Cancer cells in urine

2

Comments

  • davevg
    davevg Member Posts: 114
    #22
    Tethys41 said:

    I'm under the impression...
    I'm under the impression that most people with cancer have caner cells in their blood, even after treatment ends. So, if there is blood in her urine, there would also likely be cancer cells. Sure, it is important to find the source of the blood, but the cancer cells could just be carried into the urine with the blood.

    Putting this question on my list Tethys41
    We see him Tuesday. Thanks for the response Tethys41.
  • tmpage1273
    tmpage1273 Member Posts: 92 Member
    #23
    davevg said:

    Putting this question on my list Tethys41
    We see him Tuesday. Thanks for the response Tethys41.

    please let us know.........
    ........what you find out today. You're both in my prayers.
  • antcat
    antcat Member Posts: 270
    #24
    Sorry
    I'm sorry to hear about your wife. I know what it's like when a CA 125 is low and then there's the dread cancer may be back. I wish drs. didn't use that marker because my marker went down 6 points a couple of months ago despite a CT scan showing progressing. Anyway, I hope everything goes good with your wife and I pray for her.
  • davevg
    davevg Member Posts: 114
    #25
    antcat said:

    Sorry
    I'm sorry to hear about your wife. I know what it's like when a CA 125 is low and then there's the dread cancer may be back. I wish drs. didn't use that marker because my marker went down 6 points a couple of months ago despite a CT scan showing progressing. Anyway, I hope everything goes good with your wife and I pray for her.

    Dased and Confused
    We did not find out much other than the bladder biopsies came back negative. He could not find any report on the urin sample from the uroligest the other week. They did another urine sample anyway so we should find out about that today or tomorrow. Ovarian Cancer cells in the urine is very rare according the Dr. He is at a loss at the this point in time as to where they are originating from but he assured us that we'll get to the bottom of it. He did say another way they could have made it in her urine is through the blood she was passing and if I heard him right he is not ruling out the limphatic system but even these systems still needs an orgin though. These two sanareios would not be good at all as it could spread anywhere and everywhere. For now he said go get your treatment and see ya in three weeks and we'll talk about scans things more in depth and set up a scan to try and figure out where to go from here he said. Bottom line the chemo is not working completely. He mentioned sending her to Johns Hopkins being that we went there for a second opinion and are in there system. I was thinking Sloan guess we'll see.

    Prayers to everyone.

    Dave VG
  • mopar
    mopar Member Posts: 1,972 Member
    #26
    davevg said:

    Dased and Confused
    We did not find out much other than the bladder biopsies came back negative. He could not find any report on the urin sample from the uroligest the other week. They did another urine sample anyway so we should find out about that today or tomorrow. Ovarian Cancer cells in the urine is very rare according the Dr. He is at a loss at the this point in time as to where they are originating from but he assured us that we'll get to the bottom of it. He did say another way they could have made it in her urine is through the blood she was passing and if I heard him right he is not ruling out the limphatic system but even these systems still needs an orgin though. These two sanareios would not be good at all as it could spread anywhere and everywhere. For now he said go get your treatment and see ya in three weeks and we'll talk about scans things more in depth and set up a scan to try and figure out where to go from here he said. Bottom line the chemo is not working completely. He mentioned sending her to Johns Hopkins being that we went there for a second opinion and are in there system. I was thinking Sloan guess we'll see.

    Prayers to everyone.

    Dave VG

    THANK YOU FOR POSTING, DAVE
    I've been checking almost hourly to see if there was any word. It sounds as though you are still 'up in the air', 'dazed' as you put it, and rightfully so. I know you had hoped for some definitive answers... and the waiting continues. Your wife (and you) must be so exhausted from this merry-go-round. That is very good news that the bladder is negative - I'm so glad to hear that. But now I know you have other hurdles to surpass. And 'waiting' another three weeks is torture. wish they could have set up a scan in the meantime instead of waiting.

    You and your wife continue to be in my thoughts and prayers, Dave. May you find the strength and hope you need continue from moment to moment, day to day. Send prayers that you WILL find strength and peace through all of this.

