Papillary serous sarcoma patients

PHK1952
PHK1952 Member Posts: 10
in Uterine/Endometrial Cancer #1

I am newly diagnosed with papillary serous carcinoma and needing some help preparing for the surgery and treatment to follow. Does anyone have some good articles or practical advice? My husband has multiple myeloma and there is a lot of useful info through MMRF and IMF. 

Is there anything for my type of cancer? Thank you!

phkodal@gmail.com

«134

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,488 Member
    #2
    Hey  PHK, at four years out,

    Hey  PHK, at four years out, and lots of searches, this is the only place with information.  There is a TON of information on this site and you might want to read some of the older posts for information and advice.  Seriously, you could go back 3 years and learn a lot.  When I first found this site I read a lot of the posts and there was great information.  

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
    #3
    Treatment for UPSC depends on

    Treatment for UPSC depends on the Stage and your doctor.  I was Stage II, Grade 3 and after my total hysterectomy, my doctor recommended chemo but no radiation.  I only made it through three chemos because I got so sick (liver failure).  I'm hoping the three chemos did the trick but if not and the cancer comes back, I'll deal with it then.

    There is so much good information on this site and everybody is so encouraging.

    Love,

    Eldri

  • PHK1952
    PHK1952 Member Posts: 10
    #4
    NoTimeForCancer said:

    Hey  PHK, at four years out,

    Hey  PHK, at four years out, and lots of searches, this is the only place with information.  There is a TON of information on this site and you might want to read some of the older posts for information and advice.  Seriously, you could go back 3 years and learn a lot.  When I first found this site I read a lot of the posts and there was great information.  

    Thank you❤️

    Thank you!❤️

  • cheerful
    cheerful Member Posts: 261 Member
    #5

     Hi:

      I am responding to your post.  I was diagnosed in February of 2011 (I just reached my 5 year anniversary).  I have Had No reoccurrences thankfully and I was diagnosed with Stage 1.  I go back and see my oncologist for my 6 month checkup (I assume I will only go now once a year starting next year) providing all goes well with my visit in April.  My oncologist wants me to go for a cat scan which I get done now on a once a year basis. In the beginning for the cat scans, the first year I had 3 cat scans alone to make sure my cancer did not come back.  In April of 2011, I started undergoing chemotherapy and had 6 rounds ending in August.  I then had 3 brachytherapy treatments (radiation) in September and October of 2011 every couple of weeks. 

     I have watched my diet and lost 20 lbs going throughchemo treatments. The chemo was doable although after the chemo (2 days later) I only could have 2 meals a day day since the chemo does make you sick and you do not feel like eating.   I took carboplatin and taxol and you do lose all your hair after your first treatment about 2 weeks later. This is the common chemo treatments being diagnosed with UPSC.  I wore my wig which I bought right before my chemo treatments started and wore my wig up until August of 2012 so I wore it for a long time until all my hair grew back.

    I am very blessed and fortunate and very grateful that my UPSC cancer has not returned on me. I have carefully watched I have been eating and try and have very healthy foods.  I am so glad I have finally reached my 5 year mark and it is a huge and big milestone for me.

      I hope I am of some help to you with your starting your cancer journey and I wish you all the best and good luck.

    Cheerful

    a/k/a Jane

     

     

     

  • cheerful
    cheerful Member Posts: 261 Member
    #6

    Hi:

      I forgot to mention in my post I just e-mailed to you that I was 59 1/2 when I was diagnosed 5 years ago. I am now 64 years old.  From your information, it looks like you might be 63 years old. In what area in the US are you from? I live in Penna. (outside of Philadelphia) in the suburbs.

     My oncologist is very well known and people from the Caribbean even come to see my oncologist. My oncologist just recently retired and now works out of the office 1 day a week. He is now in his mid 60s just about a year or two years older than myself.  He is an excellent oncologist and knows so much about my cancer. He has been in practice for a very long time many, many years.

