concerns

mdad85
mdad85 Member Posts: 15
edited March 2014 in Uterine/Endometrial Cancer #1
As some of you already know, My wife was diagnosed with stage 4 b Uterine cancer a few months ago, she had complete hysterectomy, and she elected to not have treatment.

Lately she has been coughing, had stomach pains, said her hips hurt and headaches.she says the pain in her side is like apendix pain, but she lost that a few tears ago, tomorrow she goes for a CT scan so we can get an Idea if it has spread. I think she has finally accepted the fact that there is not much anyone can do for her But it took the Dr last week just coming out and asking her bluntly, why are you here, what do you want me to do, If you won't let me treat you. I think that finally opened her eyes to this.Not sure what I'm asking, I guess I just needed to express myself and get this off my chest.
I'm assuming at this time that all these pains and things she is having is from the cancer since it's had since november to grow with noone bothering it.

Thanks for listening


Jim

Comments

  • jazzy1
    jazzy1 Member Posts: 1,379
    #2
    Help
    Jim,

    Oh I do feel for you and hope your wife can get thru the aches and pains. I'm not sure if her cancer was or was not contained? I'm assuming with a stage 4b it's more advanced and moved to different areas. Might I ask where else it was found?

    I was also diagnosed with uterine 3C and mine was contained inside uterus with 2 small tumors and only in 1 of 25 lymph nodes removed. I thought I wouldn't need treatments but my doctor told me he would never suggest no treatments as he must make sure it's not hiding elsewhere. So...I had no choice but to endure the chemo and radiation treatments. In the end 8 months out from treatments I'm cancer free...just had appt today.

    Why is your wife not wanting treatments? Possibly get a second opinion would help?

    Wish you both well, but try to open your wife's eyes to why the treatments could save her life. Pains might mean it's still moving.

    Best to you.
    Jan
  • Ro10
    Ro10 Member Posts: 1,561 Member
    #3
    Sorry to hear about your wife
    Jim I would hope the doctor would help your wife be comfortable is she is having pain. Also to make her comfortable with any other discomfort she is having. If your current doctor cannot do these things maybe you need to find another doctor. Even though your wife does not want chemo or radiation, she should be able to be comfortable. If the cancer has spread more, you may want to think about hospice. Hospice can offer so many things to both you and your wife. In peace and caring.
  • TiggersDoBounce
    TiggersDoBounce Member Posts: 408
    #4
    Jim
    So sorry to hear your wife is suffering.

    Prior to my diagnosis I had terrible pain in the area behind the belly button which would come every day for between 1-2 hrs. What it turned out to be was the cancer invading my uterine muscle.

    Do you think she might now be receptive to treatment? It might not be too late to get her started on a protocol...

    If she still wants to go no treatment, they need to offer her pallative care.

    Hang in...I know how going tough the treatments can be to go through, I cannot imagine how tough this is on both of you choosing not to...

    Sending prayers and hugs,

    Laurie
  • Cindy Bear
    Cindy Bear Member Posts: 569
    #5
    Hi Jim
    Dear Jim. I am so sorry , I know this must be devastating for you. My mother was diag. with Stage IVB endiometrial cancer in Feb. 09 and passed away 4 mos into treatment. So I can understand your wife's feelings probably a lot more than other posters here. The fact that they could do surgery on your wife is a good thing. They told my mother she wasn't a candidate for surgery at least not up front. They were doing some chemo (Carbo and taxol) and told us midpoint she was fine . They were going to do 2 more rounds and then look at surgery. She never made it. I am guessing the 35 they are talking about it the CA-125 blood test they do. Any reading under 35 is considered normal and your wife is at 40. However this test is not very accurate for uterine cancer. The highest my mother's was (prior to any treatment at all) was a 58. With Stage IV cancer, that no. should have been much higher. The lowest it got was a 21. I wouldn't pay too much attention to that number.
    Good luck and please let us know how she is doing and what she decides.
  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    #6
    Concerns
    I understand how your wife could decide not to seek treatment but there is help out there for her. Her pain and symptoms need to be addressed. She shouldn't have to suffer. Her doctor should be able to refer her to a pain specialist. My Mom died of uterine cancer. I am a 3 month survivor of uterine cancer. My Mom had a wonderful radiologist/oncologist who was certified in hospice care as well. This doctor managed my Mom's symptoms as the cancer spread. I think that some oncologists if they don't treat patient with chemo or radiation they get frustrated and don't want to work with the patient anymore. Maybe the American Cancer Society help line can recommend some local phyisian and resources. There are private Care Managers who are hired by families to assess total needs and make recommendation and coordinate services. These care managers are advocates for the people who hire them. They can assess your wife's needs in your home. I have used a geriatric care manager for my Dad and they were angels! Please keep in touch with us and let us know how you and your wife are doing. Quality of life is important and that may be one reason why your wife decided to forego treatment. It is so hard....
    You are both in my prayers that help will soon be there for you both.
    Lori
  • jazzy1
    jazzy1 Member Posts: 1,379
    #7
    Cindy Bear said:

