update on Doctors told us to decide, Quality or Quanity

stretch7425
stretch7425 Member Posts: 13
edited March 2014 in Caregivers #1
Original post on 11/27
More detail information on my blog same subject
Wife with Stage 4 NSCLC diag 04/01/2010 now DNR and will be going home on Hospice.

Need everyones opions
I'm starting to think I may have picked the wroung Cancer Clinic for her care.

Her cancer was advanced when detected, required emergency brain suregery due to pressure on brain stem. Then from what I understand the standard agresive treatment of radiation and chemo. Now told she only had a 2 to 8 month life expectance. Told this on 12/1/2010

We never asked about life expectancy and maybe should have.
At one point in her treatment them made a big deal of the fact that she was responding to treatment and even called her a miricale paitent.
Then 6 weeks after treatment had a PET Scan and told great news tumor in chest has shrung and there is no active cancer.

Cancer clinic will not return phone calls, and a IN Hospital Oncologist has been asigned, He said he does not have an answer to why they said what they did. His boss is the one who said no active cancer. This clinic is part of this hospitial and is a University Hospital and Cancer/research center.

So what do you think, did I go with the wroung clinic or was this going to be the outcome no mater what?
I know that they did some things that were wroung as far as telling us what they did but I doubt if it broke and law and I do not have time to waste on anger. Once everything is over and I have done my healing if I still feel this way I will look into what can be done to keep this from hapening to someone else.

Anyway what do you think
Rick

Comments

  • Barbara53
    Barbara53 Member Posts: 652
    #2
    how it works
    Rick, so sorry to hear of your last few nightmare months. I hope that with hospice help, your coming days will be much more peaceful.

    My experience has been that oncologists choose their words very very carefully. Then, when you take apart the conversation in hindsight, you can find all sorts of double meanings. For example, “All in all, the CT scan looked pretty good.” All in tall takes in a lot, and pretty good is only one word away from pretty bad. By the end of this conversation we learned that mom had new mets on her chest wall, but the careful words won mom over, and she told all her friends about her “great report.”

    I don’t regret NOT asking hard questions in front of mom, and like your wife, mom chose not to ask about outcomes or survival times. I doubt that there were serious mistakes made in your wife’s care, because late stage cancer of any type is very difficult to treat without killing the patient in the process.

    Last year, when my mother was told she had no active cancer, she understood it to mean that all cancer was gone from her body. I never challenged her on it, because it gave her peace of mind. If your wife got similar benefits, at least for a while, maybe it was a good thing after all.
  • mswijiknyc
    mswijiknyc Member Posts: 421
    #3
    prayers hugs and happy thoughts
    This is a hard thing and there most likely not be anything that I would be able to say that could help you with all the emotions right now.

    If you feel, and your wife feels, that you need to get a second opinion, by all means get one. Be her advocate and be the hard **** that you sometimes need to be. I watch my husband be all "I'm gonna tell them this that and the other!" and when we get to his appointment he looks to me to be the bad guy. Find out how she would like to approach this and advocate HARD for it.

    Your situation sounds grim but allow me to say this - here in New York we have a hospital called Calverton. This is a pallative hospital, as my husband puts it where people go to die. By a fellow laryngectomy I was told of a woman who was checked into Calverton because she only had 6 months or so left. 3 years later SHE CHECKED HERSELF OUT. Never give up hope.

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