Mom just diagnosed with Uterine Carcinosarcoma

CDS1037
CDS1037 Member Posts: 3
in Uterine/Endometrial Cancer #1
Hello. My Mom, age 72, was just diagnosed yesterday with uterine carcinosarcoma. She is full of life and boundless energy and she is loved by everyone who knows her. I looked up uterine carcinosarcoma and was faced with information I wish I hadnt seen. I am so scared for what lies ahead for her and our family...we're all kind of in shock and feel numb at this point. Her surgery is next Friday, on the 21st, to be followed by 3 rounds of vaginal radiation and 18 weeks of chemo. I am reaching out to all of you because I really need to hear some positive, hopeful and encouraging stories and information from any of you who have had success battling this particular type of tumor. I am praying that it is at an early stage when she has the surgery. I wish all of you health and peace and anxiously await hearing from any of you that can give me some hope for my beautiful mother. Cindi

Comments

  • debrajo
    debrajo Member Posts: 1,095 Member
    #2
    You are getting ahead of
    You are getting ahead of yourself! Slow down and stop reading info from Dr. Google! Stats are outdated and not clear. I have been NED(clear of cancer) for 28 months. Had radical hysterectomy, six rounds of standard taxol/carboplatin, then five rounds of internal radiation. I have UPSC, Uterine Papillary Serus Carsanoma. It's tough but VERY do-able. Take notes of EVERYTHING, write a list of questions.make sure your mother has at least one advocate to go with her. There are a lot of long-timers here and we will be here for all of you. We discuss EVERYTHING,even pets and personal family things. Nothing is out of bounds. Ask anything you want and someone will be around to answer it. Please come back often and let us know what is happening with ALL of ya'll! Best, Debrajo
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #3
    debrajo said:

    You are getting ahead of
    You are getting ahead of yourself! Slow down and stop reading info from Dr. Google! Stats are outdated and not clear. I have been NED(clear of cancer) for 28 months. Had radical hysterectomy, six rounds of standard taxol/carboplatin, then five rounds of internal radiation. I have UPSC, Uterine Papillary Serus Carsanoma. It's tough but VERY do-able. Take notes of EVERYTHING, write a list of questions.make sure your mother has at least one advocate to go with her. There are a lot of long-timers here and we will be here for all of you. We discuss EVERYTHING,even pets and personal family things. Nothing is out of bounds. Ask anything you want and someone will be around to answer it. Please come back often and let us know what is happening with ALL of ya'll! Best, Debrajo

    Cindi,
    So sorry that your mom has joined this "club". Sure is a scary journey. I agree that stats are scary and how could your healthy vibrant mom be so sick?

    Debrajo gave good advice. I would just strongly advocate that you make sure doc orders a tissue assay of the tumor. The info will help them pinpoint best treatment for her post surgery. Not all docs order this routinely.

    Ask lots of questions and get copies of records. Have someone with her to advocate.

    All the best. She will do well since she is in such good health. Cancer is much like a chronic illness nowadays. I also have UPSC, another aggressive bast*&%!!! diagnosed 4 years ago and like your mom, in good health. Go figure.

    Hugs to all, Mary Ann
  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    #4
    Glad you found us.
    I second the opinion to stay off the Internet Searching. It is not up to date and the case studies use old information to form their opinions. Try and get a dr who is a gyn oncologist if you can, they have the knowledge of both areas. The drs will not be able to tell ya'll a lot of information until after the surgery and the pathology report is back. But you can ask for a tissue assay, how many lymph nodes do they plan to take, is the surgery robotic or abdominal, are they taking everything out including the Omentum (the layer of fat in front of the stomach). I was told I had Carcinosarcoma on April 1, 2011, I have had the surgery (total abdominal hysterectomy – TAH) was told by the Dr that did the surgery that it looked like the tumor was contained to just the uterus. Pathology report stated that 2 microscopic cells was in one lymph node so the cancer got upgraded to stage 3C. I started chemo treatment in May 2011 and it went through Aug 2011. I have passed the 1 year mark and I am NED. Always have someone with your Mom when she goes to see the Dr, it helps to have a second set of ears and someone to take notes. I had both my sister and daughter with me at every appointment. My daughter even used her smartphone to record some of the meetings just so we did not miss anything. The ladies on the boards here are great and always have good advice, as been there done that experience. I will add ya’ll to my prayer list. Good Luck and let us know how it goes. trish
  • CDS1037
    CDS1037 Member Posts: 3
    #5
    txtrisha55 said:

