Stage 4b UPSC

donnaparamore
donnaparamore Member Posts: 12
in Uterine/Endometrial Cancer #1

My 71 year old mother was just diagnosed last Wednesday...looking for any information from anyone....

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Comments

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
    edited May 2016 #2
    If you do a search of UPSC

    If you do a search of UPSC you will find a wealth of information.  I'm Stage II, Grade 3 UPSC.

    Love,

    Eldri

  • Sandy3185
    Sandy3185 Member Posts: 229 Member
    #3
    Slow down and take a deep breath!

    This site contains a wealth of information. Do a search here for UPSC and you will get a lot of up to date information. DONT go on the Internet, most of the information is outdated and will scare the Bejesus out of you both!

    I am 70 years old and was diagnosed in 2013 with UPSC stage II grade 3. It's been two years since I completed treatment and, to date, I am cancer free. Lately there have been quite a few new treatment options and every reason to believe your mom will be saved. UPSC is a serious and aggressive form of uterine cancer and your mom will need to prepare herself for a difficult course of treatment over the next few months. 

    There are some thing you can do to help your mom- write down all your questions and your moms questions before her next appointment. Go with her and take notes, as this is such a stressful time and neither of you will be able to remember everything the doctor tells you. This is one of the most difficult times in your mom's course of treatment, the waiting and not knowing. Please take advantage of the information and compassion you can find here! Love and hugs, Sandy

  • debrajo
    debrajo Member Posts: 1,095 Member
    #4
    UPSC

    I am UPSC also.  There are a lot of us here!  Just search the threads here then ask us anything.  NOTHING is off topic or TMI here!!  Let us know what you need to know for her.  Best, Debra(Jo)

  • donnaparamore
    donnaparamore Member Posts: 12
    edited May 2016 #5
    Sandy3185 said:

    Slow down and take a deep breath!

    This site contains a wealth of information. Do a search here for UPSC and you will get a lot of up to date information. DONT go on the Internet, most of the information is outdated and will scare the Bejesus out of you both!

    I am 70 years old and was diagnosed in 2013 with UPSC stage II grade 3. It's been two years since I completed treatment and, to date, I am cancer free. Lately there have been quite a few new treatment options and every reason to believe your mom will be saved. UPSC is a serious and aggressive form of uterine cancer and your mom will need to prepare herself for a difficult course of treatment over the next few months. 

    There are some thing you can do to help your mom- write down all your questions and your moms questions before her next appointment. Go with her and take notes, as this is such a stressful time and neither of you will be able to remember everything the doctor tells you. This is one of the most difficult times in your mom's course of treatment, the waiting and not knowing. Please take advantage of the information and compassion you can find here! Love and hugs, Sandy

    We have been told that she

    We have been told that she cannot have surgery...that radiation will not work and at this point only one of her kidneys is functioning so chemo would not add to the quality or quantity of her life..do you know where I can find info on prognosis.  We have a follow up next week where the doctor wants to talk about hospice.  

     

  • Kvdyson
    Kvdyson Member Posts: 790 Member
    #6
    donnaparamore said:

    We have been told that she

    We have been told that she cannot have surgery...that radiation will not work and at this point only one of her kidneys is functioning so chemo would not add to the quality or quantity of her life..do you know where I can find info on prognosis.  We have a follow up next week where the doctor wants to talk about hospice.  

     

    Seek out a second opinion

    Donna, please consider getting a second (expert) opinion at a large cancer center. There are so many new types of treatments being discovered every day. Only looking at surgery, chemo and radiation as treatment options is like only looking at the appetizer menu at a restaurant. I'm sure your mom's doctor would agree that it could not hurt to get at least one more opinion before moving to hospice. Please know that we are here to support you and your mom in whatever you choose. Wishing you strength and peace, Kim

     

  • brissance
    brissance Member Posts: 192
    #7
    Stay Strong

    No matter the prognosis, no one knows the outcome.  You can read on this board where many women in your mom's condition and worse have beat all odds.  Stay strong and continue the support.  If you and your mom feel it is appropriate, seek another opinion.  Stay strong. You are being a great daughter.

  • Editgrl
    Editgrl Member Posts: 903 Member
    #8
    Second opinion

    I would also suggest getting a second opinion from outside your current health/medical group.  Even in what seem to be the most advanced cases, sometimes another doctor can see a more hopeful option.  Check nearby large cancer centers to start with.  And again, there are several on this board who were also diagnosed with Stage 4 and they are still here!  