    Monika
  • carolenk
    carolenk Member Posts: 907 Member
    #27
    mopar said:

    THANK YOU FOR POSTING, DAVE
    I've been checking almost hourly to see if there was any word. It sounds as though you are still 'up in the air', 'dazed' as you put it, and rightfully so. I know you had hoped for some definitive answers... and the waiting continues. Your wife (and you) must be so exhausted from this merry-go-round. That is very good news that the bladder is negative - I'm so glad to hear that. But now I know you have other hurdles to surpass. And 'waiting' another three weeks is torture. wish they could have set up a scan in the meantime instead of waiting.

    You and your wife continue to be in my thoughts and prayers, Dave. May you find the strength and hope you need continue from moment to moment, day to day. Send prayers that you WILL find strength and peace through all of this.

    Monika

    Your wife's situation
    Your wife's situation typifies the current mindset that ovarian cancer is a "local disease" when it is probably a systemic disease from the beginning. Even when there is a low CA-125 number and scans show "no evidence of disease," microscopic cancer cells can still be circulating in the blood & lymph.

    The "systemic disease" paradigm is the opinion of those who do integrative and natural medicine. The Greece blood test (done for chemo sensitivity/resistance) cultures cancer cells from a blood sample. They can find cancer cells in the blood of people who are otherwise declared NED.

    I think Tethys already mentioned that the ovarian cancer cells got into the urine just because there was blood in the urine. I think she is right. I reckon if I had blood in my urine, I would test positive for ovarian cancer cells, too.

    I would not think that your wife's chemo isn't working just because ovarian cancer cells were found in her urine. If there are other indicators (such as rising CA-125 or disease progression on scan) that the chemo isn't working, then that is a valid assumption.

    In my opinion, your wife was subjected to additional and unnecessary medical treatment AND both of you went thru additional worry because someone decided to look for ovarian cancer cellsin her urine. But what do I know? That's just my opinion, and I am full of them.
  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #28
    carolenk said:

    Your wife's situation
    Your wife's situation typifies the current mindset that ovarian cancer is a "local disease" when it is probably a systemic disease from the beginning. Even when there is a low CA-125 number and scans show "no evidence of disease," microscopic cancer cells can still be circulating in the blood & lymph.

    The "systemic disease" paradigm is the opinion of those who do integrative and natural medicine. The Greece blood test (done for chemo sensitivity/resistance) cultures cancer cells from a blood sample. They can find cancer cells in the blood of people who are otherwise declared NED.

    I think Tethys already mentioned that the ovarian cancer cells got into the urine just because there was blood in the urine. I think she is right. I reckon if I had blood in my urine, I would test positive for ovarian cancer cells, too.

    I would not think that your wife's chemo isn't working just because ovarian cancer cells were found in her urine. If there are other indicators (such as rising CA-125 or disease progression on scan) that the chemo isn't working, then that is a valid assumption.

    In my opinion, your wife was subjected to additional and unnecessary medical treatment AND both of you went thru additional worry because someone decided to look for ovarian cancer cellsin her urine. But what do I know? That's just my opinion, and I am full of them.

    I'm with you on this
    CarolenK, there's not doubt there would be ovarian cancer cells in a patient's blood. I'm pretty surprised this has turned out to be such a quandry for her doctors.
  • davevg
    davevg Member Posts: 114
    #29
    Tethys41 said:

    I'm with you on this
    CarolenK, there's not doubt there would be ovarian cancer cells in a patient's blood. I'm pretty surprised this has turned out to be such a quandry for her doctors.

    A little confused here
    Ok... so your what you are saying and I'm trying to understand and not being sarcastic here is that with a CA125 at 6.5 and tumors shrinking there would still be live cancer cells in the blood. Where are they coming from?? According to him and maybe I'm the one mis quoting him there has to be an origin for the cells to be in the blood or lymph system.

    Dave VG
  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #30
    davevg said:

    A little confused here
    Ok... so your what you are saying and I'm trying to understand and not being sarcastic here is that with a CA125 at 6.5 and tumors shrinking there would still be live cancer cells in the blood. Where are they coming from?? According to him and maybe I'm the one mis quoting him there has to be an origin for the cells to be in the blood or lymph system.

