OK, how do I handle this?

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bride
bride Member Posts: 382
OK, how do I handle this?

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  • bride
    bride Member Posts: 382
    edited September 2015

    Hi my BCO sisters,

    I've been NED since July 2014. I got a new MO in July of this year -- my old one went into a research job. My new MO has been tracking a tiny spot on my spine, so far no real worries, it's all of 1mm big. In early Sept. I saw my RO for my one year follow up. I have to say that my RO is incredibly patient-oriented and nothing slips by her. She said I was doing very well. But she also contacted my MO and suddenly I was getting scheduling for CTs, MRIs, blood work, etc.

    My CT scan was for my chest -- I had it today. When I emailed my MO to ask why a chest CT, her nurse forwarded me my doctor's comments and orders. Seems I have a lung nodule that, oops, my MO forgot to tell me about.

    So two questions. How concerned should I be about this nodule? It's a bit less than 5mm in size and was referred to as "non-specific."

    The second question is how to deal with my MO. She's a newly minted MO, very smart, and quite likable. But between my mother hen RO's jumping on her -- all my new tests were ordered one day after I saw my RO, and my rather pointed email entitled "What Lung Nodule?" My MO, who had previously said she'd rather be my friend than my doctor, is now taking such a defensive stance that it appears she sees me as an adversary. I don't want or need this: I have some rather complex post-treatment issues that mostly resulted from my allergy to Taxotere, my main chemo agent. I need a MO who is willing and able to help me coordinate my various ongoing treatments. I certainly didn't know my RO was going to contact my MO and I feel my anger at not being told about the lung nodule was justified. However, I want to restore my earlier, friendly relationship with my MO. Any ideas on how to accomplish this?

    Thanks,

    bride

  • Meadow
    Meadow Member Posts: 2,007
    edited September 2015

    Sweet bride, first, I wouldnt worry about the node yet. Not enough info to warrant worry, and worry drains us of our energy.

    Second question, My first reaction is, I couldnt care less about being her friend, I want a great doc. But I am trying to see all sides of this, and I know we get more out of our patient/doctor relationships when there isn't any tension. So...if she truly sees you as an ADVERSARY, that is unacceptable totally and 100 percent. Your trust has been breeched, can it be restored? I am curious what others say. I am sure I have been no help at all.


  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited September 2015

    Just a suggestion, that could be off the mark. Perhaps, right now, you should concentrate all your energy on your new diagnosing tests and let the RO and MO work out their differences. Once you know what you have to deal with, if anything, then see if there are any remaining personality differences. Who knows, maybe a little tension in the relationships will result in a better outcome for you.

    I have pet/ct scans every 6 months and have just had a lesion show up at T7. Interestingly enough, I have no idea how big it is, I just know what the metabolic uptake is, 3.2. I believe that might be rather small, but it is enough to treat it, which will be with Xeloda. I've had a number of lesions at different places in my spine and hips, but never knew the size of any of them. Could be the difference in diagnostic tests? Don't know.


  • tinaQualls
    tinaQualls Member Posts: 8
    edited September 2015

    I agree with winningsofar I would let them work out their differences and let you concentrate on getting well. The size does not matter what does matter is if the treatments working or not. Blessings

  • ibcmets
    ibcmets Member Posts: 4,286
    edited October 2015

    Bride,

    I had so much going on when I was diagnosed that my Onc did not mention things on my scans but did verify thoroughly with tests. He would tell me if we had anything to be concerned about and did not want to overwhelm me. Check but verify is always good. No need to worry unless you have something to worry about. Some issues with my lungs were scar tissue from radiating a lymph node.

    Hang in there.

    Terri

  • Meadow
    Meadow Member Posts: 2,007
    edited October 2015

    Yes Bride...me too

  • bride
    bride Member Posts: 382
    edited October 2015

    my dear friends,

    I'm back. It's a weird tale. I didn't fuss at my MO, my RO did. Then my MO's RNs screwed up badly. Among other things, one met me in the waiting room shared by 7-8 MOs and told me that I could only contact my MO by using Word (a program I don't have) and using bullets. After bawling me out, she ordered me to have a second round of pre-op bloods and, contrary to my MOs orders, have the port removed the next day. Although I had the same blood work done 6 days earlier, she insisted I repeat it. Since she claimed to be speaking for my MO, I did the damn blood work and had the port out. I'm overly sensitive to versed and slept for three days. Then I had my spinal MRI, with and without contrast. I have tiny veins that roll at the first smell of a needle. The blood work had left my elbow bruised and the port removal had wiped out my inner wrist vein -- my hand veins aren't usable because I've got an artificial wrist. So they pumped the contrast into my wrist vein. And, since nothing can go right, I developed a clot in my arm and was hospitalized. I was on a ward with tons of electronic gear and so couldn't log on. Got home this morning

    Now comes the really weird stuff. My original CT and MRI were done at one of Emory's satellites. I insisted that this round of scans be done at Emory. And, sheesh, the results contradicted the earlier tests. The "blood" on my spine turns out to be a normal variant of the conjunction of several tiny veins. The lung nodule wasn't present on this CT and when the Emory radiologist compared the two scans she told me the first scan only showed some thickening due to the UM scar. Waiting for me at home was a very gentle email from my MO which repeated every the other docs had already told me. And she signed with her first name only. I'm taking that as an apology—for now.

    Sleep beckons with its siren song, so I'll stop for now.

    I love each of you for your support and concern. More later…

    bride

  • Noor46
    Noor46 Member Posts: 68
    edited October 2015

    hi Bride, fantastic news, but I'm very sorry for all the other things that went wrong and made you so worried.

    Hold on to the NED!

    Noor

  • rosiesgirl
    rosiesgirl Member Posts: 89
    edited October 2015

    Great news Bride! Get some well deserved rest!

    Joy


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