.
    We waited until this month to start Cisplatin and Adriamycin due to the drug shortages-he was willing to start Doxil but I had not seen a lot of success with that and I wantred the big guns.
    First CA 125 typically starts to rise in advance of tumors showing up. If you test too often it can drive you crazy. I will probably go back to 3 months after this treatment. Also certain drugs need for the cancer to be somewhat active so doc is not likely to start treatment on rising CA only. And my docs have said some fluctuation is okay but usually doubling effect causes concern.
    I suppose every 6 months on scans is reasonable to me too- now if I can just go 6 months. Actually I am hopeful about this drug combo and feel it is the one that can give me a long remission. I have also learned that sometimes not knowing is okay and that surprises me. I haven't even called to get the results of my baseline for chemo CA 125 and I have not seen a test since late Oct. Part of it is facing 6 months of treatment with quiet confidence the drug will work- I know the little bugger has been growing but now we are fighting back.
    OIne thing I did find with my PET scans.The first recurrence was confirmed and then we had to do baseline PET for the IMRT treatment -my lovely radiation oncologist even ate the cost because he knew they would not pay after only 5 weeks.But it did surprise me both the SUV rate and tumor sizes had doubled in 5 weeks. I scurried off to M.D.Anderson for my second opinion and we qucikly started treatment. Like you, nothing earth shattering in the second opinion but I like having a doctor there on the team and plan to go back before the 2 years is up to keep her involvement. On the most recent 2 PET scans (Nov and Jan) the SUV was a little lower on the most recent one but the handful of tumors at the base of the lung was now up to 20, although none very large.I guess that what I am getting at is have a game plan you are comfortable with for monitoring, maintain your hope as the longer the remission the better the odds and be prepared to roll with the punches. Like many on here, I know my prognosis is not great but I still feel hopeful but better geared to understand what chronic cancer is and how you cope.
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #10
    nancygt said:

    monitoring and recurrence
    Surgery 12/08 followed by sandwich protocol (Carbop/tax x3, external radiation, brachytherapy, chemo x 3). We set up CA 125 every 3 months with CT scan scvheduled for 6 months.CA 125 appears to be good marker for me as post chemo it went down to 9 (steady drops from 500 to 9. I was so proud of that single digit.First post treatment okay at 20 but doc said lets hope it does not double again.Before next test and scan I was having GI tract and urinary problems=onc out of toen and radiation oncologist decided to push up scab. Sure enough it was in peri-aortic lymph nodes and CA 125 up to 179.After IMRT to those tumors, I had NED PET scan and we decided to increase frequency of CA 125 to 60 days.It was at 50 and he doubted it would go any lower. By 4 months out, it was 100 and we scheduled scans.
    We waited until this month to start Cisplatin and Adriamycin due to the drug shortages-he was willing to start Doxil but I had not seen a lot of success with that and I wantred the big guns.
    First CA 125 typically starts to rise in advance of tumors showing up. If you test too often it can drive you crazy. I will probably go back to 3 months after this treatment. Also certain drugs need for the cancer to be somewhat active so doc is not likely to start treatment on rising CA only. And my docs have said some fluctuation is okay but usually doubling effect causes concern.
    I suppose every 6 months on scans is reasonable to me too- now if I can just go 6 months. Actually I am hopeful about this drug combo and feel it is the one that can give me a long remission. I have also learned that sometimes not knowing is okay and that surprises me. I haven't even called to get the results of my baseline for chemo CA 125 and I have not seen a test since late Oct. Part of it is facing 6 months of treatment with quiet confidence the drug will work- I know the little bugger has been growing but now we are fighting back.
    OIne thing I did find with my PET scans.The first recurrence was confirmed and then we had to do baseline PET for the IMRT treatment -my lovely radiation oncologist even ate the cost because he knew they would not pay after only 5 weeks.But it did surprise me both the SUV rate and tumor sizes had doubled in 5 weeks. I scurried off to M.D.Anderson for my second opinion and we qucikly started treatment. Like you, nothing earth shattering in the second opinion but I like having a doctor there on the team and plan to go back before the 2 years is up to keep her involvement. On the most recent 2 PET scans (Nov and Jan) the SUV was a little lower on the most recent one but the handful of tumors at the base of the lung was now up to 20, although none very large.I guess that what I am getting at is have a game plan you are comfortable with for monitoring, maintain your hope as the longer the remission the better the odds and be prepared to roll with the punches. Like many on here, I know my prognosis is not great but I still feel hopeful but better geared to understand what chronic cancer is and how you cope.

    good attitude, Nancy
    I think you have an amazing attitude. Like you I have stopped micromanaging and worrying about the CA125. Told my doc that I don't want to know numbers unless I need to know - his call. I have to have faith and not be the worry wart I was.

    Stay positive and hopeful, I like the info and optimism I'm reading lately.

    Blessings. Mary Ann

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