UPSC - Any survivors greater than 5years?

Hello Fellow UPSC sisters.. I would like to start a discussion on looking at recurrance rates and survival from the USPC group. This may sound depressing, but I think it would be positive to put light on this "Rare Agressive Cancer".

I had surgery (TAH + BSO and pelvic node clearance Aug 2010). Surgical staging IIIC. (Node involvement). Followed by 8 cycles of Taxol/Carbo and 4 Treaments of Vag Brachytherapy.

Now 2+years later and many scans (PET + CT scans).. No recurrance...Thank God.

I feel from reading some of the stories on this site that it is a given that one will have recurrance ??? Or are women who are now USPC cancer free, not on this site?? Anyone out there 5 years on who has had an all clear? Also would like to here if there is anyone with successful clear scans post treatment for recurrance. Cat
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Comments

  • willbesurvivor
    willbesurvivor Member Posts: 48
    My mother was diagnosed UPSC
    My mother was diagnosed UPSC IIIC, recurrance within 5 months following NED and then passed away within 2 years of diagnosis. Refused further chemo following recurrance.
  • ConnieSW
    ConnieSW Member Posts: 1,604 Member
    or lack of, to this post is unsettling, to say the least.
  • daisy366
    daisy366 Member Posts: 1,458
    ConnieSW said:

    or lack of, to this post is unsettling, to say the least.

    4 years and counting
    I'm still here - dealing with second recurrence but do worry about some that have not posted in awhile - like snowbird. And mourn those we know have passed on way to soon - Linda, Diane, and Maggie.

    Mary Ann
  • TAyers
    TAyers Member Posts: 86
    Cat, I too have UPSC and was
    Cat, I too have UPSC and was diagnosed Grade 3 Stage 3,on June4 2012, just finished only 6 rounds of chemo and I have my radiation consult on Monday. I am only 45 years old. Would love to see long term survivors.
  • artist49
    artist49 Member Posts: 87
    any survivors?
    I've posted my story before but I feel that the dismal response to your question leaves everyone needing a little ray of hope , so here I go again. I had surgery in September, 2010 and was diagnosed with UPSC stage 4 grade 3 with cancer found in 39 lymph nodes. A patient at Sloan, I was put on a clinical trial - avastin, carboplatin and Ixabepilone
    for 6 treatments and then avastin every 3 weeks for maintenance. It is now Nov. 2012 of course and I remain NED and feeling great. Given the poor prognosis of this disease and my advanced stage, I despaired of ever attending my grandson's Bar Mitzvah or ever seeing any of my grandchildren get married. Two weeks ago I attended the Bar Mitzvah and it was beautiful. In two weeks from now my oldest granddaughter is getting married! There is hope
    for everyone. We must keep looking forward because the statistics belong to the past and the future belongs to us. We must learn from each other and explore every avenue available to us. Conventional treatment, diet, exercise - leave no stone unturned.
  • beila
    beila Member Posts: 97 Member
    artist49 said:

    any survivors?
    I've posted my story before but I feel that the dismal response to your question leaves everyone needing a little ray of hope , so here I go again. I had surgery in September, 2010 and was diagnosed with UPSC stage 4 grade 3 with cancer found in 39 lymph nodes. A patient at Sloan, I was put on a clinical trial - avastin, carboplatin and Ixabepilone
    for 6 treatments and then avastin every 3 weeks for maintenance. It is now Nov. 2012 of course and I remain NED and feeling great. Given the poor prognosis of this disease and my advanced stage, I despaired of ever attending my grandson's Bar Mitzvah or ever seeing any of my grandchildren get married. Two weeks ago I attended the Bar Mitzvah and it was beautiful. In two weeks from now my oldest granddaughter is getting married! There is hope
    for everyone. We must keep looking forward because the statistics belong to the past and the future belongs to us. We must learn from each other and explore every avenue available to us. Conventional treatment, diet, exercise - leave no stone unturned.

