Is it just me?

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cb123
cb123 Member Posts: 320
edited May 2016 in Stage III Breast Cancer

Hi,

Stage 1 when it started IIIc after double mast. I've anonymized myself better than before and I'm back to the forum in a more comfortable way, in case you recognize anything here as familiar.

I need an opinion outside of the health care provider "system" that I'm in.

Is it just me or do you see something in these office visit summaries? My concern is that SSDI, Insurance providers and other health care professionals will see them. What do you see? First 4 by one person, last one by a different person.

EDIT: Thank you for your input. cb

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  • cb123
    cb123 Member Posts: 320
    edited March 2016

    OK, it must be me. What I see is that all of the summaries written by my surgeon have personal observations, that if seen by others, may reflect negatively on me. The one written by her assistant has no personal observations.

    Things like: noncompliant.

    "She does spend a lot of time talking about options." I thought I was discussing options with my surgeon, apparently I was talking to the wall.

    I wanted to know what I could expect to look like after surgery, not only did they not have pictures but treated me rudely when I came with my own. " She is here with pictures. I let her know that she would be expected to have dog ears."

    "... she does not want any support and although cries about being alone, does not want any additional help." By the time we'd gotten to this point in the conversation my tears had dried. I've been on my own for over 15 years, I don't cry about being alone. I broke into tears when she said 20 nodes were cancerous, I'd been expecting maybe 5.

    I'm just grateful this is almost over and I wont have to deal with this office much longer. With any luck these drains will come out tomorrow and they wont have to see me again.

    Thanks for looking.

    cb

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  • gracie22
    gracie22 Member Posts: 229
    edited April 2016

    If you are worried that these reports will influence your ability to get benefits, don't. That is really reliant on your medical condition, not whatever commentary docs or nurses write. It sounds as if the surgeon wants his/her recommendations for chemo/rads clearly understood ("noncompliant patient") to avoid getting sued for not providing standard treatment. Though that is something you are likely not at all interested in, for their own protection docs have to be clear about the situation. Yes, it would be better if medical people in general would be kinder and more thoughtful with their words when working with patients in a very vulnerable and frightening situation, but that's just how it is, unfortunately. And for oncologists, their work is primarily centered around chemotherapy, and they are sometimes baffled/annoyed by those who decline it (I dislike the word "refuse" in this context; makes the patient sound sort of obnoxious) and that can come through in their notes. There is an old article from Time Magazine, "The Refuseniks" that explains the thought process some people have in declining chemo, link below, that I think would be helpful for docs to read and understand. It's not about breast cancer specifically and is not about declining any particular treatment--more of a take on the how some people weigh these decisions. Even though it sounds from your post as if you will be doing chemo going forward, it may be helpful to you in explaining your history/thoughts to future health care providers, assuming that it resonates with you. Best of luck to you.

    http://content.time.com/time/specials/packages/article/0,28804,2075133_2075127_2075099,00.html

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  • cb123
    cb123 Member Posts: 320
    edited April 2016

    Thank you so much for sharing that article with me. It explains things in a way that I can't and I'll share it with the physicians involved. They have a "team" approach going on and work very closely with my each other. They're all in the same building.

    I met the oncologist today. He did seem upset, I told him that I was remaining open minded this time and had several more tests in mind. He ordered 4 more tests and has referred me for genetic counseling. But the angry facial expressions and the "Dr Gynecology will tell you the same thing" attitude was there when I said I would not be having a preventative hysterectomy and would only have medically necessary surgeries.

    He's a lovely man and if I decide to go with chemo I'll be fortunate to be in his care. I try to be patient with his point of view as I see he is being with mine.

    My mother had chemo, as did my younger sister. My grandfather chose not to. I'll be making an informed decision based on the information available to me, my specific medical condition and family history.

    One of the questions I had for him today was "What is the desired outcome for this chemotherapy plan?" The answer was, "To reduce the risk of recurrence." With my family history, BRCA positive, and aggressive cancer, I thought reducing the risk of recurrence was not worth the chemo because there will be recurrence.

    But there are more tests to be considered. One of them will be to determine if I have bone cancer. There's a suspicious looking something on one of my vertebrae. A positive test for bone cancer would immediately change my mind.

    Thank you again, Gracie. I get a little crass in my speech at times and having this article to share with team will be a big help.

    cb

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  • gracie22
    gracie22 Member Posts: 229
    edited April 2016

    Glad it was helpful; I thought it was well written and respectful. It articulates human reactions to the treatment options offered to people with cancer, and the very personal and unique considerations we make when deciding how to treat this disease. This is very rough terrain to navigate. You are entitled to your reactions and opinions (particularly in light of your family's experiences), and you deserve understanding and respect from your health care team.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2016

    cb: I see from your stats you had surgery 5 months after DX. Was there a reason for waiting or you needed to just decide? I hope you consider doing all treatments available to you including chemo. You have lots to think about but I hope you have a comprtent caring team of docs to advise you.

    Hang in there!



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  • Artista928
    Artista928 Member Posts: 2,753
    edited May 2016

    CB- Are you already on SSDI for breast cancer? If so then not doing the tx that is prescribed may cause you to lose benefits. So it's not just your medical condition but if they think you are doing what your treating dr prescribes and what they say. That's what they really look at when it comes time for cdr (continuing disability review). If you get the long form they will ask for medical records so they will see what is written as well as what you are doing. So while you are doing yourself good in considering your options, SSDI may think you aren't based on what observations they wrote about as well. It's hard to say really. I've seen things get approved that I'm like wow, you got lucky while other times it seems obvious and it gets denied. I don't know when your next cdr is if you even know but if these notes could possibly be seen, I'd go back to those who wrote things negatively and clarify with them what you meant and have the notes ammended.

    Here's the best site for SSDI info and to get questions answered. Helped me a lot. GL!

    http://ssdfacts.com/forum/index.php


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  • cb123
    cb123 Member Posts: 320
    edited May 2016

    Hi,

    OMG! I find myself justifying my actions to people again and I'm not going to do it. I've deleted the explanatory post I was going to leave.

    My financial affairs will have to stay my business and not be discussed in a public forum. Thank you very much for your concern. Please know that I have handled my own finances for over 40 years and think I'll be alright.

    There was a 5 month delay because the gastroenterologists spent 5 months checking me for colon cancer. I have all the records I need to prove it to any SS clerk who questions my compliance. Yes 5 months is a long time to be afraid you're going to die the horrible death that is colon cancer. I'm fairly certain that's where I got my PTSD symptoms from.

    Thank you for asking,

    cb

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  • Artista928
    Artista928 Member Posts: 2,753
    edited May 2016

    Wow cb. I was just sharing with you about SSDI in case you didn't know. Good luck.

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  • cb123
    cb123 Member Posts: 320
    edited May 2016

    Artista,

    I apologize if that seems curt.

    I cannot help but get angry when I think of these doctors. There are so many bad memories and I have yet to forgive them.

    I can easily say, "the gastroenterologist took 5 months" but that was 5 months of daily hell.

    I came to them in pain and guess what they concluded after 2 colonoscopies, 2 referrals, countless blood tests and numerous polyp removals? "Oh, it's probably a hernia. Bye now."

    I've been studying up on SSDI almost as much as I've studied the cancer and spoken with a local attorney.

    Again, I apologize for my tone.

    cb

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  • Artista928
    Artista928 Member Posts: 2,753
    edited May 2016

    No worries cb. I do wish you the best. :)

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