Metastatic breast cancer

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rhatch
rhatch Member Posts: 2
edited March 2014 in Breast Cancer #1
I wrote to this CSN group in March seeking some answers to my problem. Pains began in January as intermittent and progressed to severe and chronic by May. I felt as if my doctors were not taking me seriosly since the recent mammogram was clear. After several medications and visits to a neurologist my oncologist ordered a new bone scan. It showed the cancer had spread to the sternum. I have advanced metastatic breast cancer. I am scared. I am also disheartened because it took so long for the doctors to take aggressive action. They minimized my concerns. I am now in a new round of radiation. Please follow your instincts. You may sound like a hypochondriac but you may buy yourself more time and options.

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  • 24242
    24242 Member Posts: 1,398
    #2
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    My thoughts and prayers are with you. There are so many who feel that they are bothering busy doctors. That for some reason we are to suffer with pain. Thanks for encouraging us all to stay on top of all we are feeling. If one is in pain our bodies are trying to tell us something. I am concerned for those being treated with anti depressants because pain causes depression not the other way around. PAIN NEEDS ADDRESSING. Any time you would like to talk send me an email and I would love to hook up for a chat. I get my messages every other day.
    Be good to yourself and realize you too have options. There may other things out there that may help you to increase the quality of your life. Don't stop looking.
    24242Tara
  • imdebra
    imdebra Member Posts: 20
    #3
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    i am thinking of you and sending good thoughts and wishes your way. good luck to you and thank you for taking the time to write such an important message to all of us.
    debbie
  • relayqueen
    relayqueen Member Posts: 6
    #4
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    Thank you for writing - I hope that others will heed your advice. I joined this CSN to find support for my mother who has advanced metastatic breast cancer as well. They first told her it was arthritis, then they said a compression of the spine and a pulled muscle. At the time she was a two time breast cancer survivor. Not once did they check to see if the cancer had returned this time. It wasn't until we persisted with her family doctor and involved the surgeon that we all love so well did we get some answers. The bone scan revealed much cancer throughout her skeleton. She is now on Taxol. Her treatments are every three weeks for the rest of her life. You are so wise to encourage all of us to listen to our bodies and seek treatment.
  • mommy2twinz1
    mommy2twinz1 Member Posts: 38
    #5
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    I am sos orry to hear this. You will be in my prayers. Please keep us informed.
    Tracy
  • owly
    owly Member Posts: 10
    #6
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    Thanks for posting this. I
    Thanks for posting this. I had a very similar experience. I am 36 and went through breast cancer treatment at 32. I was told I was in remission for 4 years, but had terrible hip pain. For one year I was misdiagnosed and now have found out that I have metastatic breast cancer in both my hip bone AND my liver.
    Now, I am having taxol once a week and still trying to work and date and live a "normal" life, but WHY couldn't they have just listened to me?
    It's worth getting a second opinion.
  • Balentine
    Balentine Member Posts: 393
    #7
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    owly said:

    Thanks for posting this. I
    Thanks for posting this. I had a very similar experience. I am 36 and went through breast cancer treatment at 32. I was told I was in remission for 4 years, but had terrible hip pain. For one year I was misdiagnosed and now have found out that I have metastatic breast cancer in both my hip bone AND my liver.
    Now, I am having taxol once a week and still trying to work and date and live a "normal" life, but WHY couldn't they have just listened to me?
    It's worth getting a second opinion.

    So sorry to hear this
    Many others have said the same thing happened to them. Especially for us in our 50's and 60's we may think it is just arthritis so how do you really know? How bad is the pain and is it constant? Is the pain worse than arthritis pain? I have pain in my hip also but it is bearable so I am thinking it is just old age or arthritis. How do you know when to ask for the bone scan? I am praying for you that all goes well with the taxol treatments. God Bless!
    Lorrie
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    #8
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    owly said:

    Thanks for posting this. I
    Thanks for posting this. I had a very similar experience. I am 36 and went through breast cancer treatment at 32. I was told I was in remission for 4 years, but had terrible hip pain. For one year I was misdiagnosed and now have found out that I have metastatic breast cancer in both my hip bone AND my liver.
    Now, I am having taxol once a week and still trying to work and date and live a "normal" life, but WHY couldn't they have just listened to me?
    It's worth getting a second opinion.

    So sorry owly. Sending you
    So sorry owly. Sending you prayers!
  • bjmom1
    bjmom1 Member Posts: 152
    #9
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    Balentine said:

    So sorry to hear this
    Many others have said the same thing happened to them. Especially for us in our 50's and 60's we may think it is just arthritis so how do you really know? How bad is the pain and is it constant? Is the pain worse than arthritis pain? I have pain in my hip also but it is bearable so I am thinking it is just old age or arthritis. How do you know when to ask for the bone scan? I am praying for you that all goes well with the taxol treatments. God Bless!
    Lorrie

    The sign for me
    The sign I had was a constance pain that would not stop. My bones hurt so bad that I could hardly walk somedays. I kept going to various doctor and telling them about my pain until someone listen and my radiogist ask for a xray and found my bone mets. If you have an pain that do not stop with pain med then it time find out what is wrong.
  • m_azingrace
    m_azingrace Member Posts: 399
    #10
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    survivorbc09 said:

    So sorry owly. Sending you
    So sorry owly. Sending you prayers!

