Unknown cancer

morgd
morgd Member Posts: 3
edited March 2014 in Rare and Other Cancers #1
My Mom was diagnosed Oct 2003 with cancer. They originally found a growth in her bone above her knee. They removed the growth and advised us that it did not have the charactaristics of cancer. However, they sent the piece of bone and tumor to the Mayo Clinic. The said they thought it was cancer but not bone cancer. Her doctors here have tested her for everything they can think of. They have found nothing abnormal other than her iron levels in her blood are very low and a dark spot on her liver. Her liver & pancreas functions are normal. They are giving her blood transfusions every so often. In the course of about 2 months she lost a bunch of weight, which I know is normal. Anyway, her liver is very swollen she has terrible pain in her lower back (nothing else has shown up on bone scans) and hips and upper legs. They have tried chemo to treat breast, liver & pancreatic cancer. Nothing has seemed to work. She is now on an experimental drug that stops the growth of cancer cells. Her doctor has said they have a couple more experimental drugs they could try but they are very hard on the body. She did have a second opinion and that doctor didn't see anything different. We are almost wondering if it is some sort of blood disease that mimicks cancer. I'm afraid she doesn't have much time left as she is only skin & bones. If anybody has a suggestion I would appreciate a response. God Bless all of you!!!

Comments

  • isletcell
    isletcell Member Posts: 61 Member
    #2
    Has she had a PET scan?? Theese scans can be helpfull in detecting cancer. I had ultra sounds and ct scans and they missed my tumor.My blood tests were also normal. Finally the 2nd ultra sound and the following ct scan detected it. "human error" I got a PET scan following this and the tumor lit up. I would look into this and get a third opinion; until you feel satisfied that you know what this is. There are doctors out there who can explain things very well and will take the time with you to help you understand. I asked my surgeon for a referal and he was not offended in any way infact he recomended another expert and gave me coppies of my complete chart. When you are dealing with rare cancers the more opinions the better. Just remember that the squeaky wheel gets the grease.
    Take care,
    Jen
  • morgd
    morgd Member Posts: 3
    #3
    isletcell said:

    Has she had a PET scan?? Theese scans can be helpfull in detecting cancer. I had ultra sounds and ct scans and they missed my tumor.My blood tests were also normal. Finally the 2nd ultra sound and the following ct scan detected it. "human error" I got a PET scan following this and the tumor lit up. I would look into this and get a third opinion; until you feel satisfied that you know what this is. There are doctors out there who can explain things very well and will take the time with you to help you understand. I asked my surgeon for a referal and he was not offended in any way infact he recomended another expert and gave me coppies of my complete chart. When you are dealing with rare cancers the more opinions the better. Just remember that the squeaky wheel gets the grease.
    Take care,
    Jen

    Thanks for the reply. Actually she did have one some time ago and nothing showed up. I'm sorry to say that she just passed away on 03-27-04. We are terribly sad and miss her but she is in a better place. We authorized an autopsy and so hopefully something will show up. Thanks again for your reply. Debbie
  • morgd
    morgd Member Posts: 3
    #4
    morgd said:

    Thanks for the reply. Actually she did have one some time ago and nothing showed up. I'm sorry to say that she just passed away on 03-27-04. We are terribly sad and miss her but she is in a better place. We authorized an autopsy and so hopefully something will show up. Thanks again for your reply. Debbie

    I'm going to close out this discussion and let anyone who reads this know that the autopsy revealed pancreatic cancer. It was very advanced and most likely was very advanced back in October when they said she had cancer. We are thankful she is not suffering any longer.
  • Unknown
    Unknown
    #5
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