Primary Caseworker?

rizzo15 Member Posts: 153 Member
edited March 2014 in Breast Cancer #1
Since I was diagnosed in early Nov 2002 (IIIa), it seems like my 3 doctors (chemo therapy oncologist, surgeon, radiation oncologist) have not told me much about the progression of my treatment. Could anybody tell me if this is because they are deciding what to do on a case-by-case basis, according to my response to each little piece? Or is it because I'm supposed to be my own caseworker-advocate? I mentioned this the other day to my radiation oncologist. She seemed genuinely surprised to have an exam appointment with me even though she had told me to set the appointment immediately after mastectomy. She told me my next step was to return to my chemo therapy oncologist and I wasn't to see her for at least 6-8 weeks, she was saying that my regular family practice physician really has little or no involvement with what's going on at this point, I was really surprised. Both my healthcare plans insist that I obtain referrals from my family practice doctor before seeing any of my 3 specialists. So far, I just have been casting about looking for the next thing they will do to me after it appears a particular course of treatment seems to be coming to a close. Is this everyone else's experience? Or has somebody been "leading you by the hand" at least a little so you will know what to expect next? I know there's not a lot of planning you can do with your life in any case (even when not ill), but I like to be a little mentally prepared for what will happen next. I find that I can face anything pretty calmly if I have at least a little forewarning.


  • geral
    geral Member Posts: 130

    It's very important to have one doctor who assumes and coordinates workup and care related to it. Your primary doctor could help coordinate your care.

    If your primary doctor is not your answer, your hospital should have a Breast Cancer Coordinator who could do this for you or arrange for a doctor to do so.

    One of the worst aspects of having cancer is that it's out of our control. I, like you, deal with things much better if I am told what to expect.

    Good luck in finding a coordinator. Stay on top of this until you do.

    Take care,
  • sandytrif525
    sandytrif525 Member Posts: 106
    Dear Rizzo, Doctors don't like to give you a prognosis. If they are wrong, you get angry if they are right and you live, you wonder about them. My doc, the oncologist, says people who have had this type of treatment do better than those who have had this other treatment. My surgeon gave me a 75% chance. My radioligist did not say much. Most of my care was outlined by the surgeon, but then my oncologist really planned out everything for me, which ended up longer than what the surgeon said. Some said my onco was chemo happy but you have to trust who you are going to. Hope this offers some help. God bless. Sandy
  • isaiah4031
    isaiah4031 Member Posts: 240
    I belong to an HMO which has been very good at education and support, but it does seem that the doctors don't communicate well with one another. They seem to rely on me to tell them what is going on. I think we need to be our own advocates. AFter all, we do have our own best interests at heart. Hang in there and keep us posted.
    Love, Jayne
  • pijunsis
    pijunsis Member Posts: 3
    In my case also, my primary dr.(GP) is not involved. I am advised primarily by my surgeon and oncologist. If you have quesitons that you feel your doctor has not satisfied or if you are in a position where you don't know what to do I have found it helpful to speak with an oncology nurse. One very good reason for your GP not to be involved is that while you are on chemo with a compromised immune system it would not be wise to sit in a GP's office, where you may be exposed to
    various illnesses. Good luck. Grace