    Mazel Tov
    Artist 49.....thank you so much for posting a POSITIVE story, which is what we need.
    So glad you are feeling well and enjoying family mitzvas

    I collect role models, and you are one of them!!
    I just started a week ago on Doxil, and am planning to get on Avastin starting on my next chemo
    It's not covered, and will cost me $4000/dose
    May I ask you how you cover maintennance?.....or is it still part of your clinical trial

    Looking forward....yes
    there are always advances
    I look to the AIDS history, where the mantra was "stay alive for the cure", which against all odds, came to pass, so that now HIV is a manageable chronic disease

    all the best ,
    Beila
  • Ro10
    Ro10 Member Posts: 1,561
    beila said:

    Mazel Tov
    Artist 49.....thank you so much for posting a POSITIVE story, which is what we need.
    So glad you are feeling well and enjoying family mitzvas

    I collect role models, and you are one of them!!
    I just started a week ago on Doxil, and am planning to get on Avastin starting on my next chemo
    It's not covered, and will cost me $4000/dose
    May I ask you how you cover maintennance?.....or is it still part of your clinical trial

    Looking forward....yes
    there are always advances
    I look to the AIDS history, where the mantra was "stay alive for the cure", which against all odds, came to pass, so that now HIV is a manageable chronic disease

    all the best ,
    Beila

    I too am a 4 year survivor of UPSC
    I have had two recurrences and am probably working on a third recurrence, but I am a survivor! I knew at diagnosis of Stage 3C that it would be treated as a "chronic" disease. I am happy to still be here 4 years later, and still have treatment options. I have had minimal side effects from all my treatments. When I am not I In treatment I try to travel and enjoy each and every day. I keep contact with positive people and do not spend time with negative people.

    I just bought a plaque that says " Cherish yesterday, Dream tomorrow, and Live today". That's a motto I try to follow.

    There is a lot of negative statistics on the Internet, so I stopped reading them shortly after diagnosis. The information I rely on comes from others
    On This site. It contains the most current information. Along with the current information is the wonderful support I receive on this site.

    Hope this offers some encouragement, even though I am not a 5 year survivor........yet. In peace and caring.
  • Double Whammy
    Double Whammy Member Posts: 2,832
    Ro10 said:

    I too am a 4 year survivor of UPSC
    I have had two recurrences and am probably working on a third recurrence, but I am a survivor! I knew at diagnosis of Stage 3C that it would be treated as a "chronic" disease. I am happy to still be here 4 years later, and still have treatment options. I have had minimal side effects from all my treatments. When I am not I In treatment I try to travel and enjoy each and every day. I keep contact with positive people and do not spend time with negative people.

    I just bought a plaque that says " Cherish yesterday, Dream tomorrow, and Live today". That's a motto I try to follow.

    There is a lot of negative statistics on the Internet, so I stopped reading them shortly after diagnosis. The information I rely on comes from others
    On This site. It contains the most current information. Along with the current information is the wonderful support I receive on this site.

    Hope this offers some encouragement, even though I am not a 5 year survivor........yet. In peace and caring.

    Yes! One of my best friends
    is a 6 year survivor. She was Stage 2, and remains NED. She still has exams and Pap smears every 6 months and a CA-125. All is well with her and I am so happy for her.

    Suzanne
  • ConnieSW
    ConnieSW Member Posts: 1,604 Member

    Yes! One of my best friends
    is a 6 year survivor. She was Stage 2, and remains NED. She still has exams and Pap smears every 6 months and a CA-125. All is well with her and I am so happy for her.

    Suzanne

    I have read your stories
    I have read your stories before but it helps to be reminded. My courage needs a booster every now and again as I adjust to my new normal, post treatment. Thankyou for your generous spirits.
  • artist49
    artist49 Member Posts: 87
    beila said:

    Mazel Tov
    Artist 49.....thank you so much for posting a POSITIVE story, which is what we need.
    So glad you are feeling well and enjoying family mitzvas

    I collect role models, and you are one of them!!
    I just started a week ago on Doxil, and am planning to get on Avastin starting on my next chemo
    It's not covered, and will cost me $4000/dose
    May I ask you how you cover maintennance?.....or is it still part of your clinical trial

    Looking forward....yes
    there are always advances
    I look to the AIDS history, where the mantra was "stay alive for the cure", which against all odds, came to pass, so that now HIV is a manageable chronic disease

    all the best ,
    Beila

    cost of Avastin
    To answer your question about cost of Avastin - the drug manufacturer pays for the Avastin as part of the clinical trial .
  • lkchapman
    lkchapman Member Posts: 106
    Moved on
    I like to think that those who have made it past the 5 year mark no longer look in on this board and are off living their lives. I myself, am a 3 1/2 year survivor of stage IIIC2 high grade UPSC after completing chemo/xrt in 2009. I come to this board less and less often as time goes by. The CSN website isn't at the top of my url list anymore and that's a really good thing! To me it means that I'm getting my life back.

