Bone damage due to radiation,second tumor,end stage cancer

Glowgirl
Glowgirl Member Posts: 16
in Head and Neck Cancer #1

Hello everyone. My sister underwent a partial glossectomy 9 months ago followed by 6 weeks of oral radiation, 4 months ago. None of her doctors believed her when she complained of ongoing,unusual pain and severe swallowing problems 3 months following radiation.Not one x-ray,CT or manual exam was peformed. 4 doctors told her her pain was not out of the norm,following radiation ,and she was told to basically suck it up.I finally found a surgeon who performed a manual exam,did a biopsy and ordered MRI's. The radiation caused severe damage to her cheekbone and left her with exposed nerve endings.Also,a second cancer developed at the base of her tongue,which is too large to be removed. She is now on palliative care and will soon be entering hospice care. I am going to lose my sister. Please,someone,anyone tell me if this has happened to a loved one.

Comments

  • Mom68
    Mom68 Member Posts: 108 Member
    edited August 2017 #2
    I'm so sorry

    Glowgirl, I'm so sorry this has happened to your sister. I don't have any experience with what you all are going through. But I wanted to let you know you and your sister (along with your family) are in my prayers. Warmest Regards...Mary

  • Selway2017
    Selway2017 Member Posts: 2
    edited August 2017 #3
    I'm so sorry.

    I don't have an experience like yours, I am so sorry. Yes, you're right about the loss.  The pain problem is strange and there isn't much that they can do beyond opiates in various forms really.  The second tumor sounds so significant.  At this point palliative care for her, and supportive care for you, is needed.  Please, take care of yourself. 

  • Tonita
    Tonita Member Posts: 197 Member
    #4
    My heart goes out to you and

    My heart goes out to you and your sister. 

  • Mavish
    Mavish Member Posts: 93 Member
    #5
    I am so sorry

    Your sister and family will be in my thoughts and prayers.

  • Mom68
    Mom68 Member Posts: 108 Member
    #6
    One other thing

    I just lost another friend to breast cancer this month (this is the 3rd one...I HATE YOU CANCER!!!) and she was in hospice. My brother saw his fiance through hospice (stomach cancer) and a close neighbor saw her husband through hospice (brain cancer). My brother fought with his hospice staff, and it was a very rough road for him. He eventually worked with hospice and that was when he really started to heal. The other two families worked with hospice immediately, and found great support and guidance through the hospice staff. Many hospice workers feel that it is their calling to work with families during this terrible time. So, I guess my point is, feel free to rely heavily on the hospice staff. They are there to not only help your precious sister, but also to work with you and your family. 

    My thoughts and prayers continue to be with your sister, you and your family....Mary

  • Glowgirl
    Glowgirl Member Posts: 16
    #7
    Mom68 said:

    I'm so sorry

    Glowgirl, I'm so sorry this has happened to your sister. I don't have any experience with what you all are going through. But I wanted to let you know you and your sister (along with your family) are in my prayers. Warmest Regards...Mary

    your reply

    Mary-"Mom68",

                              Thank you so very much for your thoughtfulness and prayers.My sister is a young widow and my sibs live out of town.Of course,they're experiencing this with me but it's not the same as sseing her every day,so this discussion/chat room is a saving grace.Bless you for taking the time to answer me. It means so much. With deep gratitude, Glowgirl{Tina} ps..you share my sister's first name!

     

  • Glowgirl
    Glowgirl Member Posts: 16
    #8
    Selway2017 said:

    I'm so sorry.

    I don't have an experience like yours, I am so sorry. Yes, you're right about the loss.  The pain problem is strange and there isn't much that they can do beyond opiates in various forms really.  The second tumor sounds so significant.  At this point palliative care for her, and supportive care for you, is needed.  Please, take care of yourself. 

    Selway2017--your reply

    Selway2017, Whew,I am a bit overwhelmed by the kindness of strangers. Your thoughtful repsonse is so much appreciated,truely,it is. Thank you so much. My sister is on the strongest fentanyl patch along with liquid oxycodone but it's barely controlling the pain level---and she's not a complainer.I am amazed by her strength , will follow her lead,and certainly pay attention to your advise. Have to stay healthy in order to see her through this. Again,thank you. You helped me and I won't forget it.          Glowgirl 

  • Glowgirl
    Glowgirl Member Posts: 16
    edited August 2017 #9
    Mavish said:

    I am so sorry

    Your sister and family will be in my thoughts and prayers.

    Mavish--your reply

    Thank you so very much, Mavish. I seem to be finding angels everywhere and you're one of them Bless you, Glowgirl

  • Glowgirl
    Glowgirl Member Posts: 16
    #10
    Mom68 said:

    One other thing

    I just lost another friend to breast cancer this month (this is the 3rd one...I HATE YOU CANCER!!!) and she was in hospice. My brother saw his fiance through hospice (stomach cancer) and a close neighbor saw her husband through hospice (brain cancer). My brother fought with his hospice staff, and it was a very rough road for him. He eventually worked with hospice and that was when he really started to heal. The other two families worked with hospice immediately, and found great support and guidance through the hospice staff. Many hospice workers feel that it is their calling to work with families during this terrible time. So, I guess my point is, feel free to rely heavily on the hospice staff. They are there to not only help your precious sister, but also to work with you and your family. 

    My thoughts and prayers continue to be with your sister, you and your family....Mary

    Mom68--a note

    Mary, just read your letter and want you to know I've reached out to hospice before ,when my parents were dying. What a special lot those people are! Angels on earth. Navigating through this storm has been tough going but ,as you pointed out in your response, hospice workers and the extensive care they provide have proven to be invaluable.Once more, let me thank you for answering me. There is comfort in knowing others have been through this and are so willing to help someone they've never met. Thinking of you with special appreciation, Tina

  • RobbT
    RobbT Member Posts: 17 Member
    edited August 2017 #11
    Second opinion

    I feel that there may be clinical trials or special chemo to try. I don't know but a second opinion might be wise. 

  • Glowgirl
    Glowgirl Member Posts: 16
    #12
    RobbT said:

    Second opinion

    I feel that there may be clinical trials or special chemo to try. I don't know but a second opinion might be wise. 

    RobbT--your reply

    Thank you for answering,RobbT. I appreciate your{and everyone's} thoughtfullness. Unfortunately,my sister's physical condition is such that all other options are off the table. My frustration lies in the fact that this could have been nipped in the bud if just one doctor had taken the time to properly examine her, months ago. Again,thank you for taking the time to respond and I hope your day--and life--go well. Bless you, Glowgirl

     

  • Glowgirl
    Glowgirl Member Posts: 16
    edited August 2017 #13
    Tonita said:

    My heart goes out to you and

    My heart goes out to you and your sister. 

    Tonita--your reply

    Thank you so very much,Tonita. May your life be blessed. Glowgirl

  • nikolaf
    nikolaf Member Posts: 50
    #14
    I wish I could provide

    I wish I could provide answers.  i can feel your anger and share it- my husband was misdiagnosed for 8 months.  sSending you love.  

  • Glowgirl
    Glowgirl Member Posts: 16
    #15
    nikolaf said:

    I wish I could provide

    I wish I could provide answers.  i can feel your anger and share it- my husband was misdiagnosed for 8 months.  sSending you love.  

    nikolaf--your reply

    Nilolaf, you are the first person I've spoken with who has experienced the agony of having a loved one misdiagnosed . I am so sorry that you and your husband had to endure this. My hope is that doctors will listen to their patients and stop sending them down the assembly line. I hope you're husband is well, and thank you for your prayers. You have mine too. Glowgirl

     

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