Saw oncologist today ------------ & I'm scared

pinkflutterby
pinkflutterby Member Posts: 615 Member
edited March 2014 in Breast Cancer #1
I saw my onc's partner today, shes out with her baby until the end of December. He said he liked my file that 3 volumes meant I was a success story :))) BUT also said that since they had to remove the port from my head last week he would have to do the treatment directly into my spine - he said it was a very painful procedure :( Im scared!!! I go next wednesday at 11 for the procedure. Ill have it that way at least 2 times before they put yet ANOTHER port in my head to resume the treatments to my head.

Ya'll give me power and strength to get through the next few months -- pleaseeeee :)

HAPPY THANKSGIVING!!!!!!!!!!!!!!!1

♥ Libby
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Comments

  • Scotch Freckles
    Scotch Freckles Member Posts: 273 Member
    #2
    My Heart Goes Out to You
    Oh Libby,

    My heart aches for you. I can't imagin going through what you are enduring. Rest, keep you strength up, good thoughts, and laugh a lot. Don't let the beast or doctor's drag you down. You said your doc was a man, well most men are sissy's about pain and he probably told you the worse instead of what could be. Just remember we all will be there with you if not in body in spirit.

    With All My Best,
    Kathryn
  • seof
    seof Member Posts: 819 Member
    #3
    sorry
    I am sorry you have to go through this. You are in our prayers.

    seof
  • ladyg
    ladyg Member Posts: 1,577
    #4
    I'm sorry
    to hear you have to go through something like that. I will keep you in my thoughts. Try not to let it ruin your Thanksgiving.

    Hugs,
    Georgia
  • carkris
    carkris Member Posts: 4,553 Member
    #5
    ladyg said:

    I'm sorry
    to hear you have to go through something like that. I will keep you in my thoughts. Try not to let it ruin your Thanksgiving.

    Hugs,
    Georgia

    I know very little about
    I know very little about this procedure I beleive it is intra thecal. However it is not right to tell you it is painful without telling you what they will do to make you comfortable during the procedure. I dont think you will have to endure this without help. perhaps you can call the office for further clarification. Libby you are such a doll and have gone through so much. We are always here for you !
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #6
    be thinking of you...
    so sorry...you are going through this....
  • Aortus
    Aortus Member Posts: 967
    #7
    carkris said:

    I know very little about
    I know very little about this procedure I beleive it is intra thecal. However it is not right to tell you it is painful without telling you what they will do to make you comfortable during the procedure. I dont think you will have to endure this without help. perhaps you can call the office for further clarification. Libby you are such a doll and have gone through so much. We are always here for you !

    Like Penny said...
    It really was uncool of the onc to say that the next treatments will be painful. There has to be SOMETHING they can do. I remember Moopy's St. Louis oncologist, standing there with her eyes narrowed like slits, practically hissing "MY chemo patients don't suffer from their treatments." Pleeeeeease hang in there for yourself, Libby, for your family, and for all of us. You are always in our thoughts and prayers.
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #8
    Aw Libby, I'm sure they'll
    Aw Libby, I'm sure they'll give you something for the pain. As another poster mentioned, give them a call to reassure yourself. My heart goes out to you and I hope it goes well.
    hugs
    jan
  • sea60
    sea60 Member Posts: 2,613
    #9
    Yes Libby
    I am praying for you that it will not be painful nor uncomfortable as he says. Know that we have you surrounded in love, positive thoughts and prayer.

    Let us know how it goes...

    Warms hugs,

    Sylvia
  • New Flower
    New Flower Member Posts: 4,294
    #10
    sea60 said:

    Yes Libby
    I am praying for you that it will not be painful nor uncomfortable as he says. Know that we have you surrounded in love, positive thoughts and prayer.

    Let us know how it goes...

    Warms hugs,

    Sylvia

    Libby we will come with you
    Libby we will come with you and hold your hand. You will be Ok, please do not be scared.
    Thinking of you.
    Happy Thanksgiving.
    New Flower
  • RE
    RE Member Posts: 4,591 Member
    #11
    :-(
    Oh Libby phooey on your substitute onco for being so gruff geez! You will be in my prayers and you never know it may not be as bad as the onco said. Hugs to you, please do not fret too much over this although I realize you probably will.

    Hugs to you,

    RE
  • smalldoggroomer
    smalldoggroomer Member Posts: 1,184
    #12
    I am so sorry Libby, I think
    I am so sorry Libby, I think it is wrong that this Dr told you that. I am sure they will give yo something for pain. Try not to worry. I would call and get more information about the procedure. Why did they take the port out if they still needed it? You are in my prayers and thoughts We're with ya darlin every bit of the way. Take care Kay
  • pinkflutterby
    pinkflutterby Member Posts: 615 Member
    #13
    smalldoggroomer said:

    I am so sorry Libby, I think
    I am so sorry Libby, I think it is wrong that this Dr told you that. I am sure they will give yo something for pain. Try not to worry. I would call and get more information about the procedure. Why did they take the port out if they still needed it? You are in my prayers and thoughts We're with ya darlin every bit of the way. Take care Kay

    thank you all for your
    thank you all for your support!!! Im still worried about the pain ecckkk but we gotta do what we gotta do right?!??!?!?!?!?! I'll be keeping in touch and esp let ya'll know how it goes next week!

    They removed the port because it was leaking causing a pocket of liquid pressuring my brain causing seizures weakness dizzyness lots of weirdness.