    Laura
  • beila
    beila Member Posts: 97 Member
    lkchapman said:

    Moved on
    I like to think that those who have made it past the 5 year mark no longer look in on this board and are off living their lives. I myself, am a 3 1/2 year survivor of stage IIIC2 high grade UPSC after completing chemo/xrt in 2009. I come to this board less and less often as time goes by. The CSN website isn't at the top of my url list anymore and that's a really good thing! To me it means that I'm getting my life back.

    Laura

    moving on
    that's great
    Wonderful that you are getting your life back
    and I love that photo of your adorable pussycat!!

    Beila
  • ixmii
    ixmii Member Posts: 4
    I will hit 5 years this
    I will hit 5 years this February...
  • Catmalogen
    Catmalogen Member Posts: 19
    ixmii said:

    I will hit 5 years this
    I will hit 5 years this February...

    Hi All
    Thank you all for comments on my discussion topic. I am very sensitive to the topic as well I should be, given that I too am like all on this site.. Surviving and getting on with it one day at a time. It's great to read so many comments from the UPSC group. It all points to the positive strong fighting bunch we are. Delighted to read that those of you with recurrance have been offered treatment and are doing well.

    Even more enlightening to read is yes indeed life goes on and I am sure the ladies who are 5 years on and well, do not visit this site. !!

    All the more reason to keep information and support positive and forwarding thinking on for the rest of us, as mentioned by many of you in discussion.

    While reading discussions, I noted that some women are followed up with scans, CA125 markers and PAP... My medical team Scan (Cat 0r PET)every 6months, Tumour markers CA125 I am told are not true indicators of activity (unless you had bloods done prior to surgery). And PAP is only performed on women whose cervix is still intact. I had a TAH+BSO and vaginal vault brachytherapy, hence PAP contraindicated as vaginal cells (cervix removed) will already be changed by radiation. Has the group any comments?? Cat
  • Catmalogen
    Catmalogen Member Posts: 19

    My mother was diagnosed UPSC
    My mother was diagnosed UPSC IIIC, recurrance within 5 months following NED and then passed away within 2 years of diagnosis. Refused further chemo following recurrance.

    Hi
    Thank you for your reply and may I offer my sympathy on your Mothers passing. I can understand only to well why your mother refused further chemo. It is something I will strongly consider doing if I diagnosed with recurrance in the future.
  • Catmalogen
    Catmalogen Member Posts: 19
    artist49 said:

    any survivors?
    I've posted my story before but I feel that the dismal response to your question leaves everyone needing a little ray of hope , so here I go again. I had surgery in September, 2010 and was diagnosed with UPSC stage 4 grade 3 with cancer found in 39 lymph nodes. A patient at Sloan, I was put on a clinical trial - avastin, carboplatin and Ixabepilone
    for 6 treatments and then avastin every 3 weeks for maintenance. It is now Nov. 2012 of course and I remain NED and feeling great. Given the poor prognosis of this disease and my advanced stage, I despaired of ever attending my grandson's Bar Mitzvah or ever seeing any of my grandchildren get married. Two weeks ago I attended the Bar Mitzvah and it was beautiful. In two weeks from now my oldest granddaughter is getting married! There is hope
    for everyone. We must keep looking forward because the statistics belong to the past and the future belongs to us. We must learn from each other and explore every avenue available to us. Conventional treatment, diet, exercise - leave no stone unturned.

