Frustrated with lack of information/communication from Emory doctors

SKFM
SKFM Member Posts: 1
in Caregivers #1

My family member is receiving treatment at Emory Winship Cancer institute, chemo and radiation, for head and neck cancer.  Everyone involved in his care feels like we have to beg and plead with his doctors to give us basic information.  We are constantly guessing about things, having to call, text and email to try to get answers.  They seem to think we are crazy.  He will soon be completing his court of chemo/rad and now we're asking about how they assess how/if the treatment has affected his tumor.  They tell us they'll do a PET scan in a year?!

Is this normal treatment from cancer docs, or are the people at Emory just especially bad at communicating?

Comments

  • ClaCla
    ClaCla Member Posts: 136 Member
    #2
    Post this on the Head/Neck Cancer Forum As Well

    My doctors have been very open and communicative with me (the patient).  It may be that they don't have answers for you, but I would think they would at least tell you that.  I hope you'll post your inquiry on the Head/Neck Cancer discussion group on this site as well.  Since that group is more knowledgeable about his type of cancer, they would be better able to help you.  The best I can suggest is that you be kind and respectful with his doctors, but also assertive.  Tell them what you told us.  They are most likely doing the best possible and want to give your relative the best possible care and service.  However, I stay on top of every detail of my treatment.  Make sure your relative has been getting copies of the report for any scans that have been done, and that he or a family member or friend reads it in detail and questions everything on the report.  I have excellent doctors, but have found that I've needed to point out when I think I might have a specific side effect of treatment.  It sounds odd to me that they won't be doing a PET scan for a whole year.  Will they be doing some other type of scan sooner?  For the type of cancer I had, I get a CT scan every four months and a PET scan once or twice a year.  But mine was lung cancer, so protocol may be totally different.  Once I've been cancer-free for a couple of years, the scans will become less frequent.  God bless and best success.

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #3
    Emory

    My husband was referred to Emory after his first round of treatment failed.  We had a great ENT who is no longer there and never had a problem with communication.   Unless your family member has given the doctors permission to talk with you, they can't and won't due to the laws.  Even though my husband lost his battle I have only good things to say about Emory and especially the doctor who was in charge of his care.  Now I didn't care for the oncologist. He had no bedside manner and even told us that since the lung cancer wasn't causing any problems at that time no treatment was needed.  The lung cancer was part of a secondary cancer.  By that time my husband had already said no more he had had enough and we had been told that chemo would only buy time but could hasten it also.  Our ENT specialist at Emory always took a great deal of time with us and answered any and all questions we had.  When my husband decided no further treatment I remember the doctor telling me that if I needed anything at any time to call him. 

    I did find thru our journey that no two doctors are alike and that everyone has their opinions but I can honestly say our specialist was great and was sorry to hear that he left Atlanta. 

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