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terrible doctors

Donna
Posts: 23
Joined: Dec 2002

My Dad died on 1/24. He had non-small cell. One of the worst things is that we didn't know he was dying now. He didn't know either. He had been told on 12/3/02 by his oncologist and radiation oncologist that he could beat the cancer with radiation and chemo because he was in great physical shape (other than the cancer of course.) Radiation started on 12/16 but chemo never started. My Dad got sicker and sicker each week. He turned yellow and the radiation center took blood tests on 1/14 and determined that he was septic and that his liver enzymes were high. They didn't put him in the hospital though. We took him to the ER on 1/18 and he was admitted to the hospital. His oncologist saw him on 1/20 (hadn't seen him since 12/3) and the first question he asked my Dad was, "Are you taking chemotherapy?" This is the doctor that was supposed to do the chemo! He forgot about my Dad. The last week of his life they ran 7 tests in 4 days on him trying to find out what was wrong with his liver. One of the tests was a colonoscopy (he was already dehydrated and he had to drink a gallon of that junk for the test). All these tests showed nothing and didn't determine that the cancer had spread to his liver. They made him go each day by ambulance over to the radiation place to get treatments because his doctors said he had to have them. My Dad said they told him the radiation treatments were his only chance so he agreed to go even though he couldn't walk or barely hold his head up. He was also in a lot of pain and the ambulance would be late and make he and my Mom have to wait for 2 hrs before they could get him back to his bed so he'd have to wait and wait to get morphine for the pain. It's like these doctors didn't have a clue that he was dying. Each day his kidneys didn't have much output and my Mom kept asking them what was going on and they kept saying they didn't know. I would think doctors could recognize renal failure. The radiation oncologist even had Dad marked to do radiation on 2 new nodules in his lungs that showed on a CT scan the day before he died. The last time I talked to my Dad, he told me he just couldn't understand why he was so weak and that he wished they would figure out that day what was wrong with his liver. He quit breathing that night and was put on a respirator and died 10 hrs later because his body completely shutdown. After he died, we asked to talk to his oncologist and we were told he was out of town. This is the doctor who promised to have us a diagnosis on what was wrong with his liver by 1/23. We got to talk to the liver specialist who told us that his death shouldn't be a surprise to us because he was in the advanced stages of cancer according to the last test they did which biopsied the fluid in his abdominal cavity. (Fluid kept building up on him because his liver and kidneys weren't working as they should.) These test results didn't even come back until the day he died. I told him that my Dad was never told that and neither were we. I told him what his oncologist said in Dec and about how he was doing all the radation treatments. Dad did 25 rads and was scheduled for 10 more but he died before these last 10. This doctor told me that the radiation was just for palliative care. From what I have read, terminal patients don't do 5-7 weeks of radiation, they only do radiation to alleviate pain or shrink a tumor blocking an airway. The liver specialist said he didn't know anything about it because he wasn't an oncologist and had just been called in on my Dad's case 2 days before. None of his doctors called us after he died which shouldn't surprise me I guess. I just can't believe how my Dad was treated. I have decided to write a letter to the hosptial administation and copy all his worthless doctors on it. I now realize that my Dad was apparently in the very last stages of his illness and that he would have died no matter what but it would have been decent of the doctors to tell us this (if they knew) so Dad wouldn't been put through all the treatments and tests. If my Dad had know he was terminal, he would have taken his morphine and went home to die and not bothered with radiation treatments. Any advice from anyone on how to best approach writing a letter to the hospital? I would also like to copy the American Medical Board (is this the right organization who governs doctors?) I know there's no bringing my Dad back but I feel I owe him to at least write this letter. Sorry for the length of this message and thanks for letting me vent. I wish everyone and their families dealing with lung cancer better doctors and care than what my Dad received.

betty2
Posts: 91
Joined: Apr 2002

Donna that is absolutely, the worst thing I have ever heard. Sometimes the hospitals and Dr.'s work together on all those test. I think if you have good Insurance, they will give you test or something until you draw your last breath. When my brother died a couple of yrs ago from colon cancer that was in his lungs and liver before they found it, they kept hanging Gluecose and the morning before he passed about 1:30 in the afternoon they took him for a kidney dialysys( mispelled I know) He was in a coma and right before he passsed they brought another bag of gluecose and a vaporiser, we told them to not do that and they left the vaporiser anyway which was over $1oo.oo
I'm so sorry about your Dad, and it would have been a lot easier on the family and your Dad if
they had told you right away that he was terminal. There is a lot of things worse than dying and that is those stupid test that does nothing but make the Dr's and Hospital more money. I think its The American Medical Association, and I would certainly let them and the Hospital know about all of this. It won't help your Dad but you just never know it might help someone else.
betty2

debjones
Posts: 6
Joined: Feb 2003

Donna, sorry to hear that your father died at such a young age. I can't believe that drs didn't know that he was dying. It sounds like he was showing all the signs. That was really fast. My dad was told on October 12 when he had congestive heart failure and pnuemonia, that they seen a spot on his lung. But they would have to wait until the pneumonia cleared up before they could say for sure if he had cancer. On November 12 he was officially diagnosed with non-small cell lung cancer and that it had already moved to the lymph nodes and liver. He has been with hospice since the first of this year. Since then he has been on oxygen. He has been on pain medication "lobtar" for about 1 month. Up until last Monday, the nurse said she couldn't believe how well he was doing. But that changed really fast, by thursday he started going fast. He has told us that we should just all go home that he needed that time alone. But of course we haven't went home. He told me last night that he was ready to give up. He just wants to go to bed and not wake up. I told him that if that was how he felt, then to pray that God would take him. He told me from the beginning, he didn't want to suffer. So I feel that he is suffering, being so sick and not being able to urinate or have bowel movements. I also told him that I was at peace with him dying, even though I would like for him to be around another 20 years. But I said that I didn't want him around for 20 years if he was going to suffer. He said to me, thanks for telling him that. I felt that he was comforted by knowing that it was ok with me that he go and that I would be alright. He also told me to take good care of myself. That was really hard to do. But God must have given me the strength to tell him that, cause today I am not sure I could tell him.
By the way I was telling him this on the phone, but I am leaving here shortly to spend the night with him (we are all taking turns). Hopefully tonite we can have some special time. Thank you for sharing with me your experience. I have to give you a big HUG for the courage and strength you have in sharing. You must be really strong.
I will keep you posted on what happens. I am so thankful that I found this site and could find such neat people out here.
My prayers are with you for all the days and weeks ahead as you go through this tough griefing process. Take care and God be with you. Deb

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