    Dave VG

    Chemo does not kill all of
    Chemo does not kill all of the cancer cells. This is why there are so many recurrances. If the organ (ovaries) are gone, and if chemo killed all the cancer cells, no one would have a recurrance of ovarian cancer. I've even read a statistic stating that chemo tends to kill only 70 to 80% of cancer cells. It is up to the body to take care of the rest. That's why it is so important to continue supporting the immune system and keeping the body clean even after chemo. Taxol is known for causing cancer cells to slough off of the tumor during treatment and that is why they are seeing more cases of mets to the brain. So, yes even with low CA-125 and no indication of disease on her scans, there are still cancer cells. I had a blood test, similar to the one CarolenK mentions from Greece, that was supposed to test for sensitivities of cancer cells extracted from my blood with regard to chemo and integrative therapies, like IV vitamin C. This was 5 months after my last chemo, and I was considered NED. Remarkably, they could not find any cancer cells in my blood, but both my practitioner and the lab in Germany expected that there would be some.
  • carolenk
    carolenk Member Posts: 907 Member
    #31
    Tethys41 said:

    Chemo does not kill all of
    Chemo does not kill all of the cancer cells. This is why there are so many recurrances. If the organ (ovaries) are gone, and if chemo killed all the cancer cells, no one would have a recurrance of ovarian cancer. I've even read a statistic stating that chemo tends to kill only 70 to 80% of cancer cells. It is up to the body to take care of the rest. That's why it is so important to continue supporting the immune system and keeping the body clean even after chemo. Taxol is known for causing cancer cells to slough off of the tumor during treatment and that is why they are seeing more cases of mets to the brain. So, yes even with low CA-125 and no indication of disease on her scans, there are still cancer cells. I had a blood test, similar to the one CarolenK mentions from Greece, that was supposed to test for sensitivities of cancer cells extracted from my blood with regard to chemo and integrative therapies, like IV vitamin C. This was 5 months after my last chemo, and I was considered NED. Remarkably, they could not find any cancer cells in my blood, but both my practitioner and the lab in Germany expected that there would be some.

    I agree with Tethys
    I think Greg (gdpawel) posted the information about taxol blasting cancer all over the place.

    Not convinced? Why do you think some women are on "maintenance" therapy? Usually using Taxol or Avastin for about a year. These are women who are declared NED who have low CA-125 levels.

    There's the theory about cancer stem cells--supposedly the cancer stem cells are not killed by chemo. The cancer stem cells are probably influenced by the "micro-environment." The cancer stem cells produce "daughter cells" who mututate & become chemo resistant.

    I think most gyn-oncologist agree that ovarian cancer is not a homogenous type of cancer. Some of the daughter cancer cells are susceptible to some chemo & other daughter cancer cells are susceptible to other chemo.

    Ovarian cancer is a really complicated disease & there is still a lot unknown about it--until more is understood, more of us will die from it. Thank God it is considered to be a rare disease but that's also why we lag behind in the research funding, too.
  • JoWin615
    JoWin615 Member Posts: 150 Member
    #32
    carolenk said:

    I agree with Tethys
    I think Greg (gdpawel) posted the information about taxol blasting cancer all over the place.

    Not convinced? Why do you think some women are on "maintenance" therapy? Usually using Taxol or Avastin for about a year. These are women who are declared NED who have low CA-125 levels.

    There's the theory about cancer stem cells--supposedly the cancer stem cells are not killed by chemo. The cancer stem cells are probably influenced by the "micro-environment." The cancer stem cells produce "daughter cells" who mututate & become chemo resistant.

    I think most gyn-oncologist agree that ovarian cancer is not a homogenous type of cancer. Some of the daughter cancer cells are susceptible to some chemo & other daughter cancer cells are susceptible to other chemo.

    Ovarian cancer is a really complicated disease & there is still a lot unknown about it--until more is understood, more of us will die from it. Thank God it is considered to be a rare disease but that's also why we lag behind in the research funding, too.

    Wow.
    I just read this whole thread, and it is fascinating. I don't really have anything to add, except to say that if Tethys and Carolenk got together and gave an ovarian cancer workshop somewhere, I would sure as heck sign up!

    Cheers, Jo
  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #33
    JoWin615 said:

    Wow.
    I just read this whole thread, and it is fascinating. I don't really have anything to add, except to say that if Tethys and Carolenk got together and gave an ovarian cancer workshop somewhere, I would sure as heck sign up!