    Hello
    Thank you for your very positive story, You are indeed a survivor. I hope you have a wonderful day at your oldest granddaughters wedding. I have explored options in the event that conventional treatment may not be successful and came across some wonderful truw life stories about Essiac Tea? have you heard of about it's claims ??
  • Catmalogen
    Catmalogen Member Posts: 19
    artist49 said:

    any survivors?
    I've posted my story before but I feel that the dismal response to your question leaves everyone needing a little ray of hope , so here I go again. I had surgery in September, 2010 and was diagnosed with UPSC stage 4 grade 3 with cancer found in 39 lymph nodes. A patient at Sloan, I was put on a clinical trial - avastin, carboplatin and Ixabepilone
    for 6 treatments and then avastin every 3 weeks for maintenance. It is now Nov. 2012 of course and I remain NED and feeling great. Given the poor prognosis of this disease and my advanced stage, I despaired of ever attending my grandson's Bar Mitzvah or ever seeing any of my grandchildren get married. Two weeks ago I attended the Bar Mitzvah and it was beautiful. In two weeks from now my oldest granddaughter is getting married! There is hope
    for everyone. We must keep looking forward because the statistics belong to the past and the future belongs to us. We must learn from each other and explore every avenue available to us. Conventional treatment, diet, exercise - leave no stone unturned.

    Hello
    Thank you for your very positive story, You are indeed a survivor. I hope you have a wonderful day at your oldest granddaughters wedding. I have explored options in the event that conventional treatment may not be successful and came across some wonderful truw life stories about Essiac Tea? have you heard of about it's claims ??
  • daisy366
    daisy366 Member Posts: 1,458

    Hi All
    Thank you all for comments on my discussion topic. I am very sensitive to the topic as well I should be, given that I too am like all on this site.. Surviving and getting on with it one day at a time. It's great to read so many comments from the UPSC group. It all points to the positive strong fighting bunch we are. Delighted to read that those of you with recurrance have been offered treatment and are doing well.

    Even more enlightening to read is yes indeed life goes on and I am sure the ladies who are 5 years on and well, do not visit this site. !!

    All the more reason to keep information and support positive and forwarding thinking on for the rest of us, as mentioned by many of you in discussion.

    While reading discussions, I noted that some women are followed up with scans, CA125 markers and PAP... My medical team Scan (Cat 0r PET)every 6months, Tumour markers CA125 I am told are not true indicators of activity (unless you had bloods done prior to surgery). And PAP is only performed on women whose cervix is still intact. I had a TAH+BSO and vaginal vault brachytherapy, hence PAP contraindicated as vaginal cells (cervix removed) will already be changed by radiation. Has the group any comments?? Cat

    monitoring protocol
    I get CA125 - mine was elevated prior to surgery and seems to be reliable indicator - and PET scans
    no pap - doc tells me there's nothing to check but I will inquire again.
  • lkchapman
    lkchapman Member Posts: 106

    Hi All
    Thank you all for comments on my discussion topic. I am very sensitive to the topic as well I should be, given that I too am like all on this site.. Surviving and getting on with it one day at a time. It's great to read so many comments from the UPSC group. It all points to the positive strong fighting bunch we are. Delighted to read that those of you with recurrance have been offered treatment and are doing well.

    Even more enlightening to read is yes indeed life goes on and I am sure the ladies who are 5 years on and well, do not visit this site. !!

    All the more reason to keep information and support positive and forwarding thinking on for the rest of us, as mentioned by many of you in discussion.

    While reading discussions, I noted that some women are followed up with scans, CA125 markers and PAP... My medical team Scan (Cat 0r PET)every 6months, Tumour markers CA125 I am told are not true indicators of activity (unless you had bloods done prior to surgery). And PAP is only performed on women whose cervix is still intact. I had a TAH+BSO and vaginal vault brachytherapy, hence PAP contraindicated as vaginal cells (cervix removed) will already be changed by radiation. Has the group any comments?? Cat

    vaginal pap and CA125
    My doc at anderson does a vaginal pap and ca125 at every visit. Its just protocol there I suppose.
  • debrajo
    debrajo Member Posts: 1,095
    lkchapman said:

    vaginal pap and CA125
    My doc at anderson does a vaginal pap and ca125 at every visit. Its just protocol there I suppose.

    Me too! CA125 and then Pap
    Me too! CA125 and then Pap every time. Have had only one ct scan since dx. over three years ago. They said no ct's at MDA unless they supect recurrence. Also only one MRI, but do have an x-ray(chest) every six months.