• Further diagnosis/treatment

    Asked by cand2012 on Thursday, February 21, 2013

    Further diagnosis/treatment

    This will probably seem like a harsh question, but we don't seem to have good communication with the doctors and I am in another state and am not getting clear information from family members who are there.
    My dad was treated for lung cancer a year ago and that seems to have gone well. Followup scans were clear until the most recent which showed a small spot on the adrenal gland. They are going to biopsy and treat with radiation if it is a metastasis.
    My dad also has an autoimmune process triggered by the original tumor, LEMS. He can barely walk, has no energy, barely eats, in increasing dependent on others and doesn't want to live this way. There isn't really any prospect of this being reversed. He has said he does not want extraordinary measures taken.
    Question: Why are they doing a biopsy and radiation in this setting? Is this a quality of life issue? The trips for radiation will completely exhaust him.
    I am just trying to understand this.

    7 Answers from the Community

    7 answers
    • Clyde's Avatar

      The only way you can fully understand what is happening is if you travel to your father and attend an appointment with him. Then you can see who is making the decisions and why.

      over 7 years ago
    • SueRae1's Avatar

      I totally agree with Clyd. your dad should be able to decide how to spend what time he has left. does he have a living will which details his wishes also who has his. health care proxy make sure that both of the above documents are in order and have copies or the originals. a hospital social worker can help with this or you can opt for. a lawyer

      over 7 years ago
    • nancyjac's Avatar

      Any and all treatment is your father's decision to make. So I would assume he has made the decision to go forward with the biopsy and radiation if the biopsy shows it to be malignant. "Extraordinary measures" as described in a DNR are typically limited to instruction to not resuscitate if he stops breathing. Legally, his doctors cannot give you any information unless your Dad has specifically requested that infromation be provided to you.

      over 7 years ago
    • carm's Avatar

      I have many patients all over the U. S. and abroad, and at times they want me to be a part of their office visits so they put me on speakerphone during their appointment. Perhaps you might try that or asking your Dad's case manager if you can set up a phone conference with his oncologist to find out the rationale behind these procedures. Of course you must make sure that the doctor knows that your Dad gives consent for you to know the specifics of his case, otherwise the doc will see it as a violation of his privacy. Best of luck to you, Carm RN.

      over 7 years ago
    • cand2012's Avatar

      Thanks for the responses. (I see your names on many other posts; thanks for all the support you provide.) This gives me some direction to go. There isn't a case manager for him; he is losing cognitive ability (prophylactic brain radiation, aging) so I don't think he understands the ramifications of different courses of action. And my mom is overwhelmed. But of course they want to do most of the communication and decision making. I think it's a combination of family dynamics, lack of advocating, and a very poor VA system. (Which I hate to say because we had excellent care through the military for years.) His specialists seem very competent, but there is no cohesive system.
      I will be out there in a few weeks, and will try the angles you suggested to communicate with him and his doctors. Thanks, I just really needed to hear some ideas!

      over 7 years ago
    • LuvinSis' Avatar

      I typed up a basic release form, for my aging parents who were in agreement and lived in another state, that stated all providers were authorized to share all medical and related information with me and I was authorized to speak direct to providers. This wasn't cancer related, but for other medical conditions. In doing so I made sure my mom received a supplemental procedure (manipulation under anesthesia) when she had limited range of motion post shoulder replacement. PT had stopped any activity when she said "ouch". I had a conversation with the surgeon and I actually requested the procedure (with my mom in full agreement). They kept telling me she was elderly and didn't need the procedure. This was 15 yr ago when she was 62. She is still in two golf leagues and a bowling league. You can likely find good examples of medical release forms online.

      over 7 years ago
    • cand2012's Avatar

      Thanks for the info on the release of information, I need to get that in place (assuming my dad agrees).

      over 7 years ago

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