    Cheers, Jo

    Hhhmmmm
    What do you think, CarolenK?
  • carolenk
    carolenk Member Posts: 907 Member
    #34
    Tethys41 said:

    Hhhmmmm
    What do you think, CarolenK?

    I am not up for putting on a
    I am not up for putting on a workshop at this time. It would probably be a different story once I get my situation stabilized. Maybe Tethys naturopath could be recruited--she's the one who is a long-term OVCA survivor!
  • davevg
    davevg Member Posts: 114
    #35
    carolenk said:

    I am not up for putting on a
    I am not up for putting on a workshop at this time. It would probably be a different story once I get my situation stabilized. Maybe Tethys naturopath could be recruited--she's the one who is a long-term OVCA survivor!

    I couldn't agree more
    And thank you ladies. Very good info lots to digest.

    Prayers to all

    Dave vg
  • kayandok
    kayandok Member Posts: 1,202 Member
    #36
    davevg said:

    I couldn't agree more
    And thank you ladies. Very good info lots to digest.

    Prayers to all

    Dave vg

    Dave,
    I have no insight about this subject, but do know for sure that you are an AMAZING husband! Together you and your wife will clear this hurdle.
    Praying for strength and wisdom for both of
    you.
    Warm hugs,
    Kathleen
  • davevg
    davevg Member Posts: 114
    #37
    kayandok said:

    Dave,
    I have no insight about this subject, but do know for sure that you are an AMAZING husband! Together you and your wife will clear this hurdle.
    Praying for strength and wisdom for both of
    you.
    Warm hugs,
    Kathleen

    Kathleen thank you for the kind words
    You know those words in sickness and in health... I took them very seriously 30 years ago this April. I'm trying my damdist with this disease but it just seems like I'm spinning my wheels. When I look at my wife I cannot imagine my life without her. All the other hurdles in life up to this one have paled in comparison and there have been some big hurdles. But those we faced together equally. This one is so lopsided to the point I can't even imagine how she feels or any of you fighting this monster and I think that is what is eating at me the most. I'm always up beat for her encouraging her that there is a lot of things treatment wise but I can tell as of late she knows better. I check the news every day believe it or not hoping for some amazing breakthrough in the fight against cancer. I'm beaten down but not down and out and still have plenty of hope but I can see that hope fading in my wife's eyes as time goes by. Thank you all for listening to my wining. I know you all have your own fights going on.

    Prayers to you all

    Dave VG
  • kayandok
    kayandok Member Posts: 1,202 Member
    #38
    davevg said:

    Kathleen thank you for the kind words
    You know those words in sickness and in health... I took them very seriously 30 years ago this April. I'm trying my damdist with this disease but it just seems like I'm spinning my wheels. When I look at my wife I cannot imagine my life without her. All the other hurdles in life up to this one have paled in comparison and there have been some big hurdles. But those we faced together equally. This one is so lopsided to the point I can't even imagine how she feels or any of you fighting this monster and I think that is what is eating at me the most. I'm always up beat for her encouraging her that there is a lot of things treatment wise but I can tell as of late she knows better. I check the news every day believe it or not hoping for some amazing breakthrough in the fight against cancer. I'm beaten down but not down and out and still have plenty of hope but I can see that hope fading in my wife's eyes as time goes by. Thank you all for listening to my wining. I know you all have your own fights going on.

    Prayers to you all

    Dave VG

    Dave,
    my husband has said many times all that you have articulated so well, in your post. All the other hurdles you have cleared, in the past, was just training to fight this battle, and you will come through. I say that after going through a lot of tough things together, AND a killer almost 5-year battle! I know I would have thrown in the towel a long time ago, if it hadn't been for my amazing husband never giving up, and always encouraging me.
    Whine away anytime. That is what this board is for.
    kathleen
  • undertreatment2012
    undertreatment2012 Member Posts: 126
    #39
    carolenk said:

    I agree with Tethys
    I think Greg (gdpawel) posted the information about taxol blasting cancer all over the place.

    Not convinced? Why do you think some women are on "maintenance" therapy? Usually using Taxol or Avastin for about a year. These are women who are declared NED who have low CA-125 levels.

