Chances of recurrence with clear cell

pjdreams
pjdreams Member Posts: 77
edited March 2014 in Ovarian Cancer #1
Looking for information on clear cell. I was diagnosed in Aug 2009 with Stage 1A, grade 2 clear cell carcinoma. Had 2 surgeries and the usual 6 rounds of carbo/taxol. Finished chemo in January and my PET/CT scans (2 of them) have been negative so far. CA-125 is down to 7. Things are great, right ? Or are they ? How concerned should I be about the clear cell and recurrence ?

I've read that clear cell is very aggressive and has a high rate of recurrence, no matter what stage.

Does anyone out there have experience with this ?

Comments

  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #2
    Ahh, sweetie, you don't wanna be torturing yourself with this!
    It breaks my heart to see anyone who is in remission wasting this precious time worrying about recurrence. ((((Hugs)))). Lucky lucky (SO lucky!!) that you caught your cancer so incredibly early! Unfortunate that the cell type is aggressive, but it is what it is.

    But, I think any of the wonderful ladies here will back me up on this, there is nothing for you in trying to guess what might happen down the road. When I got my grade diagnosis (papillary serous cell type, a Grade 3 aggressive monster), I put my affairs in order and worked with a tax advisor and estate planner to secure my business for my family after my death; and I had the stones in my good jewelry checked and cleaned and packed it all away with little cards for those I wanted to get each piece. I upped the grandkid's college accounts; and wrote notes and put money in birthday cards for them for each year until they turn 18. I sorted out the family heirloomss and started giving them away to my sons each time I saw them; and filled an under-the-bed storage chest with things I want my grandchildren to have.

    And when everything was tidied up, I put death and recurrence out of my mind. My cancer HAS come back, TWICE, after my 2 remissions. But DURING those 2 remissions I NEVER tortured myself with worry about when the cancer will return again. Remission IS life, as good as it gets! Sure, you can look up the statistics. But, why? You aren't a statistic! Who falls on which side of the percentages is a crap shoot, an 'un-knowable'. I lived in my remissions as if my cancer would NEVER return and allowed myself that joy and relief and REST from the worry of cancer. I'm telling you from my experience that it is better to believe you are cured and have your heart broken again if you recur, than it is to waste the joy of remission worrying. Turn your face to the sun and laugh and be happy! Don't do this to yourself. (((Hugs))))
  • Unknown
    Unknown
    #3
    lindaprocopio said:

    Ahh, sweetie, you don't wanna be torturing yourself with this!
    It breaks my heart to see anyone who is in remission wasting this precious time worrying about recurrence. ((((Hugs)))). Lucky lucky (SO lucky!!) that you caught your cancer so incredibly early! Unfortunate that the cell type is aggressive, but it is what it is.

    But, I think any of the wonderful ladies here will back me up on this, there is nothing for you in trying to guess what might happen down the road. When I got my grade diagnosis (papillary serous cell type, a Grade 3 aggressive monster), I put my affairs in order and worked with a tax advisor and estate planner to secure my business for my family after my death; and I had the stones in my good jewelry checked and cleaned and packed it all away with little cards for those I wanted to get each piece. I upped the grandkid's college accounts; and wrote notes and put money in birthday cards for them for each year until they turn 18. I sorted out the family heirloomss and started giving them away to my sons each time I saw them; and filled an under-the-bed storage chest with things I want my grandchildren to have.

    And when everything was tidied up, I put death and recurrence out of my mind. My cancer HAS come back, TWICE, after my 2 remissions. But DURING those 2 remissions I NEVER tortured myself with worry about when the cancer will return again. Remission IS life, as good as it gets! Sure, you can look up the statistics. But, why? You aren't a statistic! Who falls on which side of the percentages is a crap shoot, an 'un-knowable'. I lived in my remissions as if my cancer would NEVER return and allowed myself that joy and relief and REST from the worry of cancer. I'm telling you from my experience that it is better to believe you are cured and have your heart broken again if you recur, than it is to waste the joy of remission worrying. Turn your face to the sun and laugh and be happy! Don't do this to yourself. (((Hugs))))

    This comment has been removed by the Moderator
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #4
    lindaprocopio said:

    Ahh, sweetie, you don't wanna be torturing yourself with this!
    It breaks my heart to see anyone who is in remission wasting this precious time worrying about recurrence. ((((Hugs)))). Lucky lucky (SO lucky!!) that you caught your cancer so incredibly early! Unfortunate that the cell type is aggressive, but it is what it is.