    They want to put another type of port in my head in a couple of months!
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #14
    pinkflutterby said:

    thank you all for your
    thank you all for your support!!! Im still worried about the pain ecckkk but we gotta do what we gotta do right?!??!?!?!?!?! I'll be keeping in touch and esp let ya'll know how it goes next week!

    They removed the port because it was leaking causing a pocket of liquid pressuring my brain causing seizures weakness dizzyness lots of weirdness.

    They want to put another type of port in my head in a couple of months!

    pinkflutterby .. Strength and Courage - I pray
    for you and your family. Let us know how you are doing .. Difficult decision, hoping some peace is in your life and a great strong support system is there with you daily.



    Vicki Sam
  • thanksbetoGod
    thanksbetoGod Member Posts: 4
    #15
    Oncologist
    Libby, please call your oncologist's office, there is usually someone there to answer 24/7. Tell them what was said to you and ask for a call back ASAP from a different doctor to discuss your fears. This doctor does not sound like someone who knows how to treat the whole patient and you deserve better. I'm praying for peace and a good outcome for you. Beverly
  • fauxma
    fauxma Member Posts: 3,577 Member
    #16
    thanksbetoGod said:

    Oncologist
    Libby, please call your oncologist's office, there is usually someone there to answer 24/7. Tell them what was said to you and ask for a call back ASAP from a different doctor to discuss your fears. This doctor does not sound like someone who knows how to treat the whole patient and you deserve better. I'm praying for peace and a good outcome for you. Beverly

    I think that it is very
    I think that it is very unfortunate that this onc presented this to you by only saying it is a very painful procedure. While none of us want to go into a treatment not forewarned we also don't need to be scared out of our wits. I went to a site that had some information about spinal chemo and I copied this section for you.
    An intralumbar injection is when your caregiver gives your chemotherapy into your spine. It is also called a lumbar injection. Your caregiver will place a needle with the medicine into your spine. Once the chemotherapy is given, the needle is removed. An intralumbar injection may be painful. Your caregiver may use special medicine to make you lose feeling in the area or to make you drowsy before the medicine is given. Ask your caregiver for more information about intralumbar injections.
    It seems to me that the onc could and should have mentioned the possibility of using either of these. Would certainly have eased you mind? And since these can be given I would definitely request something. Twilight sleep, a spinal block, something. I think that there are just some caregivers that forget they are dealing with real life people and they have feelings, fears, and need some compassion when being told about treatments.
    Like the others said, call and talk with someone about what will be done to make this as comfortable as possible.
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #17
    fauxma said:

    I think that it is very
    I think that it is very unfortunate that this onc presented this to you by only saying it is a very painful procedure. While none of us want to go into a treatment not forewarned we also don't need to be scared out of our wits. I went to a site that had some information about spinal chemo and I copied this section for you.
    An intralumbar injection is when your caregiver gives your chemotherapy into your spine. It is also called a lumbar injection. Your caregiver will place a needle with the medicine into your spine. Once the chemotherapy is given, the needle is removed. An intralumbar injection may be painful. Your caregiver may use special medicine to make you lose feeling in the area or to make you drowsy before the medicine is given. Ask your caregiver for more information about intralumbar injections.
    It seems to me that the onc could and should have mentioned the possibility of using either of these. Would certainly have eased you mind? And since these can be given I would definitely request something. Twilight sleep, a spinal block, something. I think that there are just some caregivers that forget they are dealing with real life people and they have feelings, fears, and need some compassion when being told about treatments.
    Like the others said, call and talk with someone about what will be done to make this as comfortable as possible.

    Yikes!
    Libby- So sorry to hear this news. I'd be scared out of my wits being told something would be "very painful". I hope you'll ask a lot of questions and get some reassuring answers before next week. I'll be sending positive thoughts your way on Dec. 1 regardless. We all have different levels of pain tolerance - it's not a one fits all situation.

    Best,
    Suzanne
  • Annette 11
    Annette 11 Member Posts: 380
    #18
    Libby
    I am so sorry you have to endure this but I am so sure they will have to give you something for the pain. Can you call the hospital or where ever you are getting this treatment and talk to a nurse. Tell them what the dr. said about the pain and you are scared. They may put your mind at ease and just talking about it with the nurse who is knowledgable of the procedure will make you feel better. This is what I would do for sure. I did just that about my port before I went in for surgery because the idea of that going into my skinny chest was scary.
    Keeping you in my thoughts and prayers Libby.
    Hugs.
    Annette
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
    #19
    Libby, you are one strong
    Libby, you are one strong warrior!! As requested, I am sending strength and the power to get through this ordeal. In today's world I cannot imagine that a procedure is performed that is "very painful" WITHOUT any pain drugs. Like someone else said, we all have a different tolerence for pain and a lot of men don't handle pain well. I'm sending you hugs and the knowledge that we will be with you ALL THE WAY!! Let us know what we can do for you and also know that we will be with you even it is just in spirit. Take care of yourself!!
  • Megan M
    Megan M Member Posts: 3,000
    #20
    VickiSam said:

    pinkflutterby .. Strength and Courage - I pray
    for you and your family. Let us know how you are doing .. Difficult decision, hoping some peace is in your life and a great strong support system is there with you daily.



    Vicki Sam

    Sending you strength and
    Sending you strength and lots of prayers pinkflutterby!


    Hugs, Megan
  • lynn1950
    lynn1950 Member Posts: 2,570
    #21
    Your own power and strength
    Your own power and strength is so impressive. I'm standing with you now and Wednesday, sending prayers and love. It was good to read the others posts that you can be given something to make you more comfortable. And boo on the onc doc for telling you about the pain without giving you any reassurance. Keep fighting! xoxoxo Lynn

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