    Glad you found us.
    I second the opinion to stay off the Internet Searching. It is not up to date and the case studies use old information to form their opinions. Try and get a dr who is a gyn oncologist if you can, they have the knowledge of both areas. The drs will not be able to tell ya'll a lot of information until after the surgery and the pathology report is back. But you can ask for a tissue assay, how many lymph nodes do they plan to take, is the surgery robotic or abdominal, are they taking everything out including the Omentum (the layer of fat in front of the stomach). I was told I had Carcinosarcoma on April 1, 2011, I have had the surgery (total abdominal hysterectomy – TAH) was told by the Dr that did the surgery that it looked like the tumor was contained to just the uterus. Pathology report stated that 2 microscopic cells was in one lymph node so the cancer got upgraded to stage 3C. I started chemo treatment in May 2011 and it went through Aug 2011. I have passed the 1 year mark and I am NED. Always have someone with your Mom when she goes to see the Dr, it helps to have a second set of ears and someone to take notes. I had both my sister and daughter with me at every appointment. My daughter even used her smartphone to record some of the meetings just so we did not miss anything. The ladies on the boards here are great and always have good advice, as been there done that experience. I will add ya’ll to my prayer list. Good Luck and let us know how it goes. trish

    Thanks so much to all of you
    Dear DebraJo, Mary Ann and Trish,
    Thanks for your replies.....it is very comforting to hear from all of you. I promise, I am done with the internet. My sister,my aunt and me will be with my Mom every step of the way. I did take notes at the visit on Wednesday when we got the diagnosis and will continue to do that all the time moving forward. We are using a gyn oncologist. He is the head of the gyn oncology department...we are at St. Luke's Hospital in Bethlehem, PA. His name is Dr. Nicholas Taylor...does anyone know him?
    I'm not sure what a tissue assay is...can you all tell me a little more about that? Do I ask the Dr. about that before the surgery? He said it will be hopefully laproscopic, robotically assisted surgery, but we signed the consent for him to essentially do whatever he needed to do during the procedure.
    Trish, you had the same type as my Mom and I LOVE hearing how great you are doing! I am so happy for all of you and will also keep all of you in my prayers! My mother is overwhelmed at the love and support and kindness of so many of our friends and family in just the last 2 days since the diagnosis..there are so many strong, good people out there and I appreciate all of you very much!
    I will write again over the weekend after my Mom has the surgery. To all of you reading..please say a little prayer that the news will be good for my Mom and that her surgery will go well( her name is Carol). Thanks again for the support and I wish all of you continued good health and joy each day......Hugs,Cindi
  • cleo
    cleo Member Posts: 144
    #6
    CDS1037 said:

    Thanks so much to all of you
    Dear DebraJo, Mary Ann and Trish,
    Thanks for your replies.....it is very comforting to hear from all of you. I promise, I am done with the internet. My sister,my aunt and me will be with my Mom every step of the way. I did take notes at the visit on Wednesday when we got the diagnosis and will continue to do that all the time moving forward. We are using a gyn oncologist. He is the head of the gyn oncology department...we are at St. Luke's Hospital in Bethlehem, PA. His name is Dr. Nicholas Taylor...does anyone know him?
    I'm not sure what a tissue assay is...can you all tell me a little more about that? Do I ask the Dr. about that before the surgery? He said it will be hopefully laproscopic, robotically assisted surgery, but we signed the consent for him to essentially do whatever he needed to do during the procedure.
    Trish, you had the same type as my Mom and I LOVE hearing how great you are doing! I am so happy for all of you and will also keep all of you in my prayers! My mother is overwhelmed at the love and support and kindness of so many of our friends and family in just the last 2 days since the diagnosis..there are so many strong, good people out there and I appreciate all of you very much!
    I will write again over the weekend after my Mom has the surgery. To all of you reading..please say a little prayer that the news will be good for my Mom and that her surgery will go well( her name is Carol). Thanks again for the support and I wish all of you continued good health and joy each day......Hugs,Cindi

    2007. Carcino sarcoma
    2007. Carcino sarcoma through uterus to bladder and lymph nodes at age 67. 3C/4. No family history etc..out of the blue. Have just had the 5 year CT scan, NED, and I am certainly not the only one out there Read nothing!! Be positive and determined.
  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
    #7
    I am hoping for the best for
    I am hoping for the best for your mom. I am still relatively new to this cancer business and am so grateful to the women on this site for their support and information/education. As you have already seen, they are warm, caring and Johnny on the spot when you need them.

    Connie
  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    #8
    CDS1037 said:

    Thanks so much to all of you
    Dear DebraJo, Mary Ann and Trish,
    Thanks for your replies.....it is very comforting to hear from all of you. I promise, I am done with the internet. My sister,my aunt and me will be with my Mom every step of the way. I did take notes at the visit on Wednesday when we got the diagnosis and will continue to do that all the time moving forward. We are using a gyn oncologist. He is the head of the gyn oncology department...we are at St. Luke's Hospital in Bethlehem, PA. His name is Dr. Nicholas Taylor...does anyone know him?
    I'm not sure what a tissue assay is...can you all tell me a little more about that? Do I ask the Dr. about that before the surgery? He said it will be hopefully laproscopic, robotically assisted surgery, but we signed the consent for him to essentially do whatever he needed to do during the procedure.
    Trish, you had the same type as my Mom and I LOVE hearing how great you are doing! I am so happy for all of you and will also keep all of you in my prayers! My mother is overwhelmed at the love and support and kindness of so many of our friends and family in just the last 2 days since the diagnosis..there are so many strong, good people out there and I appreciate all of you very much!
    I will write again over the weekend after my Mom has the surgery. To all of you reading..please say a little prayer that the news will be good for my Mom and that her surgery will go well( her name is Carol). Thanks again for the support and I wish all of you continued good health and joy each day......Hugs,Cindi