    There's the theory about cancer stem cells--supposedly the cancer stem cells are not killed by chemo. The cancer stem cells are probably influenced by the "micro-environment." The cancer stem cells produce "daughter cells" who mututate & become chemo resistant.

    I think most gyn-oncologist agree that ovarian cancer is not a homogenous type of cancer. Some of the daughter cancer cells are susceptible to some chemo & other daughter cancer cells are susceptible to other chemo.

    Ovarian cancer is a really complicated disease & there is still a lot unknown about it--until more is understood, more of us will die from it. Thank God it is considered to be a rare disease but that's also why we lag behind in the research funding, too.

    dear carolenk
    how long have you had this awful disease? You are extremely informative and tell it without the sugar coating. That's what I like. I have read this year 22,000 will be diagnosed and 15,000 will die. Not good odds. Which is why when people get excited about my ca-125 coming down from 236 to 119 after one treatment, I can't partake in their excitement. Anyway, love reading your posts and insights.
  • carolenk
    carolenk Member Posts: 907 Member
    #40
    undertreatment2012 said:

    dear carolenk
    how long have you had this awful disease? You are extremely informative and tell it without the sugar coating. That's what I like. I have read this year 22,000 will be diagnosed and 15,000 will die. Not good odds. Which is why when people get excited about my ca-125 coming down from 236 to 119 after one treatment, I can't partake in their excitement. Anyway, love reading your posts and insights.

    Get excited!
    undertreatment

    Thanks for the appreciation. I know the ACS doesn't want us giving out advice so I hope I don't get asked to leave the discussion board for some of the things I write. : ) I try to write from my own experience & make sure it's clear when I am just expressing my opinion.

    Boy, I would get excited if I had your CA-125 number--I tend to make a lot of CA-125 and I was diagnosed around Labor Day (late summer) 2010. I had a rough start and didn't turn the corner until a C. diff infection was diagnosed & treated. The cancer went into an indolent phase during the Spring of 2011 (the CA-125 was very low but the scan wasn't NED) but then the CA-125 started rising again.

    I am back on chemo now using carbo/Gemzar & not seeing the same response that I did with the first-line chemo. That's kind of typical.

    I know Maria (Mwee) has been on carbo, then cisplatin w/Gemzar for maybe a year or more and is not complaining too much. Maybe she is too exhausted to complain. Gemzar just wipes me out!

    I know how you feel and the info about clear cell on the Internet is depressing. I do believe there is a lot of outdated info online & there are certainly women on this discussion board with clear cell who are NED.

    I wish Dave would get back on here and update us on his wife's situation.
  • Mwee
    Mwee Member Posts: 1,338
    #41
    carolenk said:

    Get excited!
    undertreatment

    Thanks for the appreciation. I know the ACS doesn't want us giving out advice so I hope I don't get asked to leave the discussion board for some of the things I write. : ) I try to write from my own experience & make sure it's clear when I am just expressing my opinion.

    Boy, I would get excited if I had your CA-125 number--I tend to make a lot of CA-125 and I was diagnosed around Labor Day (late summer) 2010. I had a rough start and didn't turn the corner until a C. diff infection was diagnosed & treated. The cancer went into an indolent phase during the Spring of 2011 (the CA-125 was very low but the scan wasn't NED) but then the CA-125 started rising again.

    I am back on chemo now using carbo/Gemzar & not seeing the same response that I did with the first-line chemo. That's kind of typical.

    I know Maria (Mwee) has been on carbo, then cisplatin w/Gemzar for maybe a year or more and is not complaining too much. Maybe she is too exhausted to complain. Gemzar just wipes me out!

    I know how you feel and the info about clear cell on the Internet is depressing. I do believe there is a lot of outdated info online & there are certainly women on this discussion board with clear cell who are NED.

    I wish Dave would get back on here and update us on his wife's situation.

    I'm glad to hear that you don't think I complain
    too much :).... my husband might disagree (just kidding). I've been chemoing now for 28 months and on the carbo/then cisplatin w/ gemzar for a year and a half. The gemzar does wipe me out also. This just seems to be my fate. The chemo is keeping me stable and reduced my tumors by 2/3 so.... as my ONC says " I just keep trucking".
    (((HUGS))) Maria

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