      Since you asked about practical advice, I want to mention about watching your diet and what you eat.  I ate a lot of bologna, hamburgers, fast foods, steaks through the years and now only have lunch meat once in a very great while.  I do not eat at McDonald's or Burger King anymore and now have turkey burgers or a burger that is 92% lean and broil hamburgers for my family in my oven.  I do not have fried foods anymore since I also have cardiovascular disease and watch my cholesterol as I am on medication for high cholesterol although my numbers are now better from blood work.

     Cheerful

    a/k/a Jane

      

      Anyway, if I can be of any more help, you have my e-mail and you can send me an e-mail if you have any questions.

     

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    #7
    cheerful said:

     Hi:

      I am responding to your post.  I was diagnosed in February of 2011 (I just reached my 5 year anniversary).  I have Had No reoccurrences thankfully and I was diagnosed with Stage 1.  I go back and see my oncologist for my 6 month checkup (I assume I will only go now once a year starting next year) providing all goes well with my visit in April.  My oncologist wants me to go for a cat scan which I get done now on a once a year basis. In the beginning for the cat scans, the first year I had 3 cat scans alone to make sure my cancer did not come back.  In April of 2011, I started undergoing chemotherapy and had 6 rounds ending in August.  I then had 3 brachytherapy treatments (radiation) in September and October of 2011 every couple of weeks. 

     I have watched my diet and lost 20 lbs going throughchemo treatments. The chemo was doable although after the chemo (2 days later) I only could have 2 meals a day day since the chemo does make you sick and you do not feel like eating.   I took carboplatin and taxol and you do lose all your hair after your first treatment about 2 weeks later. This is the common chemo treatments being diagnosed with UPSC.  I wore my wig which I bought right before my chemo treatments started and wore my wig up until August of 2012 so I wore it for a long time until all my hair grew back.

    I am very blessed and fortunate and very grateful that my UPSC cancer has not returned on me. I have carefully watched I have been eating and try and have very healthy foods.  I am so glad I have finally reached my 5 year mark and it is a huge and big milestone for me.

      I hope I am of some help to you with your starting your cancer journey and I wish you all the best and good luck.

    Cheerful

    a/k/a Jane

     

     

     

    Thank you

    what an inspiration to all of us, Jane, no matter our diagnosis. Continued good health to you and God bless. 

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    #8
    cheerful said:

    Hi:

      I forgot to mention in my post I just e-mailed to you that I was 59 1/2 when I was diagnosed 5 years ago. I am now 64 years old.  From your information, it looks like you might be 63 years old. In what area in the US are you from? I live in Penna. (outside of Philadelphia) in the suburbs.

     My oncologist is very well known and people from the Caribbean even come to see my oncologist. My oncologist just recently retired and now works out of the office 1 day a week. He is now in his mid 60s just about a year or two years older than myself.  He is an excellent oncologist and knows so much about my cancer. He has been in practice for a very long time many, many years.

      Since you asked about practical advice, I want to mention about watching your diet and what you eat.  I ate a lot of bologna, hamburgers, fast foods, steaks through the years and now only have lunch meat once in a very great while.  I do not eat at McDonald's or Burger King anymore and now have turkey burgers or a burger that is 92% lean and broil hamburgers for my family in my oven.  I do not have fried foods anymore since I also have cardiovascular disease and watch my cholesterol as I am on medication for high cholesterol although my numbers are now better from blood work.

     Cheerful

    a/k/a Jane

      

      Anyway, if I can be of any more help, you have my e-mail and you can send me an e-mail if you have any questions.

     

    Jane

    Congratulations on hitting your 5 year milestone! So happy for you.

    Love and Hugs,

    Cindi

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
    #9
    cheerful said:

     Hi:

      I am responding to your post.  I was diagnosed in February of 2011 (I just reached my 5 year anniversary).  I have Had No reoccurrences thankfully and I was diagnosed with Stage 1.  I go back and see my oncologist for my 6 month checkup (I assume I will only go now once a year starting next year) providing all goes well with my visit in April.  My oncologist wants me to go for a cat scan which I get done now on a once a year basis. In the beginning for the cat scans, the first year I had 3 cat scans alone to make sure my cancer did not come back.  In April of 2011, I started undergoing chemotherapy and had 6 rounds ending in August.  I then had 3 brachytherapy treatments (radiation) in September and October of 2011 every couple of weeks. 

