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krhilde
krhilde Member Posts: 16
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

I am 4 mos post chemo, 2 mos post radiation and found out results of a followup pet scan on Mon that I have bone mets all over, mediastinal nodes and others lighting up (I was 1/23 in right axilla before and the one was microscopic), possible have another tumor in right breast.  How can this happen so soon and so extensively?  Even my oncs were stunned; the followup Pet scan is not even really done with my initial dx and only pursued with insurance at my insistence.  I was just starting to get back to my life again.  I have a bone biopsy today to re-evaluate tumor character.  I am terrified.  

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  • lago
    lago Member Posts: 17,186
    edited January 2011
    Khilde I am so sorry this is happening to you. Please understand that there are women here that live for years with mets. No reason not to think you won't be one of them. Yes it does suck. Cry
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  • littletower
    littletower Member Posts: 333
    edited January 2011

    Oh Khilde:

    I am sooo sorry about this. Big cyber hugs. Wish there was more I could do. It totally sucks. Lean on us for support. The Stage IV ladies know so much. And Iago is right, there are lots of women to inspire you. Again, hugs and more hugs. 

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  • jenilo
    jenilo Member Posts: 27
    edited January 2011

    I am so so so sorry, I really feel for you, please dont give up the fight, I know its so easy to give up but there are many many ladies on stage 4 forum here that will give you so much hope and support, they have certainly helped me in continuing the battle, be strong as strong as you can , lots of love and hugs sent to you .

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  • Jelson
    Jelson Member Posts: 1,535
    edited January 2011

    Khilde

    what a tricky nasty disease this is and what a cruel shock for you. Yet eventhough you were working your way through treatment and things were apparently ok, You INSISTED on the Pet Scan, hold on to that thought, intuition is obviously one of your many strengths. You are terrified of course, but you are not helpless, weak or alone. Trust yourself and your ability to make decisions and maintain control over your life. 

    Hugs,

    Jelson 

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  • carcharm
    carcharm Member Posts: 486
    edited January 2011
    I am so sorry this happened to you. Cancer f@#$ing sucks!! I wish I could hug you to take away your fears.
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  • krhilde
    krhilde Member Posts: 16
    edited January 2011

    Thanks to all for your support.  I feel like such a baby...can't stop crying and my mind has a continuous bad movie flying through all the time.  First time I attacked it head on with a lot of strength.  This time...feel like a wet noodle.  Had biopsy yesterday.  Good news...the interven radiologist said the lesions were so tiny he was going to have to work hard to find a good one....bad news....there were LOTS to choose from.  Results next week.  I am glad to have a forum like this to learn from and many sweet women to vent with. I know the strength will come, it's just taking it's sweet time. 

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  • lago
    lago Member Posts: 17,186
    edited January 2011
    Khilde just to let you know someone from another thread just went on a clinical trial last month. She is currently NED with complete response!
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  • melania
    melania Member Posts: 117
    edited January 2011

    Hang in there please , let's hope and pray that it's not cancer when they do a biopsy, did u have any other previous bone scan when first diagnosed  or this was the first one ?? I mean is this possible that u didhave them but  they missed it ?

    We are all scared of it , that can happen to any of us , but be strong we are fighting right? even if it's bone mets then we have to fight harder , there are lots of treatments for it . Be strong , i will pray for you .

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  • krhilde
    krhilde Member Posts: 16
    edited January 2011

    lago: That is encouraging! I'm going to have to look for that thread!

    Melania: My previous PET scan was after lumpectomy but before chem/rads and was clear.

    I have an appt tues for a 2nd opinion at MD Anderson, so hopefully if there are any clinical trials I can do, I will be steered that way.  My current onc got some blood results back that showed normal tumor marker levels but elev blood calcium....hmmm.   I also see her tues for biop results. I think I will be better and more level headed when I get all the information (at least I hope so) and all the success stories on here will start to overcome the crazies in me head. Tongue out

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  • TriciaK
    TriciaK Member Posts: 362
    edited January 2011

    I'm so sorry, are you taking any hormone therapy???

     Also have them do a full her2 testing and hormone testing on the mets as this can change and affect your treatment

    ((((hugs)))

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  • krhilde
    krhilde Member Posts: 16
    edited January 2011

    Haven't been on for awhile....kind of an exhausting whirlwind.  Had the 2nd opin at md anderson....they agreed with all the previous treatment and with my other oncs proposed plan and no clinical trials that I qualified for so I opted to return to my other oncologist who is much closer to home and a smaller setting.  Had Zometa infusion Wed, Lupron today and will start arimidex in a week.  I am doing better but extremely freaked out because 10 days ago there were no lumps in the breast, then a few days later there were two small spots, then by the next night each one of those spots had a new lump next to them.  Today there are at least 3 new ones.  Has anyone else experienced anything like this happening so fast?  Md anderson said they wouldn't recommend a mastectomy because its easier to see if treatment is working in the breast vs. bone.  My regular onc is undecided and wants to wait to see if the activity remains high in that breast. 

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  • JeninMichigan
    JeninMichigan Member Posts: 2,974
    edited January 2011

    khilde

    I am very sorry for a recurrence so soon after you finished your initial treatment.   Please know that although metastatic disease is a chronic condition, once you get things under control, you can live a good life.   I too had things change quickly for me.  Started out at Stage IIb, had a bone scan/ct scan which was clean and then a lumpectomy.  Three weeks later before I was due to start chemo, my oncologist ordered a pet scan.   It came back with 4 tumors on my liver, and lesions on my hip, ribs and supraclavical chest nodes.   After three cycles of chemo, all the tumors were resolved and I have had clean pets every since (that was June 2008).   Please come over to the Stage IV forum for lots of support and information. 

    (((hugs)))

    Jennifer

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  • krhilde
    krhilde Member Posts: 16
    edited January 2011

    Thanks to all of you for your support.  I am calming down a bit and ready to put on my big girl panties and go to the stage IV forum.

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited February 2011

    All the stage IV people are over there and will hold your cyber hand when you need us  :>  I know this is a total shock and right now it probably feels like you are trying to stand up during an earthquake.  The first few months are very hard, but you will get stronger and be able to ride that earthquake in no time...heck, I can even hold a cocktail without spilling sometimes!!!   

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