Moving from Primary Care to Hospice

playfulplatypus
playfulplatypus Member Posts: 5
edited March 2014 in Uterine/Endometrial Cancer #1
My mother was diagnosed with uterine cancer last week after the results of a biopsy were received. A PET scan was also done. Primary care referred us directly to hospice and has not been willing to give us a referral to an oncologist. Because my mom was in so much pain and not able to keep anything down, we took the referral to hospice just to get some pain management. Should we keep fighting to see an oncologist to see what treatment options are available or just accept that we have been referred to hospice? No treatments have been done at all.

Comments

  • kkstef
    kkstef Member Posts: 688 Member
    #2
    Your Mom
    I am so sorry to hear about your Mom. I would definitely seek another opinion..for your own peace of mind! What type of uterine cancer does she have? What did the PET scan reveal? This all seems so sudden. Has your Mom been suffering long? It seems you have lots of unanswered questions...and some answers would be helpful in the decision making.

    Please keep us posted. My best to you and your Mom!

    Karen
  • nempark
    nempark Member Posts: 681
    #3
    about hospice
    I have never heard of such a thing. I am so sorry to hear of your mom. Yes, you definitely need to see another doctor. I send you and mom lots of comfort and hope you find another doc soon. Please keep us informed. J
  • kanary01
    kanary01 Member Posts: 21
    #4
    nempark said:

    about hospice
    I have never heard of such a thing. I am so sorry to hear of your mom. Yes, you definitely need to see another doctor. I send you and mom lots of comfort and hope you find another doc soon. Please keep us informed. J

    Hospice?
    I am so sorry to hear about your mom. I would get all her records and see another doctor.
    This doesn't sound right they offered you no options at all.
  • jazzy1
    jazzy1 Member Posts: 1,379
    #5
    kanary01 said:

    Hospice?
    I am so sorry to hear about your mom. I would get all her records and see another doctor.
    This doesn't sound right they offered you no options at all.

    Wow
    You should definitely see another doc....oncologist --- as she has cancer, right? I do understand much more on hospice and if she's in pain and unable to get out of the house, hospice is usually called in this instance. Doesn't mean death, but just the area of expertise for her at the moment.

    Some docs just have no bed-side manner and that's okay, but you don't need to depend on one who's not helping you. You and your mom at least should find out status of cancer and make plan from there.

    Best to you....it's difficult just hearing the word "cancer", then not having a competent doc on board, make the journey even more difficult. Hang in there as we're here for you if you have a need for additional support.

    Jan
  • playfulplatypus
    playfulplatypus Member Posts: 5
    #6
    Finally an appointment
    2 1/2 weeks after diagnosis, we finally have an appointment to visit with the oncologist. Hospice has been great with getting my mom's pain under control.
  • nempark
    nempark Member Posts: 681
    #7
    playfulplatypus said:

    Finally an appointment
    2 1/2 weeks after diagnosis, we finally have an appointment to visit with the oncologist. Hospice has been great with getting my mom's pain under control.

    Great news-about mom's app
    So happy you got the app. Please keep us informed and remember that you will get through this. I send both you and mom lots of comfort.
  • nempark
    nempark Member Posts: 681
    #8
    playfulplatypus said:

    Finally an appointment
    2 1/2 weeks after diagnosis, we finally have an appointment to visit with the oncologist. Hospice has been great with getting my mom's pain under control.

    Glad to know about mom's app
    I send you and mom lots of comfort and pray that God gives you both the wisdom and endurance to continue this journey. You will be fine. J.
  • kanary01
    kanary01 Member Posts: 21
    #9
    playfulplatypus said:

    Finally an appointment
    2 1/2 weeks after diagnosis, we finally have an appointment to visit with the oncologist. Hospice has been great with getting my mom's pain under control.

    Appointment finally...Good
    So glad that your mom finally had an appt. make sure you write all your questions down so you are ready. I am glad that hospice is helping with the pain. Sometimes I think that doctors just expect us to know or understand what they are saying even when they are not really saying much. Does that make any sense? My doctor told me I had cancer with about as much warmth as an ice cube...He still does not communicate very well..I have to grab him by the hand to keep him from leaving the room when I have a question. So be ready, I wasn't in the beginning. You and your mom are in my prayers.
    Mary
  • kanary01
    kanary01 Member Posts: 21
    #10
    playfulplatypus said:

    Finally an appointment
    2 1/2 weeks after diagnosis, we finally have an appointment to visit with the oncologist. Hospice has been great with getting my mom's pain under control.