     I have watched my diet and lost 20 lbs going throughchemo treatments. The chemo was doable although after the chemo (2 days later) I only could have 2 meals a day day since the chemo does make you sick and you do not feel like eating.   I took carboplatin and taxol and you do lose all your hair after your first treatment about 2 weeks later. This is the common chemo treatments being diagnosed with UPSC.  I wore my wig which I bought right before my chemo treatments started and wore my wig up until August of 2012 so I wore it for a long time until all my hair grew back.

    I am very blessed and fortunate and very grateful that my UPSC cancer has not returned on me. I have carefully watched I have been eating and try and have very healthy foods.  I am so glad I have finally reached my 5 year mark and it is a huge and big milestone for me.

      I hope I am of some help to you with your starting your cancer journey and I wish you all the best and good luck.

    Cheerful

    a/k/a Jane

     

     

     

    Thank you for posting, Jane!!

    Thank you for posting, Jane!!  It gives us diagnosed with UPSC hope that it can be controlled.

    Love,

    Eldri

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    #10
    cheerful said:

    Hi:

      I forgot to mention in my post I just e-mailed to you that I was 59 1/2 when I was diagnosed 5 years ago. I am now 64 years old.  From your information, it looks like you might be 63 years old. In what area in the US are you from? I live in Penna. (outside of Philadelphia) in the suburbs.

     My oncologist is very well known and people from the Caribbean even come to see my oncologist. My oncologist just recently retired and now works out of the office 1 day a week. He is now in his mid 60s just about a year or two years older than myself.  He is an excellent oncologist and knows so much about my cancer. He has been in practice for a very long time many, many years.

      Since you asked about practical advice, I want to mention about watching your diet and what you eat.  I ate a lot of bologna, hamburgers, fast foods, steaks through the years and now only have lunch meat once in a very great while.  I do not eat at McDonald's or Burger King anymore and now have turkey burgers or a burger that is 92% lean and broil hamburgers for my family in my oven.  I do not have fried foods anymore since I also have cardiovascular disease and watch my cholesterol as I am on medication for high cholesterol although my numbers are now better from blood work.

     Cheerful

    a/k/a Jane

      

      Anyway, if I can be of any more help, you have my e-mail and you can send me an e-mail if you have any questions.

     

    Oncologist

    Hi Jane,

    i attempted to send you an email but perhaps I don't know what I'm doing. I'm also in the Philly area. Would you mind sharing the name of your oncologist?

  • PHK1952
    PHK1952 Member Posts: 10
    #11
    NoTimeForCancer said:

    Hey  PHK, at four years out,

    Hey  PHK, at four years out, and lots of searches, this is the only place with information.  There is a TON of information on this site and you might want to read some of the older posts for information and advice.  Seriously, you could go back 3 years and learn a lot.  When I first found this site I read a lot of the posts and there was great information.  

    Thank you!

    This is a wonderful source of information. I will try and go back and read the older posts. I am new to this format.

  • PHK1952
    PHK1952 Member Posts: 10
    #12
    EZLiving66 said:

    Treatment for UPSC depends on

    Treatment for UPSC depends on the Stage and your doctor.  I was Stage II, Grade 3 and after my total hysterectomy, my doctor recommended chemo but no radiation.  I only made it through three chemos because I got so sick (liver failure).  I'm hoping the three chemos did the trick but if not and the cancer comes back, I'll deal with it then.

    There is so much good information on this site and everybody is so encouraging.

    Love,

    Eldri

    Thank you!

    Eldri,

    I hope you are "all clear". Thanks for your insight and hlep.

