Why don't doctor's give support info?

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tabby
tabby Member Posts: 135
edited June 2014 in Recommend Your Resources

I have been diagnosed with Stage 1 ILC as well as LCIS.  I have had mammo's, ultrasounds, MRI, biopsies, surgery, sentinel node surgery.  If all is well with pathology report this week I will be scheduling bilateral masectomies (yes, I could have opted for lumpectomy, radiation, but NO THANKS).  I have yet to be told where to turn for support even from hospital support groups, etc.  Folks here have been a TREMENDOUS help in giving me the learning curve, but why isn't there someone assigned to you once you receive a cancer diagnosis to help you navigate through this.  There are so many questions, appointments, not to mention the emotional distress and stress placed on the family.  I'm hoping others have had a better experience, but I'm kind of doubting it.  I'd be willing to volunteer once all of this is over to help another "sister" know what's coming next and to be there if she needs help.  Any thoughts or ideas?  Thanks.

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  • crazy4carrots
    crazy4carrots Member Posts: 5,324
    edited April 2009

    Tabby, I think the simple answer to your question is the high cost of health care.  However, I know there are some facilities who employ a "nurse navigator" to help you through all the decision-making that comes with a diagnosis of bc.  At my facility, there was a person in charge of "chemo classes",  a social assistance person, another who arranged for visiting nurses, a patient support group (Willow), and of course the Cancer Society, as well as 3 nurses reporting to my oncologists.

    But I think the time you really need the most help is right after your suspected diagnosis, and I think that's where the nurse navigator would be of the most assistance.  But again, it's several extra salaries for which many facilities just don't have room in their budgets.

    Your offer to volunteer, perhaps at your own facility, would certainly be appreciated!  Why not discuss it with your oncologist, or with the local volunteer organization.

    Linda

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