    I am also very sorry this has happened to you.
    At the same time, I am very fortunate, because my doctor does listen to me, and takes me seriously when I express a concern about something I consider "abnormal". I have metastic breast cancer. One of the tumors is in my upper left arm. Lately I have had some odd discomfort that comes and goes, but does not completely go away. My onc has ordered an MRI of the area. He said he it would be better to find out it's nothing, than to ignore it, and have it be something. I'm praying for you. Gracie.
  • smalldoggroomer
    smalldoggroomer Member Posts: 1,184
    #11
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    I am so sorry
    I cant think of anything worse then your Doc not listing to you and trusting in what you are telling them. I am so glad to have my Doc, My first complaint and he was all over it fast. I wish you all the best my prayers are with you. Please keep us posted. We are all here for you. {{{ BIG HUGS }}}}
  • Wolfi
    Wolfi Member Posts: 425
    #12
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    I'm sorry
    That sucks! I am angry to hear that your cancer has spread and equally angry that I have been having pain in my chest for months that cannot be explained. I am on three different medciations to deal with the pain and yet none of my doctors can tell me why I have the pain in the first place. When you said cancer has spread to the sternum it scared me because that's where my pain seems to originate. I'll contact my surgeon and see what he thinks (I've asked all of my other doctors).

    Good luck with your radiation and thanks for the post.

    Wolfi
  • ms.sunshine
    ms.sunshine Member Posts: 707 Member
    #13
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    Wolfi said:

    I'm sorry
    That sucks! I am angry to hear that your cancer has spread and equally angry that I have been having pain in my chest for months that cannot be explained. I am on three different medciations to deal with the pain and yet none of my doctors can tell me why I have the pain in the first place. When you said cancer has spread to the sternum it scared me because that's where my pain seems to originate. I'll contact my surgeon and see what he thinks (I've asked all of my other doctors).

    Good luck with your radiation and thanks for the post.

    Wolfi

    I have a question. If one
    I have a question. If one has bone cancer will it show up on a pet scan or is there a specfic test that has to be done just for the bones?
  • Jan_M
    Jan_M Member Posts: 116
    #14
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    ms.sunshine said:

    I have a question. If one
    I have a question. If one has bone cancer will it show up on a pet scan or is there a specfic test that has to be done just for the bones?

    Bone scan
    A bone scan is reguired to find it in the bones and a PET scan does the soft tissue.
  • Jan_M
    Jan_M Member Posts: 116
    #15
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    My family Dr. did not take me serious.
    I went to my family Dr. to tell him I had pain in my pelvis on the left side in May, he said it was tendenitis. I asked him about a lump on my right thigh and asked if it could be cancer and he cluckled and said no. Six weeks later I went for my six month check up with the breast surgeon snd he said that it was not tendinitis and to see my cancer dr. right away. It ended up I had a broken pelvis broken in two places by a tumor and the lump on my right thigh was breast cancer. After a bone scan and pet scan I had mets with several tumors thoughout my body. Finally I was taken seriously. I felt like my family dr. thought I just wanted pain pills. If he had taken me seriously I would not have been in pain for so long. Now I got radiation therapy, chemo, surgery and a port. I feel like I am going in reverse with my cancer.
  • cahjah75
    cahjah75 Member Posts: 2,631
    #16
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    I'm sorry
    that your dr didn't listen to you and grateful for your message to all of us. I have degenerative disc disease and feel arthritic pain all the time. I was dx w/bc in May 2010, had bilateral mastectomy June 2010 and started chemo in Aug. My oncologist scheduled me for a PET scan on Monday. I'm wondering will I feel good about things if the PET is clear or will I still wonder if I should have a bone scan????
    Char
  • SusieVerb
    SusieVerb Member Posts: 1
    #17
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    Metastatic BC

    Even if they catch it a month or even a year earlier- once it has metastasized, there is no cure.  I was diagnosed with stage 4 in 2015.  I never thought my cancer was going to come back.  Even my positve thinking could not keep it away.   I'm always tired...with or without treatment.  I'm waiting now to see if I qualify for a new chemo pill.  I don't know the name of it yet.  I have a PET scan on Thursday...and I'm not supposed to get goosebumps the day before and day of the scan.  It's so cold outside how do I do that??

  • Karinmichelle6
    Karinmichelle6 Member Posts: 2
    #18
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    Hi All,

    I am brand new to the board and have MBC: bone, liver & small intestine. I deal with pain by taking ascorbic acid plus using a heating pad. This has worked very well for me. This is also a valid treatment.

     

  • Mariote
    Mariote Member Posts: 2
    edited December 2019 #19
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    Karinmichelle6 said:

    Hi All,

    I am brand new to the board and have MBC: bone, liver & small intestine. I deal with pain by taking ascorbic acid plus using a heating pad. This has worked very well for me. This is also a valid treatment.

     

    Hi. I understand ascorbic acid is Vit C. Do you take it orally? Or through IV? Can you please share the dosage? Thanks and God bless.

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