  • PHK1952
    PHK1952 Member Posts: 10
    #13
    cheerful said:

     Hi:

      I am responding to your post.  I was diagnosed in February of 2011 (I just reached my 5 year anniversary).  I have Had No reoccurrences thankfully and I was diagnosed with Stage 1.  I go back and see my oncologist for my 6 month checkup (I assume I will only go now once a year starting next year) providing all goes well with my visit in April.  My oncologist wants me to go for a cat scan which I get done now on a once a year basis. In the beginning for the cat scans, the first year I had 3 cat scans alone to make sure my cancer did not come back.  In April of 2011, I started undergoing chemotherapy and had 6 rounds ending in August.  I then had 3 brachytherapy treatments (radiation) in September and October of 2011 every couple of weeks. 

     I have watched my diet and lost 20 lbs going throughchemo treatments. The chemo was doable although after the chemo (2 days later) I only could have 2 meals a day day since the chemo does make you sick and you do not feel like eating.   I took carboplatin and taxol and you do lose all your hair after your first treatment about 2 weeks later. This is the common chemo treatments being diagnosed with UPSC.  I wore my wig which I bought right before my chemo treatments started and wore my wig up until August of 2012 so I wore it for a long time until all my hair grew back.

    I am very blessed and fortunate and very grateful that my UPSC cancer has not returned on me. I have carefully watched I have been eating and try and have very healthy foods.  I am so glad I have finally reached my 5 year mark and it is a huge and big milestone for me.

      I hope I am of some help to you with your starting your cancer journey and I wish you all the best and good luck.

    Cheerful

    a/k/a Jane

     

     

     

    What good news!

    Thank you, Jane,

    Your story is really great to hear right now. I hope you continue to be cancer free.

    Thank you for writing to me. I get my surgery date today.

    In Health,

    Pamela

  • PHK1952
    PHK1952 Member Posts: 10
    #14
    cheerful said:

    Hi:

      I forgot to mention in my post I just e-mailed to you that I was 59 1/2 when I was diagnosed 5 years ago. I am now 64 years old.  From your information, it looks like you might be 63 years old. In what area in the US are you from? I live in Penna. (outside of Philadelphia) in the suburbs.

     My oncologist is very well known and people from the Caribbean even come to see my oncologist. My oncologist just recently retired and now works out of the office 1 day a week. He is now in his mid 60s just about a year or two years older than myself.  He is an excellent oncologist and knows so much about my cancer. He has been in practice for a very long time many, many years.

      Since you asked about practical advice, I want to mention about watching your diet and what you eat.  I ate a lot of bologna, hamburgers, fast foods, steaks through the years and now only have lunch meat once in a very great while.  I do not eat at McDonald's or Burger King anymore and now have turkey burgers or a burger that is 92% lean and broil hamburgers for my family in my oven.  I do not have fried foods anymore since I also have cardiovascular disease and watch my cholesterol as I am on medication for high cholesterol although my numbers are now better from blood work.

     Cheerful

    a/k/a Jane

      

      Anyway, if I can be of any more help, you have my e-mail and you can send me an e-mail if you have any questions.

     

    5 Year mark...WOW!

    HI Jane,

    Thanks for the practical advice. At this point, I am in a new country. 

    I am 64 years old. My husband just reached his 5-year mark with multiple myeloma. The time goes so fast and we are so lucky he is doing as well as he is.

    I live in New Hampshire and am very close to Boston. My onco is from MGH and highly respected. after surgery ,I will get a second opinion about treatment. My husband goes to Dana-Farber, and we have the name of a good gyn-onco there.

    Did you get a cat scan prior to your surgery? Or Pet scan?

    Were you able to work after surgery? or radiation?  

    My e-mail is phkodal@gmail.com. No need to write, or at least no pressure.

    I am so full of questions at this point!

    In Health, and with gratitude,

    Pamela

  • cheerful
    cheerful Member Posts: 261 Member
    #15
    EZLiving66 said:

    Thank you for posting, Jane!!

    Thank you for posting, Jane!!  It gives us diagnosed with UPSC hope that it can be controlled.