    tissue assay & estrogen receptor assay
    First off I did not even know of these things before my surgery it was after I came to these boards that I heard talk of them. If you go to the main page of Uterine Cancer you can go to the search and type in assay. I do know that they are both test that is done on the tissue removed during surgery. The tissue assay will tell what chemo is best for the type of cancer. The estrogen tells if the responsiveness of the tumor to estrogen hormones it can be positive or negative. If it a ER+ then she will need to stay away from those foods that have estrogen in them such as soy and other foods. Like I said I am not real familiar with all this because I did not have it. There are lots of messages on here discussing it. Will are Carol and family now by name to my prayer list. Good Luck keep us posted. trish
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #9
    ConnieSW said:

    I am hoping for the best for
    I am hoping for the best for your mom. I am still relatively new to this cancer business and am so grateful to the women on this site for their support and information/education. As you have already seen, they are warm, caring and Johnny on the spot when you need them.

    Connie

    Assay
    As Trish mentioned, the will test the tumor with many chemo agents and a report will list which ones are best.

    So YES, talk to the doctor BEFORE surgery and request that this be done.
  • CDS1037
    CDS1037 Member Posts: 3
    #10
    daisy366 said:

    Assay
    As Trish mentioned, the will test the tumor with many chemo agents and a report will list which ones are best.

    So YES, talk to the doctor BEFORE surgery and request that this be done.

    Thanks for the information and support/ Update
    Cleo......I will try my best to stay positive and determined for Mom and definitely will "read nothing" online. I had a very bad day on the day I did that....
    I am so happy for you and your story has given me so much encouragement that my Mom can get through this. My Mom has the same type as you and now you are 5 years NED...so wonderful!! She also got it with no family history at all. The MD said something interesting at her appointment on Wednesday....he said her cancer was not genetic related or hormonal related. Thank you again for sharing with me....I appreciate it so much....

    Trish and Daisy...thanks for the information on the tissue assay test. I'll be sure to email her doctor and request this be done.

    Connie.....Thank you for the good wishes for Mom......I am sending those good wishes and good energy right back to you....be well.....

    Mom got her medical clearance on Thursday for surgery. She also has Atrial Fibrillation but they are all well aware of that and the clearance was given. She has 3 CT scans coming up before the surgery...pelvis, abdomen and chest, then the surgery will be Friday, Sept. 21st. Please add Carol ( Mom) to your prayers this week. A big thank you to all of you...I'm so glad I found my way here..you are all so wonderful and I appreciate the comforting and positive words so very much. Cindi
  • Teamkelly
    Teamkelly Member Posts: 63
    #11
    cleo said:

    2007. Carcino sarcoma
    2007. Carcino sarcoma through uterus to bladder and lymph nodes at age 67. 3C/4. No family history etc..out of the blue. Have just had the 5 year CT scan, NED, and I am certainly not the only one out there Read nothing!! Be positive and determined.

    Cleo, What kind of treatment?
    Cleo, so happy to hear your report!!! Praise God! My sister in law was just diagnosed with CS 3C1. Can you tell me what your treatment was? Her doc is rec. 6 rounds of carbo/taxol and no radiation, it was in the abdominal wash and in 1 lymph node, all the way thru to myometrial of the uterus. We have appt at -Sloan Kettering on the 5th.

    Thanks,
    Nicki
  • cleo
    cleo Member Posts: 144
    #12
    Teamkelly said:

    Cleo, What kind of treatment?
    Cleo, so happy to hear your report!!! Praise God! My sister in law was just diagnosed with CS 3C1. Can you tell me what your treatment was? Her doc is rec. 6 rounds of carbo/taxol and no radiation, it was in the abdominal wash and in 1 lymph node, all the way thru to myometrial of the uterus. We have appt at -Sloan Kettering on the 5th.

    Thanks,
    Nicki

    Treatment
    Nicki I do not live in the states and my treatment differed to that of other contributors. I 'check in' because I have learnt a lot from this site with regard to chemo but am not much help re treatment regimen. I hope that all goes well for your sister-in-law. Celia
  • RoseyR
    RoseyR Member Posts: 471 Member
    #13
    cleo said:

    Treatment
    Nicki I do not live in the states and my treatment differed to that of other contributors. I 'check in' because I have learnt a lot from this site with regard to chemo but am not much help re treatment regimen. I hope that all goes well for your sister-in-law. Celia

    PLEASE LET US KNOW MORE ABOUT YOUR TREATMENT!

    Cleo,

    Precisely BECAUSE you have survived so long NED, others who have uterine carcinosarcoma would love to know HOW your treatment may have differed from our own. Perhaps because you DON'T live in the states, you had better treatment.

    To have survived stage IIIC without a recurrence for five years is astounding.

    Did you have ANY chemo? ANY radiation? Have you followed any sort of special diet since your diagnosis?

    Appreciatively,
    Rosey

Discussion Boards