    But, I think any of the wonderful ladies here will back me up on this, there is nothing for you in trying to guess what might happen down the road. When I got my grade diagnosis (papillary serous cell type, a Grade 3 aggressive monster), I put my affairs in order and worked with a tax advisor and estate planner to secure my business for my family after my death; and I had the stones in my good jewelry checked and cleaned and packed it all away with little cards for those I wanted to get each piece. I upped the grandkid's college accounts; and wrote notes and put money in birthday cards for them for each year until they turn 18. I sorted out the family heirloomss and started giving them away to my sons each time I saw them; and filled an under-the-bed storage chest with things I want my grandchildren to have.

    And when everything was tidied up, I put death and recurrence out of my mind. My cancer HAS come back, TWICE, after my 2 remissions. But DURING those 2 remissions I NEVER tortured myself with worry about when the cancer will return again. Remission IS life, as good as it gets! Sure, you can look up the statistics. But, why? You aren't a statistic! Who falls on which side of the percentages is a crap shoot, an 'un-knowable'. I lived in my remissions as if my cancer would NEVER return and allowed myself that joy and relief and REST from the worry of cancer. I'm telling you from my experience that it is better to believe you are cured and have your heart broken again if you recur, than it is to waste the joy of remission worrying. Turn your face to the sun and laugh and be happy! Don't do this to yourself. (((Hugs))))

    Linda
    Linda what a lovely lovely story that you have managed to put your affairs in order and have had the chance to decided what to give to your children and grandchildren. This must have been a really hard but rewarding task.

    I think you are an incrediable woman and I take onboard your strength and one day will do the same with my affairs - just not yet.

    Tina xx
  • msfanciful
    msfanciful Member Posts: 559
    #5
    I would definitely enjoy my
    I would definitely enjoy my remission.

    For me when it comes back or not (which it has at 3 times now), I would rather use each precious moment to live life to the fullest rather than saying I wish I could've or should've.

    So again congratulations to you.

    Wishing you the best,


    Sharon
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #6
    I agree with Linda
    I know it is easier said then done. I worry all the time. I worried before I had a recurrence. Actually, I worry less now. Now, I take it all in stride. Of course I am still feeling well and not having symptoms! I don't know much about clear cell. I have papillary serous, high grade. stage 4 ovca. I would love to be stage 1 though!!!

    Please try to enjoy your time being cancer free!!! I think other women who have had longer remissions say as the time passes you will worry less!

    Good luck to you!!!

    XOXOXOX
  • Lisa 00
    Lisa 00 Member Posts: 134 Member
    #7
    nancy591 said:

    I agree with Linda
    I know it is easier said then done. I worry all the time. I worried before I had a recurrence. Actually, I worry less now. Now, I take it all in stride. Of course I am still feeling well and not having symptoms! I don't know much about clear cell. I have papillary serous, high grade. stage 4 ovca. I would love to be stage 1 though!!!

    Please try to enjoy your time being cancer free!!! I think other women who have had longer remissions say as the time passes you will worry less!

    Good luck to you!!!

    XOXOXOX

    I too
    had ovarian clear cell, diagnosed Jan. of 2009. I think it was stage 1C because the pathology report said that it had invaded nearby tissue. Also the wash was positive. The pathologist said it was "highly malignant" so probably grade 3. I have to guess myself because no doctor ever told me about the clear cell. Only told me about the endometrioid adeno part of the tumors. But I had radiation as well as the taxo/carbo so I suppose that will only help me with the ovarian cancer problem. Radiation was due to my uterine cancer which they like to radiate.

