"uncureable" endometrial cancer

My mother had a complete hysterectomy almost two years ago.  At that time the doctors told her that she was clear of any cancer and that it had been confined to the uterus.  Not too long after that her cancer was "recurrent" and she went through a round of chemo - they really wanted to operate at that time (Jan 2007), but she also has CLL (chronic lymphocytic leukemia - which is in remission). The chemo that she had finished for this (nearly a year before her hysterectomy) really threw her white count for a loop and her white count was not good enough to risk having a surgery.

This chemo did not work. Neither did the oral hormone medicines (I forget the names of these - maybe tamoxofin and megase?).  She finally had surgery in October of 2007.  The cancer was large and was spread around her entire abdomen. She had to have a colostomy done during surgery due to the placement of the tumors.

She had 10 days of radiation about 8 weeks after her surgery.

Within two months all of the cancer had grown back. She started on a chemo that attacked her hemoglobin, whites and platelets so badly that they could not get the recommended doses in.  

She finally had another CT scan done about 1 month ago showing that there are now tumors and/or lesions everywhere - all through her abdomen, spleen, lungs, liver, etc.

My mother does not ask enough questions and she does not want to know what her prognosis is.  She is going to do whatever her oncologist tells her to do without question because he is the doctor.  

She has started on yet another kind of chemo (I beleive Doxil). She has had one dose and will get another one next week.

 I have no idea what "stage" cancer her's was considered at the time of surgery because she didn't ask.  I know that she can't have long to live but really have no idea.  I wish that I could talk to her more about this, but she has made it quite clear that she does not want to know her prognosis.

Sorry this is so long.  Is there anyone out there who has gone through anything like this and has any information or words of wisdom for me?

Thank you so much for reading,

caringk 

She  

Oh, Lord! Nothing's more frustrating than a patient who refuses to take an interest in their own treatment!

"Are you in pain?"  "Eh."

"Do you have any questions?" {shrugs}

I sometimes feel like my little brother (okay, he's 54) is sicker than he needs to be and he's deliberately deserting the family. And I say I feel that way because I know it's not rational, but I just get a stomachache and tightness in the chest when I think about it.

I guess my situation is better than yours because I'm the big sister and he's used to me bullying him...

Clearly, your mother is Stage IV now.  Can you go with her to the doctor and ask the questions for her? 

A bad prognosis takes some time to accept.  I am sure that she really knows what is going on at some level, but may not be able to talk about it yet.  Be sure that the doctor is not God and cannot know how much time she has left, etc.  You might ask her if there is anything you can help her do . . .sometimes people are grateful for help in things they have left undone, because none of us really know how long we will live.

Thanks for all of your responses!

Yes, I will be going with my mother for her next two doctor appointments, but only because I am a teacher and am on break.  We live 4 states away. I will talk to the doctor (and have before without my mom around), but don't know if I should ask those tough questions with her there or not.  She has told me point blank that she is going to do whatever the doctor wants her to do and that she does not want to know what her prognosis is.  I would feel like I was betraying that wish if I asked the doctor with her in the office.

  I totally agree that everything is in God's control.  I know that he has prepared a way for all of us and have complete faith that however this plays out is how God has designed it too.  Unfortunately, that does not make it easier to watch my mom suffer and it also doesn't make it easier to carry the burden of knowing how bad her cancer is, knowing what the doctor thinks her lifespan could be, and knowing that her cancer is uncureable.  She still talks about being able to go back to work, but currently can't even climb a flight of stairs without being completely out of breath and exhausted - it's really quite sad.

 Thanks for listening,

Kristina 

On 6/25/2008 caringk wrote:

My mother had a complete hysterectomy almost two years ago.  At that time the doctors told her that she was clear of any cancer and that it had been confined to the uterus.  Not too long after that her cancer was "recurrent" and she went through a round of chemo - they really wanted to operate at that time (Jan 2007), but she also has CLL (chronic lymphocytic leukemia - which is in remission). The chemo that she had finished for this (nearly a year before her hysterectomy) really threw her white count for a loop and her white count was not good enough to risk having a surgery.

 

This chemo did not work. Neither did the oral hormone medicines (I forget the names of these - maybe tamoxofin and megase?).  She finally had surgery in October of 2007.  The cancer was large and was spread around her entire abdomen. She had to have a colostomy done during surgery due to the placement of the tumors.

She had 10 days of radiation about 8 weeks after her surgery.

 

Within two months all of the cancer had grown back. She started on a chemo that attacked her hemoglobin, whites and platelets so badly that they could not get the recommended doses in.  

 

She finally had another CT scan done about 1 month ago showing that there are now tumors and/or lesions everywhere - all through her abdomen, spleen, lungs, liver, etc.

 

My mother does not ask enough questions and she does not want to know what her prognosis is.  She is going to do whatever her oncologist tells her to do without question because he is the doctor.  

She has started on yet another kind of chemo (I beleive Doxil). She has had one dose and will get another one next week.

 I have no idea what "stage" cancer her's was considered at the time of surgery because she didn't ask.  I know that she can't have long to live but really have no idea.  I wish that I could talk to her more about this, but she has made it quite clear that she does not want to know her prognosis.

 

Sorry this is so long.  Is there anyone out there who has gone through anything like this and has any information or words of wisdom for me?

 

Thank you so much for reading,

caringk 

She  

Hello Caringk,  Sounds like you are really a caring person.  I went through about everything your mother has.  The only difference is that my oncologis chose not to try to remove my cancer when he did surgery, because he would have had to put a bag for urine, as well as a colostomy bag.  He chose a better quality of life for me (I think).  Anyway, my last chemo, after about three others, and 25 radiation treatments, was doxil.  Even though this chemo is reported to work slowly, my doctor decided to stop it because the toll it was taking on my body was not worth any good it might do.  My last CT scan showed a growth of about the width of a pencil to my cancer.  Located where it is, my biggest problem is going to the bathroom, but I manage day by day.  I have no idea what my prognoses is, but I believe in doing everything medically possible than leave it in the hands of God.  Right now I am just trying to keep the pain under control.  I do not expect a doctor to tell me how long I have to live, because as they say I did not come with an expiration date stampted on the bottom of my foot.  Right now, as long as I keep the pain somewhat under control, I feel fairly good.  I am working on a couple of baby quilts, my nephew and his wife are expecting twin girls toward the end of next month.  There is no way I will have the quilts finished, but maybe when her girls get older they will have quilts to play with their babydolls.  LOL.  Keep your chin up, care for your mom, and try to get her interested in doing something different.  Hope my rambling has helped you in some way.  Sincerely, lindykate