    Hi Jim
    Dear Jim. I am so sorry , I know this must be devastating for you. My mother was diag. with Stage IVB endiometrial cancer in Feb. 09 and passed away 4 mos into treatment. So I can understand your wife's feelings probably a lot more than other posters here. The fact that they could do surgery on your wife is a good thing. They told my mother she wasn't a candidate for surgery at least not up front. They were doing some chemo (Carbo and taxol) and told us midpoint she was fine . They were going to do 2 more rounds and then look at surgery. She never made it. I am guessing the 35 they are talking about it the CA-125 blood test they do. Any reading under 35 is considered normal and your wife is at 40. However this test is not very accurate for uterine cancer. The highest my mother's was (prior to any treatment at all) was a 58. With Stage IV cancer, that no. should have been much higher. The lowest it got was a 21. I wouldn't pay too much attention to that number.
    Good luck and please let us know how she is doing and what she decides.

    Such a tough spot..
    Jim, I'm so sorry you're in this situation -- To have the memories of family going thru some sort of cancer and passing...just hard to take out of your mind.

    All you can do is what you're doing...be there for her and let the docs guide you. In the end it's her choice.

    The CA125 is a tumor marker that is used with many gynocological cancers mainly ovarian. Even at that it's different for everyone, as some with ovarian for example, might always have a very high number, but not show any cancer.

    Plse keep us posted and best to you and your family!
    Jan
  • mdad85
    mdad85 Member Posts: 15
    #8
    jazzy1 said:

    Help
    Jim,

    Oh I do feel for you and hope your wife can get thru the aches and pains. I'm not sure if her cancer was or was not contained? I'm assuming with a stage 4b it's more advanced and moved to different areas. Might I ask where else it was found?

    I was also diagnosed with uterine 3C and mine was contained inside uterus with 2 small tumors and only in 1 of 25 lymph nodes removed. I thought I wouldn't need treatments but my doctor told me he would never suggest no treatments as he must make sure it's not hiding elsewhere. So...I had no choice but to endure the chemo and radiation treatments. In the end 8 months out from treatments I'm cancer free...just had appt today.

    Why is your wife not wanting treatments? Possibly get a second opinion would help?

    Wish you both well, but try to open your wife's eyes to why the treatments could save her life. Pains might mean it's still moving.

    Best to you.
    Jan

    Where it s at
    The surgeon said the cancer was on almost every organ, that he had to physcially pull it off the organs,said he got as much as he could see, 3 1/2 surgery took over 5 hrs
    She has seen my sister take Chemo in sept when she was diagnosed and we buried her in Jan this year, cousin in Aug and aunt last may, they all took chemo and was sick and died anyway, Plus the dr told her it s not cureable, she says why be sick.
    we have talked with our family dr and he suggested she try it , said she could always stop if she couldn't handle it, same thing the surgeon told her and the cancer Dr.
    Just took her in to get her eye s checked yesterday and found out she had lost the site in her right eye due to a big Cateract, she is scheduled on the 5 th for that, also she had to have blood work and EKG, EKG came out with something, but heart Dr said not to worry about it, then the blood work came in, they said she is suppose to be a 35 but she s a 40, don't have any idea what they are talking about, my daughter took her today.I'm at a complete loss.

    Thanks for your ear, sorry to be such a bother
    Jim

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