  • donnaparamore
    donnaparamore Member Posts: 12
    #9
    Editgrl said:

    Second opinion

    I would also suggest getting a second opinion from outside your current health/medical group.  Even in what seem to be the most advanced cases, sometimes another doctor can see a more hopeful option.  Check nearby large cancer centers to start with.  And again, there are several on this board who were also diagnosed with Stage 4 and they are still here!  

    This was a second opinion at

    This was a second opinion at a totallly different hospital. At a large cancer center...trying to stay positive but it is hard..my Mom had two appointments today...one with her cardiologisit and the other with her PCP that was already scheduled.  We were basically told not to waste alot of time going to alot of drs appointments outside of her oncologist.  

  • donnaparamore
    donnaparamore Member Posts: 12
    #10
    Kvdyson said:

    Seek out a second opinion

    Donna, please consider getting a second (expert) opinion at a large cancer center. There are so many new types of treatments being discovered every day. Only looking at surgery, chemo and radiation as treatment options is like only looking at the appetizer menu at a restaurant. I'm sure your mom's doctor would agree that it could not hurt to get at least one more opinion before moving to hospice. Please know that we are here to support you and your mom in whatever you choose. Wishing you strength and peace, Kim

     

    This was a second opinion at

    This was a second opinion at a totallly different hospital. At a large cancer center...trying to stay positive but it is hard..my Mom had two appointments today...one with her cardiologisit and the other with her PCP that was already scheduled.  We were basically told not to waste alot of time going to alot of drs appointments outside of her oncologist. 

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
    #11
    She was just diagnosed this

    She was just diagnosed this last Wednesday and she's already had a second opinion?  Were they from the same cancer center but different hospitals/doctors?  If so, you might want to collect all her records and send them to a different cancer center for them to review.  

    Love,

    Eldri

  • donnaparamore
    donnaparamore Member Posts: 12
    #12
    EZLiving66 said:

    She was just diagnosed this

    She was just diagnosed this last Wednesday and she's already had a second opinion?  Were they from the same cancer center but different hospitals/doctors?  If so, you might want to collect all her records and send them to a different cancer center for them to review.  

    Love,

    Eldri

    she was diagnosed with

    she was diagnosed with uterine cancer April 12th...we got a second opinion and got the stage IVB diagnosis on May 18th after a CT scan.  

  • donnaparamore
    donnaparamore Member Posts: 12
    edited May 2016 #13
    EZLiving66 said:

    She was just diagnosed this

    She was just diagnosed this last Wednesday and she's already had a second opinion?  Were they from the same cancer center but different hospitals/doctors?  If so, you might want to collect all her records and send them to a different cancer center for them to review.  

    Love,

    Eldri

    After the first diagnois I

    After the first diagnois I got all of the records and went to a differnt center with different doctors...not in the same system.  

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    #14
    donnaparamore said:

    After the first diagnois I

    After the first diagnois I got all of the records and went to a differnt center with different doctors...not in the same system.  

    Donna

    http://csn.cancer.org/node/299313

    Please read this posting from takingcontrol58. Her story is amazing and may provide you much needed information.

    Love and Hugs,

    Cindi

  • debrajo
    debrajo Member Posts: 1,095 Member
    #15
    Has anyone mentioned diet?

    So much negativity with these doctors!  Did they mention diet, supplements(Curcurum, biopene, the Metformin as mentioned by Teddy&bears)?  It may not stop the UPSC, but then again it could and give her a better quality of life.  Hospice seems a little early to me!  Best, DebraJo

  • Kvdyson
    Kvdyson Member Posts: 790 Member
    #16
    donnaparamore said:

    This was a second opinion at

    This was a second opinion at a totallly different hospital. At a large cancer center...trying to stay positive but it is hard..my Mom had two appointments today...one with her cardiologisit and the other with her PCP that was already scheduled.  We were basically told not to waste alot of time going to alot of drs appointments outside of her oncologist. 

    Targeted / Immuno Therapies

    Oh Donna, I can only imagine how you and your Mom are feeling right now. Did any of the doctors mention trials of targeted and/or immuno therapies? There are so many trials going on right now that it seems that she should be eligible for at least one. Please know that I only ask to be sure that you have all the possibilities available for your Mom. No judgement. Just information. I pray that whatever decisions she makes gives you all peace.