    Appointment finally...Good
    So glad that your mom finally had an appt. make sure you write all your questions down so you are ready. I am glad that hospice is helping with the pain. Sometimes I think that doctors just expect us to know or understand what they are saying even when they are not really saying much. Does that make any sense? My doctor told me I had cancer with about as much warmth as an ice cube...He still does not communicate very well..I have to grab him by the hand to keep him from leaving the room when I have a question. So be ready, I wasn't in the beginning. You and your mom are in my prayers.
    Mary
  • kanary01
    kanary01 Member Posts: 21
    #11
    playfulplatypus said:

    Finally an appointment
    2 1/2 weeks after diagnosis, we finally have an appointment to visit with the oncologist. Hospice has been great with getting my mom's pain under control.

    Appointment finally...Good
    So glad that your mom finally had an appt. make sure you write all your questions down so you are ready. I am glad that hospice is helping with the pain. Sometimes I think that doctors just expect us to know or understand what they are saying even when they are not really saying much. Does that make any sense? My doctor told me I had cancer with about as much warmth as an ice cube...He still does not communicate very well..I have to grab him by the hand to keep him from leaving the room when I have a question. So be ready, I wasn't in the beginning. You and your mom are in my prayers.
    Mary
  • kanary01
    kanary01 Member Posts: 21
    #12
    playfulplatypus said:

    Finally an appointment
    2 1/2 weeks after diagnosis, we finally have an appointment to visit with the oncologist. Hospice has been great with getting my mom's pain under control.

    Appointment finally...Good
    So glad that your mom finally had an appt. make sure you write all your questions down so you are ready. I am glad that hospice is helping with the pain. Sometimes I think that doctors just expect us to know or understand what they are saying even when they are not really saying much. Does that make any sense? My doctor told me I had cancer with about as much warmth as an ice cube...He still does not communicate very well..I have to grab him by the hand to keep him from leaving the room when I have a question. So be ready, I wasn't in the beginning. You and your mom are in my prayers.
    Mary
  • kanary01
    kanary01 Member Posts: 21
    #13
    playfulplatypus said:

    Finally an appointment
    2 1/2 weeks after diagnosis, we finally have an appointment to visit with the oncologist. Hospice has been great with getting my mom's pain under control.

    Appointment finally...Good
    So glad that your mom finally had an appt. make sure you write all your questions down so you are ready. I am glad that hospice is helping with the pain. Sometimes I think that doctors just expect us to know or understand what they are saying even when they are not really saying much. Does that make any sense? My doctor told me I had cancer with about as much warmth as an ice cube...He still does not communicate very well..I have to grab him by the hand to keep him from leaving the room when I have a question. So be ready, I wasn't in the beginning. You and your mom are in my prayers.
    Mary
  • kanary01
    kanary01 Member Posts: 21
    #14
    playfulplatypus said:

    Finally an appointment
    2 1/2 weeks after diagnosis, we finally have an appointment to visit with the oncologist. Hospice has been great with getting my mom's pain under control.

    Appointment finally...Good


    Sorry the web site was nbot working right saw I posted way too many times
  • playfulplatypus
    playfulplatypus Member Posts: 5
    #15
    playfulplatypus said:

    Finally an appointment
    2 1/2 weeks after diagnosis, we finally have an appointment to visit with the oncologist. Hospice has been great with getting my mom's pain under control.

    Wow--they listened
    We went to the appointment today with the OB-GYN. The news is not good. Months to live. The only treatment option offered was palliative care to relieve pain. But, we did get to see both the OB-GYN oncologist and a radiation oncologist in one visit. We do have a treatment plan for radiation. But then they said it will be at least 3 more weeks before any treatment is given. We are searching for a new oncologist.
  • TiggersDoBounce
    TiggersDoBounce Member Posts: 408
    #16
    playfulplatypus said:

    Wow--they listened
    We went to the appointment today with the OB-GYN. The news is not good. Months to live. The only treatment option offered was palliative care to relieve pain. But, we did get to see both the OB-GYN oncologist and a radiation oncologist in one visit. We do have a treatment plan for radiation. But then they said it will be at least 3 more weeks before any treatment is given. We are searching for a new oncologist.

    Playful
    Keeping you and Mom in my prayers.....Please keep us posted on things..

    Laurie
  • playfulplatypus
    playfulplatypus Member Posts: 5
    #17
    playfulplatypus said:

    Wow--they listened
    We went to the appointment today with the OB-GYN. The news is not good. Months to live. The only treatment option offered was palliative care to relieve pain. But, we did get to see both the OB-GYN oncologist and a radiation oncologist in one visit. We do have a treatment plan for radiation. But then they said it will be at least 3 more weeks before any treatment is given. We are searching for a new oncologist.

    Progress slow but steady
    We convinced them to begin treatment on Monday because I was on family sick leave and am running out of time. We are also moving mom to Portland after 10 days of treatment here. I am not sure moving her is good but it is the only way to get more a second opinion and perhaps more treatment.

    I had a little talk with primary care about giving us a referral for a second opinion and primary care said no. They would not give us a referral. I was not a nice daughter and said that we are moving her like it or not primary care.

    Hospice has been good about pain management.

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