Spread to bone?

jinkieland
jinkieland Member Posts: 3
edited July 2019 in Diagnosed and Waiting for Test Results

I was diagnosed with Stage 2 IDC on my left Breast and i had been through breast PET scan and CAT scan.
Port insertion supposed to be done in 2 days and bone test is scheduled for next week.
All seem to be good, but my Oncologist Doctor just called me that the PET and CAT scan results do not look good. Seem like the cancer may have spread to my bones and possible neck area as well. So they have to cancer the Port surgery and wait for the neck PET scan (will be scheduled) and bone tests. I think this is why I always felt pain in my right collarbone area?
I am very worried to see what is this going to imply? The original plan was AC, then T every two weeks for four weeks then Surgery and Radiation.
Now doctor will change to start with T first.
Seem like this is much worst than i am expecting,,,

Anyone has experience that the cancer spread to Bone and if there is any advise while i wait for the results?

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Comments

  • beach2beach
    beach2beach Member Posts: 996
    edited January 2018

    jinkie,

    Sorry you have found yourself here, but welcome. I don't have anything to add to your particular situation but I am sure there will be others along who can give you some insight.

    It feels you are in limbo until you get further tests done. Try to keep yourself busy until then. Wishing you the best.

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  • edwards750
    edwards750 Member Posts: 3,761
    edited January 2018

    Bless your heart I’m so sorry. While it sounds ominous you still don’t know to what degree the cancer has spread. I have a friend whose BC spread to her hips/spine area but only that area and that was some time ago.

    Try to stay busy if you can. Keep us posted.

    Diane

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  • ILikeCats
    ILikeCats Member Posts: 29
    edited February 2018

    I'm in the same boat. Had a bone scan two days ago, and my oncologist said there is one small area at the top of my femur that needs to be further examined, so I've got an MRI scheduled for Monday. I was originally diagnosed with IDC Stage IIA and now I'm looking at the possibility of Stage IV.

    I also had a CT scan yesterday to look at organs such as lungs, liver, and bowel. Haven't heard those results yet.

    To be honest, I'm not dealing well. Since about a week ago when my onc ordered the bone and CT scans, I have been in utter despair.

    Well, I'm not trying hog your thread, jinkieland. Just wanted to let you know I'm going through the same thing and I cannot find a way to deal with it other than Xanax, wine, and marijuana (recreational, not medical). Wish I had some better advice :-(

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  • ILikeCats
    ILikeCats Member Posts: 29
    edited February 2018

    I'm in the same boat. Had a bone scan two days ago, and my oncologist said there is one small area at the top of my femur that needs to be further examined, so I've got an MRI scheduled for Monday. I was originally diagnosed with IDC Stage IIA and now I'm looking at the possibility of Stage IV.

    I also had a CT scan yesterday to look at organs such as lungs, liver, and bowel. Haven't heard those results yet.

    To be honest, I'm not dealing well. Since about a week ago when my onc ordered the bone and CT scans, I have been in utter despair.

    Well, I'm not trying hog your thread, jinkieland. Just wanted to let you know I'm going through the same thing and I cannot find a way to deal with it other than Xanax, wine, and marijuana (recreational, not medical). Wish I had some better advice :-(

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  • jinkieland
    jinkieland Member Posts: 3
    edited February 2018

    How are you ILikeCats?

    Sorry to hear that you may have similar situation as me. What is the latest update?

    I was confirmed to has bone mets now which led me to stage 4.

    The chemo plan is change now just go with T first and then continue with Hormone pills.. Surgery may not be needed, etc..

    Like you, the results are completely different from what i was hoping for. Nothing we can change, just hope for the best.

    Hope you are holding well and have some good news along the way. Let me know if you have any question... I jsut started the chemo today. so far so good, first day no side effects yet. I read some posts that the side effect usually happens on the 3rd day...

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  • Meow13
    Meow13 Member Posts: 4,859
    edited February 2018

    jinkieland, did they mention doing any radiation on the neck area? I ask because a coworker of mine with ILC 1cm near chest wall had a bone met found on her hip. They are only recommending radiation, it may be because it is grade 1. She is taking tamoxifen.

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  • AmyKelly
    AmyKelly Member Posts: 1
    edited February 2018

    It's really sad to see you in this situation. Stay strong jinkie, God willing all good will come your way.  

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  • Moderators
    Moderators Member Posts: 25,912
    edited February 2018

    We are thinking of you lovely people. AmyKelly, welcome, and thanks for your supportive comment.

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  • timetobebrave70
    timetobebrave70 Member Posts: 83
    edited March 2018

    jinkieland, why no surgery? I was diagnosed in December and haven’t done anything yet but tests and more tests. I am so concerned that it’s taking so long (my bs keep going out of town) I am seeking another bs and oncologist. Either of them have really done anything except send me for tests. Luckily my new bs will have all the results of any possible tests she wants done!

    Ilikecats, how are you holding up and howis your test results? I hope you have some good news🙏🏻

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  • SSInUK
    SSInUK Member Posts: 245
    edited March 2018

    it is worth reading around about surgery for Stage 4 de novo. While I’ve read some oncs don’t advise it on the basis it’s too invasive with a stage 4 diagnosis, others strongly argue that removing the primary tumour lengthens survival, even in the presence of mets. My heartfelt support that you find yourself in this situation - - and a little hope. A dear friend of mine who was found to have bone mets from the outset (and did have fulll chemo and surgery) has just hit 5 years since diagnosis - and is doing greaton tamoxifen alone, no chemo or anything. Why shouldn’t this be you.too?

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  • Maggie7272
    Maggie7272 Member Posts: 11
    edited March 2018

    I'm waiting on a pet scan. Stay strong. How long were you experiencing collar bone pain

    So sorry this is happening to you.

    Hugs

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  • Amy52
    Amy52 Member Posts: 2
    edited July 2019

    I just had a bone biopsy on my left hip following a pre-treatment CT scan and bone scan. Waiting is horrible!! My oncologist called to confirm I have a small met in that area, he feels he can “cure” it and he’s continuing with my stage II treatment plan. I just got the information yesterday, still processing and trying to find others like me. I did ask if it was a small percentage of cancer cells and he said yes, I will need to think of more questions for my first chemo treatment this Friday 7/26/19. I’m alarmed to say the least, but trying to stay positive

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  • Momchichi
    Momchichi Member Posts: 133
    edited July 2019

    Amy52,

    If you haven't already, check out the oligometastatic thread in the stage IV forums, those posts gave me a lot of hope. I have a single met to my spine and my radiologist said there is a lot of evidence that shows treating us more aggressively leads to better outcomes.

    https://community.breastcancer.org/forum/8/topics/786652?page=9#top



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