    Love,

    Eldri

    Hi Eldri:

      Thanks for responding.  I hope I am inspring woman on the uterine board from my being 5 years out from having been diagnosed with UPSC in 2011.

      I am just very grateful and thankful that I have remained cancer free with No reoccurrences and hope that it will continue to stay that way. I am very grateful I was diagnosed with Stage 1 and that my cancer was caught early.

      I do plan to remain on the uterine board site and will respond to e-mails.  

      Good luck with your UPSC diagnosis and I hope that everything continues to go well for you.

    Cheerful

    a/k/a Jane

     

  • cheerful
    cheerful Member Posts: 261 Member
    #16
    TeddyandBears_Mom said:

    Jane

    Congratulations on hitting your 5 year milestone! So happy for you.

    Love and Hugs,

    Cindi

    Hi Cindi:

      Thanks for responding and your good wishes for hitting my 5 year mark. Yes, it is a huge and big milestone for me. I will feel much better once I see my oncologist in 2 more weeks for my 5 year checkup just to be sure that everything still looks good for me. He does want me to go for a cat scan which I will have done in the near future.

    Love,

    Jane

     

  • ncg007
    ncg007 Member Posts: 138 Member
    #17
    cheerful said:

    Hi Cindi:

      Thanks for responding and your good wishes for hitting my 5 year mark. Yes, it is a huge and big milestone for me. I will feel much better once I see my oncologist in 2 more weeks for my 5 year checkup just to be sure that everything still looks good for me. He does want me to go for a cat scan which I will have done in the near future.

    Love,

    Jane

     

    Congratulations Jane

    Congratulations Jane on achieving 5 years! 

  • ncg007
    ncg007 Member Posts: 138 Member
    #18
    PHK1952 said:

    5 Year mark...WOW!

    HI Jane,

    Thanks for the practical advice. At this point, I am in a new country. 

    I am 64 years old. My husband just reached his 5-year mark with multiple myeloma. The time goes so fast and we are so lucky he is doing as well as he is.

    I live in New Hampshire and am very close to Boston. My onco is from MGH and highly respected. after surgery ,I will get a second opinion about treatment. My husband goes to Dana-Farber, and we have the name of a good gyn-onco there.

    Did you get a cat scan prior to your surgery? Or Pet scan?

    Were you able to work after surgery? or radiation?  

    My e-mail is phkodal@gmail.com. No need to write, or at least no pressure.

    I am so full of questions at this point!

    In Health, and with gratitude,

    Pamela

    Pamela

    Pamela...Sorry you've had to join us here.  I'll be 55 next month and was diagnosed with a 50/50 mix of endometriod and papillary serous carcinoma, stage IIIC1, grade 3.  I had surgery Aug 21st and just completed treatment Feb 22nd and after 8 long months I will return to work on April 18th.  I had a scan prior to and after surgery and dr will not do another unless there is reason to.  After surgery dr put me on 8 week leave, I would have been ready to return after 4 weeks but unfortunately I started chemoradiation 5 weeks after surgery and remained off work for the duration.  If I did not have chemo in conjunction with radiation, I probably would have worked during as the radiation itself was not bad at all for me.  However everyones experience is different, there are many woman on this board that continued to work.  My full treatment consisted of 2 rounds of chemo(Cisplatin) along with 28 external radiation treatments followed by 4 more rounds of chemo(carboplatin/Paclitaxel).  Get through your surgery and hopefully you will find no further treatment needed and if you do, you've made the right decision to get a second opinion, I got three.  Keep asking questions, we are all here to help.  Wishing you the best.

    Nancy

    Edit note:  i just noticed your subject vs post conflict, do you have sarcoma or carcinoma?

