Update on Mom

minky1225
minky1225 Member Posts: 70
edited March 2014 in Ovarian Cancer #1
Hi everyone. Just wanted to update everyone on Mom's condition. After 4 long months in the hospital, she was released into a nursing care/rehabilitation facility to start trying to get back to a normal life. She was only there for about a month when she started getting pains back in her lung area. We had her go back to the hospital on May 25th. We were nervous that her pleural effusion had come back. They did a full chest scan and found no pleural effusion (wonderful) but her gall bladder was massive and inflamed. After three different doctor opinions, they decided that they were going to remove it. Prior to the surgery, Mom was doing great in the hospital, even with the gall bladder discomfort. Her blood levels got back to normal and they were considering doing chemo-she is about 2 months overdue since they had problems with the blood. She was getting up and walking around, she went to the gift shop in the hospital by herself which is a HUGE deal! her CA-125 started out over 4000 in January and is now 37.0!!! Things were going in the right direction. Now, they removed her gall bladder 4 days ago and she had a problem getting her oxygen levels up. They got her stabilized but this morning it dropped to 40%. They put her on the nasal canula and now it is back into the 90-94% range. I don't know why all of this is happening since removing the gall bladder. She was doing so well. She can get quite confused, I'm assuming a mixture of the painkillers and lack of oxygen. I just hate this constant up and down. It's exhausting.

I still have not gotten any answers from the doctors, her oncologist will not call me back, her primary doctor is wonderful but has a very heavy accent and I cannot understand him all the time. Plus, her primary doctor will not comment on her chemo treatments since he is not an oncologist. After 6 months, I still have not gotten an answer as to why they will not operate on her, how big her tumors are, if they've shrunk since doing chemo. They did tell me that she is beyond the debulking surgery point but not too sure why or if they can operate if everything shrinks. I am also confused as to what ascities are and why they say its so bad that she has it in her abdominal cavity.

I would love to just return back to normal life. Hubby and I have a vacation planned in Sept. that I have been looking forward to laying on a beach. I'm not sure if I should postpone this trip or try to maintain a normal 29 year old life.

As always, thank you wonderful ladies for listening.

Comments

  • Barbara53
    Barbara53 Member Posts: 652
    #2
    gall bladder
    My Mom had her gall bladder taken out laparascopically a couple of months ago, and it was no big deal. The gall bladder did not look too bad, but the docs did find some cancer when they were doing the procedure.

    On the ascites, that's fluid accumulation in the abdomen caused by cancer cells, and usually surgery is not done when ascites are present. Your mother must have had a really bad gall bladder for them to go in and do the procedure.

    I suggest calling your mother's oncologist's nurse or PA and start talking with them. Do you have health care proxy for your mother? If you don't, they will have forms at the nurse's station at the hospital. That will give you full access to her medical information, so you will be on firm ground asking for a full report.
  • msfanciful
    msfanciful Member Posts: 559
    #3
    Hi,
    First I hate to hear you
    Hi,

    First I hate to hear you are experiencing such lack of communication from your mother's doctors.

    The fact that no one is giving you answers of any sort is frightening in itself. You must know what is going on with your mother's cancer in every way. This cannot be minimized because you and your mother have every right to know what is happening to her body in regards to her surgery and her cancer, so you can be more informed as to how to fight this cancer.

    You have truly struck a pet-peeve with me, because 6-months literally can make the difference between life and death. How dare no one respond to you! ! !

    Ascities are fluid build-up that is directly caused by the cancer.

    I am truly concerned for you and your mother. Do you even know what stage you mother is in?

    If I were in your shoes, I would absolutely demand informative answers, solutions.

    As I have survived my ovca for over 3 years now, I do know that having an open communication with my oncologist and all parties involved is what makes the difference of extending one's life. I downright demand it.

    Since you didn't provide details about the tumors,chemo I don't know what to say about them or the debulking surgery?

    Please again do not wait, demand answers today!

    Please be strong through this and I think you will get the respect/response you must have from the individuals.

    Sharon
  • minky1225
    minky1225 Member Posts: 70
    #4
    msfanciful said:

    Hi,
    First I hate to hear you
    Hi,

    First I hate to hear you are experiencing such lack of communication from your mother's doctors.

    The fact that no one is giving you answers of any sort is frightening in itself. You must know what is going on with your mother's cancer in every way. This cannot be minimized because you and your mother have every right to know what is happening to her body in regards to her surgery and her cancer, so you can be more informed as to how to fight this cancer.

    You have truly struck a pet-peeve with me, because 6-months literally can make the difference between life and death. How dare no one respond to you! ! !

    Ascities are fluid build-up that is directly caused by the cancer.

    I am truly concerned for you and your mother. Do you even know what stage you mother is in?

    If I were in your shoes, I would absolutely demand informative answers, solutions.

    As I have survived my ovca for over 3 years now, I do know that having an open communication with my oncologist and all parties involved is what makes the difference of extending one's life. I downright demand it.

    Since you didn't provide details about the tumors,chemo I don't know what to say about them or the debulking surgery?

    Please again do not wait, demand answers today!

    Please be strong through this and I think you will get the respect/response you must have from the individuals.

    Sharon

    Thanks for the answers ladies
    I called the oncologist several times today and finally got him on the phone with some answers. It did put my mind at ease...for now. Mom does have stage IV cancer and the doctor said that he believes that Mom's discomfort is because of her gall bladder surgery. Her confusion is most likely due to too many meds at one time. They called in pain management for her today so that they can put her on a different regimen of drugs. He said that her oxygen was probably low because Mom has been shallow breathing and not accessing the bottom lobes of her lungs-all due to the after-pain from the surgery. He assured me that she is stable. As far as her cancer, He said he is very impressed to how well she is responding to chemo. He told me that with ovarian cancer, his patients tend to be either platinum responsive or non platinum responsive. Mom is platinum responsive and doing well with the taxol/carbo treatments. As far as debulking surgery, he said there is no need for it as long as the tumors keep shrinking. I asked him so many questions that I cannot remember the answers to everything and was outside so I did not have a pen and paper handy-damn I was stupid for that one..

    Ughhh, this emotional roller coaster stinks.
  • msfanciful
    msfanciful Member Posts: 559
    #5
    Hi Jen,
    As for not having a
    Hi Jen,

    As for not having a pencil handy, that's always hind-sight. Just have on for the next time you speak with the doctor. :-)

    This is great news, at least now you know what exactly is happening to your mom.

    Everything about his explanation sounds pretty solid. Although I just have one question...at some point and time (I assume when your mom heals from the gall-bladder surgery) is debulking surgery going to be considered at all?

    I ask this because if your mother has ovarian cancer, the source of the cancer are her ovaries right?

    So from my understanding (I've had debulking surgery in 2007) and am glad I did; at some point she is considering having them removed right? Because as long as they remain they can create a problem (fluid build-up, spreading more cancer cells to the organs, lymph-nodes, etc.) If she is a stage IV, they WILL have to come out. I would just check.

    At least you have answers and that's a great start to peace of mind.

    Stay vigilent and stay strong,

    Sharon

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