    Anyway, I too am scared. I figure that in the next 10 years I have a 30 to 40 percent chance that it will come back. Again, no doc had told me anything about my clear cell so my ballpark has been determined by myself from the internet.

    I very much appreciate Linda's words to live by.

    I think about the only thing I can do is try to eat well, exercise and focus on taking things in stride like Nancy mentioned.
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #8
    Lisa 00 said:

    I too
    had ovarian clear cell, diagnosed Jan. of 2009. I think it was stage 1C because the pathology report said that it had invaded nearby tissue. Also the wash was positive. The pathologist said it was "highly malignant" so probably grade 3. I have to guess myself because no doctor ever told me about the clear cell. Only told me about the endometrioid adeno part of the tumors. But I had radiation as well as the taxo/carbo so I suppose that will only help me with the ovarian cancer problem. Radiation was due to my uterine cancer which they like to radiate.

    Anyway, I too am scared. I figure that in the next 10 years I have a 30 to 40 percent chance that it will come back. Again, no doc had told me anything about my clear cell so my ballpark has been determined by myself from the internet.

    I very much appreciate Linda's words to live by.

    I think about the only thing I can do is try to eat well, exercise and focus on taking things in stride like Nancy mentioned.

    10 years!
    Ten years to me would be a gift!!!!
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #9
    nancy591 said:

    10 years!
    Ten years to me would be a gift!!!!

    Oh, yeah, 10 years is more than I dare even hope for!
    Yes, 10 years sounds sooooooo good. I could do a lot with 10 more years! Couldn't we all??

    MAKE IT HAPPEN, LADIES, IF YOU CAN! (((((hugs)))))
  • jadk
    jadk Member Posts: 1
    #10
    lindaprocopio said:

    Ahh, sweetie, you don't wanna be torturing yourself with this!
    It breaks my heart to see anyone who is in remission wasting this precious time worrying about recurrence. ((((Hugs)))). Lucky lucky (SO lucky!!) that you caught your cancer so incredibly early! Unfortunate that the cell type is aggressive, but it is what it is.

    But, I think any of the wonderful ladies here will back me up on this, there is nothing for you in trying to guess what might happen down the road. When I got my grade diagnosis (papillary serous cell type, a Grade 3 aggressive monster), I put my affairs in order and worked with a tax advisor and estate planner to secure my business for my family after my death; and I had the stones in my good jewelry checked and cleaned and packed it all away with little cards for those I wanted to get each piece. I upped the grandkid's college accounts; and wrote notes and put money in birthday cards for them for each year until they turn 18. I sorted out the family heirloomss and started giving them away to my sons each time I saw them; and filled an under-the-bed storage chest with things I want my grandchildren to have.

    And when everything was tidied up, I put death and recurrence out of my mind. My cancer HAS come back, TWICE, after my 2 remissions. But DURING those 2 remissions I NEVER tortured myself with worry about when the cancer will return again. Remission IS life, as good as it gets! Sure, you can look up the statistics. But, why? You aren't a statistic! Who falls on which side of the percentages is a crap shoot, an 'un-knowable'. I lived in my remissions as if my cancer would NEVER return and allowed myself that joy and relief and REST from the worry of cancer. I'm telling you from my experience that it is better to believe you are cured and have your heart broken again if you recur, than it is to waste the joy of remission worrying. Turn your face to the sun and laugh and be happy! Don't do this to yourself. (((Hugs))))

    Comforting

    Hi Linda,

    I am so comforted by your words .  I have just been going nuts this weekend since I found out  I have recurrent ovarian cancer I was stage lc but now am facing more chemo and most likely surgery again.  I really see things in a little different light now with what you said.  I am hoping I can get through this next treatment and just see it has anothr bump in the road and not a death sentence down the road.  I am a very nervous person and this has really almost driven me out of my mind.  Sometimes I think I will lose my mind before the cancer will kill me!!  I am new to writing on this forum but will keep in contact with you all and try to keep my sanity in place.  Am taking Ativan to try to help with the anxiety.  Will have some more drs appt. to see what they will do next for me.  So hope that it will give me more time--I have an 18 mon. old grand baby!!