  • Unknown
    Unknown
    #19
    ncg007 said:

    Pamela

    Pamela...Sorry you've had to join us here.  I'll be 55 next month and was diagnosed with a 50/50 mix of endometriod and papillary serous carcinoma, stage IIIC1, grade 3.  I had surgery Aug 21st and just completed treatment Feb 22nd and after 8 long months I will return to work on April 18th.  I had a scan prior to and after surgery and dr will not do another unless there is reason to.  After surgery dr put me on 8 week leave, I would have been ready to return after 4 weeks but unfortunately I started chemoradiation 5 weeks after surgery and remained off work for the duration.  If I did not have chemo in conjunction with radiation, I probably would have worked during as the radiation itself was not bad at all for me.  However everyones experience is different, there are many woman on this board that continued to work.  My full treatment consisted of 2 rounds of chemo(Cisplatin) along with 28 external radiation treatments followed by 4 more rounds of chemo(carboplatin/Paclitaxel).  Get through your surgery and hopefully you will find no further treatment needed and if you do, you've made the right decision to get a second opinion, I got three.  Keep asking questions, we are all here to help.  Wishing you the best.

    Nancy

    Edit note:  i just noticed your subject vs post conflict, do you have sarcoma or carcinoma?

    ncg007

    You are the first lady I've meet that has mixed.  My path report said 75% endometriod and 25% serous, stage 111C1, grade 3.  I've read if it's over 10% serous. doctors treat us as having serous.  But I also read that mixed has a slightly better prognosis than pure serous.  Did your doctor comment on that?  I didn't ask my doctor much about prognosis, he just indicated that serous had to be treated with chemo because it's highly recurrant and aggressive.  Hugs Nancy

  • ncg007
    ncg007 Member Posts: 138 Member
    #20
    unknown said:

    ncg007

    You are the first lady I've meet that has mixed.  My path report said 75% endometriod and 25% serous, stage 111C1, grade 3.  I've read if it's over 10% serous. doctors treat us as having serous.  But I also read that mixed has a slightly better prognosis than pure serous.  Did your doctor comment on that?  I didn't ask my doctor much about prognosis, he just indicated that serous had to be treated with chemo because it's highly recurrant and aggressive.  Hugs Nancy

    Mixed cells

    Nancy...Yes I've also read that serous trumps the other when mixed cells.  Dr did not note whther or not better prognosis than pure, just that 50% wasn't good.  Unfortunately it is high grade and aggressive which is why we took the aggressive treatment route of chemoradiation instead of the sandwich method.  Recurrence rate is high, goal is to get past two years to where that percentage will significantly drop, then hit 5 year mark!  Ive lost track, have you finished treatment?

    Nancy

  • Gardena
    Gardena Member Posts: 102
    #21
    ncg007 said:

    Mixed cells

    Nancy...Yes I've also read that serous trumps the other when mixed cells.  Dr did not note whther or not better prognosis than pure, just that 50% wasn't good.  Unfortunately it is high grade and aggressive which is why we took the aggressive treatment route of chemoradiation instead of the sandwich method.  Recurrence rate is high, goal is to get past two years to where that percentage will significantly drop, then hit 5 year mark!  Ive lost track, have you finished treatment?

    Nancy

    Keeping Port after treatment?

    Nancy, I just read your post - your doctor's comment about getting to two years clear reminded me of something my radiologist oncologist said to me, which was, "you dont need to worry about this cancer raging back. (I was questioning whether the time to do radiation was worth it, or was it just going to come raging back in a month). He went on to say that in my case, reoccurance would most likely happen after one year, if it was going to happen sooner rather than later. I guess the idea being that if anything is left (after the aggressive treatments and the positive response of my body), its microscopic and it would take that long to become apparent.

    I'm in week 2 of doing 25 external radiation/6 low dose cisplatin treatments. Finished carbo/taxol 5 weeks ago - I am wondering if I shld keep my port in for a year from this May 1st when I'm done w treatment. I have no problem w it, and I dont like the idea of taking it out only to have to put it back in one years time, if in fact, I need chemo again.

    May I ask, do you still have your port? Ladies who have just finished treatment, do you still have your port? How long are you keeping it? Eldri's port horror story is the reason I think I shld keep mine for awhile. I dont want to mess w a good (ie; working) thing.

    Thanks all, I love this group

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