     

  • donnaparamore
    donnaparamore Member Posts: 12
    #17
    Kvdyson said:

    Targeted / Immuno Therapies

    Oh Donna, I can only imagine how you and your Mom are feeling right now. Did any of the doctors mention trials of targeted and/or immuno therapies? There are so many trials going on right now that it seems that she should be eligible for at least one. Please know that I only ask to be sure that you have all the possibilities available for your Mom. No judgement. Just information. I pray that whatever decisions she makes gives you all peace.

     

    We have an appointment on

    We have an appointment on next Wednesday with the Oncologist...I have compiling a list of questions now...and will include the trials of targeted and/or immuno thearpies questions...Thank you for the information.

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
    edited May 2016 #18
    donnaparamore said:

    We have an appointment on

    We have an appointment on next Wednesday with the Oncologist...I have compiling a list of questions now...and will include the trials of targeted and/or immuno thearpies questions...Thank you for the information.

    Please let us know what the

    Please let us know what the oncologist says and if there are any trials she can get into.  We care!!

    Love,

    Eldri

  • donnaparamore
    donnaparamore Member Posts: 12
    edited May 2016 #19
    EZLiving66 said:

    Please let us know what the

    Please let us know what the oncologist says and if there are any trials she can get into.  We care!!

    Love,

    Eldri

    Thank you so much...this is

    Thank you so much...this is truly a scary time for us....

  • pinky104
    pinky104 Member Posts: 574 Member
    #20
    donnaparamore

    I saw your e-mail a few days ago, but this is the first chance I've had to reply.  I was diagnosed with stage IVb UPSC six years ago.  I had surgery and chemo with carboplatin and taxol, and I've been considered NED ever since then (although I had a brief scare with a mass that turned out not to be cancerous almost two years ago). My cancer was in my uterus, both ovaries, the omentum, and the small intestine.  It was considered stage IVb only because it had "gone out of the pelvis."  I suppose there are all kinds of stage IVb patients with a much worse spread of their cancers than I had.  None was found in my lymph nodes, so I was lucky there.  How far had your mother's cancer spread that the doctors are so negative about her going for further treatment?  My doctor, who is at St. Peter's Hospital in Albany, NY (their Women's Cancer Care Center) told me that he's had plenty of stage IV cancer patients who are in remission.  Both he and his partner are excellent gyn/onc's.  His partner is considered the real expert, but he took great care of me when his partner was booked up, so I'm glad I went with him.  I know he sees people from across the state, and he's probably booked up until August right now.  I hate to just see doctors give up on patients when there are so many of us being treated successfully. 

  • donnaparamore
    donnaparamore Member Posts: 12
    edited June 2016 #21
    pinky104 said:

    donnaparamore

    I saw your e-mail a few days ago, but this is the first chance I've had to reply.  I was diagnosed with stage IVb UPSC six years ago.  I had surgery and chemo with carboplatin and taxol, and I've been considered NED ever since then (although I had a brief scare with a mass that turned out not to be cancerous almost two years ago). My cancer was in my uterus, both ovaries, the omentum, and the small intestine.  It was considered stage IVb only because it had "gone out of the pelvis."  I suppose there are all kinds of stage IVb patients with a much worse spread of their cancers than I had.  None was found in my lymph nodes, so I was lucky there.  How far had your mother's cancer spread that the doctors are so negative about her going for further treatment?  My doctor, who is at St. Peter's Hospital in Albany, NY (their Women's Cancer Care Center) told me that he's had plenty of stage IV cancer patients who are in remission.  Both he and his partner are excellent gyn/onc's.  His partner is considered the real expert, but he took great care of me when his partner was booked up, so I'm glad I went with him.  I know he sees people from across the state, and he's probably booked up until August right now.  I hate to just see doctors give up on patients when there are so many of us being treated successfully. 

    Thank you for this

    Thank you for this informaiton.  The cancer has spread to the lymp nodes...there is a spot on her lungs...it is also on the pelvic sidewall...although I have had 2 friends who are MDs to go over the report with me...I still dont know if I have everything accurate.  Over the weekend I sent her gyn onc some questions that I had as we will be seeing her on tomorrow.  We are not too far from Texas...I am considering going to MD Anderson.  

    My mother is still bleeding...I asked her about this and was told she could get radiation to help with the bleeding

    I asked about clinical trials...was told that there were not any in this area but I could check other places around the county.

    Asked about prognosis...she said is was poor...not sure what that means exactly.  

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