     

    Hugs to you all!!

  • ptharp
    ptharp Member Posts: 190
    #11
    lindaprocopio said:

    Ahh, sweetie, you don't wanna be torturing yourself with this!
    It breaks my heart to see anyone who is in remission wasting this precious time worrying about recurrence. ((((Hugs)))). Lucky lucky (SO lucky!!) that you caught your cancer so incredibly early! Unfortunate that the cell type is aggressive, but it is what it is.

    But, I think any of the wonderful ladies here will back me up on this, there is nothing for you in trying to guess what might happen down the road. When I got my grade diagnosis (papillary serous cell type, a Grade 3 aggressive monster), I put my affairs in order and worked with a tax advisor and estate planner to secure my business for my family after my death; and I had the stones in my good jewelry checked and cleaned and packed it all away with little cards for those I wanted to get each piece. I upped the grandkid's college accounts; and wrote notes and put money in birthday cards for them for each year until they turn 18. I sorted out the family heirloomss and started giving them away to my sons each time I saw them; and filled an under-the-bed storage chest with things I want my grandchildren to have.

    And when everything was tidied up, I put death and recurrence out of my mind. My cancer HAS come back, TWICE, after my 2 remissions. But DURING those 2 remissions I NEVER tortured myself with worry about when the cancer will return again. Remission IS life, as good as it gets! Sure, you can look up the statistics. But, why? You aren't a statistic! Who falls on which side of the percentages is a crap shoot, an 'un-knowable'. I lived in my remissions as if my cancer would NEVER return and allowed myself that joy and relief and REST from the worry of cancer. I'm telling you from my experience that it is better to believe you are cured and have your heart broken again if you recur, than it is to waste the joy of remission worrying. Turn your face to the sun and laugh and be happy! Don't do this to yourself. (((Hugs))))

    I have a question. I have

    I have a question. I have Serous Grade 3C, Grade 3. What does papillary mean? Becasue I have Serous does that mean I have papillary?

     

  • ptharp
    ptharp Member Posts: 190
    #12
    lindaprocopio said:

    Ahh, sweetie, you don't wanna be torturing yourself with this!
    It breaks my heart to see anyone who is in remission wasting this precious time worrying about recurrence. ((((Hugs)))). Lucky lucky (SO lucky!!) that you caught your cancer so incredibly early! Unfortunate that the cell type is aggressive, but it is what it is.

    But, I think any of the wonderful ladies here will back me up on this, there is nothing for you in trying to guess what might happen down the road. When I got my grade diagnosis (papillary serous cell type, a Grade 3 aggressive monster), I put my affairs in order and worked with a tax advisor and estate planner to secure my business for my family after my death; and I had the stones in my good jewelry checked and cleaned and packed it all away with little cards for those I wanted to get each piece. I upped the grandkid's college accounts; and wrote notes and put money in birthday cards for them for each year until they turn 18. I sorted out the family heirloomss and started giving them away to my sons each time I saw them; and filled an under-the-bed storage chest with things I want my grandchildren to have.

    And when everything was tidied up, I put death and recurrence out of my mind. My cancer HAS come back, TWICE, after my 2 remissions. But DURING those 2 remissions I NEVER tortured myself with worry about when the cancer will return again. Remission IS life, as good as it gets! Sure, you can look up the statistics. But, why? You aren't a statistic! Who falls on which side of the percentages is a crap shoot, an 'un-knowable'. I lived in my remissions as if my cancer would NEVER return and allowed myself that joy and relief and REST from the worry of cancer. I'm telling you from my experience that it is better to believe you are cured and have your heart broken again if you recur, than it is to waste the joy of remission worrying. Turn your face to the sun and laugh and be happy! Don't do this to yourself. (((Hugs))))

    I have a question. I have

    I have a question. I have Serous Grade 3C, Grade 3. What does papillary mean? Becasue I have Serous does that mean I have papillary?

     

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